Walter Trout has proudly become a patron of the British Liver Trust
November 05, 2015
In his continued quest to raise awareness of liver failure, Walter has proudly become a Patron of the British Liver Trust.
Liver disease is currently the third commonest cause of premature death in the UK – more than 12 million are at risk yet there are very few resources compared with other conditions. With more funding into better research and care and by encouraging many more people to become a donor we can save more people’s lives..
“I am delighted that Walter Trout has agreed to support the British Liver Trust and become our Patron.” Said Andrew Langford, Chief Executive of the British Liver Trust. “As Walter knows it is a silent killer and by the time that you have the symptoms it can often be too late. I would urge everyone to take the British Liver Trust's free online Love Your Liver health screener on our website to see if you are at risk. Please also make sure that your loved ones know your wishes regarding organ donation and consider joining Walter in supporting us.”
Talking about his involvement with the trust, Walter opens up; “Liver disease almost cost me my life. The disease progressively drained me of my life force until I was on the verge of death. A miraculous liver transplant allowed me to survive and thrive once again. I owe my life to the research and development in the medical field around treatment of liver diseases. I am happy to work with the British Liver Trust to promote awareness about the silent killer among us. I am thrilled because new treatments are emerging at the moment, and to help raise awareness around this, and to empower people to seek treatment, is something I feel privileged to do.”
British Liver Trust - http://www.britishlivertrust.org.uk/walter-trout/
Walter's Health Is Continually Improving After His Sucessful Liver Transplant - Updates
Become an organ donor after your death.
"Today I Played The Guitar For Four Hours!"
January 22, 2015
Excerpt from Marie's Blog entitled
"Houston, We No Longer Have A Problem!!!"
Last week I went on the last required class for my degree. I was gone for a week – and had an incredible time. Immersing myself in learning on all levels.! It was glorious. And as the week went by, it became clear to me that I didn’t have to worry about Walter. Each night when I talked with him, he sounded energetic. He was happy to tell me about his day. “Today I played the guitar for four hours!” – Today I rehearsed with Michael Leasure and some other amazing musicians for three hours – I stood up the whole time.” Read More
Walter's First "I'm Back" Concert
December 31, 2014
New Year’s Eve 2014 at the Trouts…. Standing in our driveway surrounded with friends and neighbors watching the annual driveway jam took on a whole new dimension yesterday. A year ago, Walter could barely make it through one song, and our family existed under the heavy foreboding weight of uncertainty. Our lives were fraught with a sense of impending doom. Walter was getting weaker and weaker, and we all feared that the end was near.
What a year it has been! Everything has changed for our family in this past year. We have faced death; we have faced our fears, and our own darkest inner shadows. I have learned to share my life from a place of vulnerability, and been blessed with understanding and support from others that has changed my life. Our family has been loved unconditionally – and we have survived emotionally and physically with Walter still among us like Lazarus rising from his deathbed thanks to medical science and the ultimate gift from an organ donor and his or her family.
Last night marked Walter’s first short concert experience – where he played and sang for an audience. It was a moment in time that seemed impossible just a few short months ago. The temperature outside was close to freezing – hardly an ideal setting for fingers to have to move at lightning speed over the fret board – but nonetheless Walter played close to a flawless short set! He played and sang his butt off sharing the driveway “stage” with all three of our sons. The tears in the eyes of our neighbors who pray for him daily reminded me that this event was one we share with so many, who have not only held us this past year, but who have given us the love, faith, and the courage to fight for this moment to happen.
I stood there between the headlights of our car in the driveway that provided the light for the concert and took it all in. I watched many wipe tears from their eyes as Walter reclaimed his voice, his moves (those leg moves), his playing style, and his energy that drives the music through the sound barrier with his super-sonic rocket booster playing style. I did not cry. I reveled in the moment. I celebrated with each breath. I watched a miracle unfold in front of me and I stood almost in disbelief. The moment manifested what I had been hoping and praying for all year – and there it was right in front of me on the threshold of the New Year: Walter KICKING ASS!!! He was surrounded musically with the wall of sound provided by three Trout guitar players and a Trout drummer, our friend Eric on bass, and the loving presence of a small audience egging him on.
The short set list was:
Auld Lang Syne
Born to be Wild
The Trouts took turns soloing and singing. I will see if I can get a decent sound and video file uploaded to youtube to share it with you in the coming days.
Honestly, I don’t understand why I didn’t cry. Maybe I am still in shock from the past year and still can’t really unpack my emotions. But as I write that, I actually don’t think that is it. I did not repress or deny my emotions this past year. As those of you who followed our journey know, I shared the bad, the ugly, and the terrible as it happened. I visited with it; I walked my way into it and through it with you walking right next to me. I lived the blues openly. And last night, it felt as if I danced even as I stood perfectly still. I danced my way through a celebration of epic proportions! I heard Walter’s stage voice and playing wash over me, and watched his essence unleash as it only really does when he is in the zone on stage in front of people with a fat groove behind him.
It was a real life miracle that found its first solid manifestation last night: Walter still has it! He is still able to musically launch into the stratosphere and take others with him on that flight of experiential delight. It is such a big part of him! And “it” survived too!
Wishing others a Happy New Year has a new timbre and tonality to it for me this year. And as I stood there between the headlights of our makeshift driveway concert venue last night, I sent a grateful wish to each of you: May you share in the joy of this rebirth, this newness, this joyous reclaiming with us; my thoughts go to each of you with profound thankfulness! May you too find the wonder of new beginnings as we do ours!
Happy New Year!
Christmas News from "The Trout's
December 24, 2014
The rain is gently falling – and the sound reminds me of the permanence of all things. It is a gentle, steady sound that has accompanied humanity in all of its existence. It soothes my soul on this Christmas Eve morning.
Soon the sounds of my family will join in, and we will head downstairs and start preparations for our part of our Christmas dinner that I will take with me to my mom’s tonight where our entire family will gather. We will sing Christmas hymns and songs, my aunt will accompany us on the piano, we will dance around the Christmas Tree, eat lots of good food, tell silly jokes, laugh, marvel at candle lights lighting the tree, and hold hands. Glaringly obviously absent from our holiday celebration are the presents. We are not doing that this year. We all are the gifts.
This year we are not taking the togetherness for granted: Who we are with. The food we eat. The rituals we engage in. That is our presents. Being able to be here is a present. Being alive and loved is a present. If I think about it, it is a present that so far surpasses any man-made contraption that could fit under the tree or appear magically out of Santa’s overstuffed sack.
Walter is with us. Walter and I have been in Denmark since December11th, our kids joined us shortly thereafter as they could get away from their obligations at school. And we have just been together in the dunes by the West Coast of Denmark in a little cottage by the sea. We have visited with a few friends and been with my family. Family we didn’t know if Walter would ever see again. Visiting beloved sites again with Walter is better than anything – better than any present I can imagine.
Walter was cleared by the doctors to travel here; and with hand sanitizer, frequent hand washing, a careful screening of who Walter gets close to, he has done exceedingly well. He is gaining weight – he is enjoying eating, he is playing guitar with his sons. He is rested and happy. We all are. I delivered a first draft of my dissertation before I left and have now received feedback from committee members and major advisor. However, I am not touching that thing until after we get back to California for New Year’s Eve for my revisions! This is time to just be. I am doing exactly what I want when I want it. It is glorious!
Part of that has been working on getting Walter’s touring schedule ready for next year! He will start in July in the USA and do select shows and festivals, then go to Europe in November and do a tour there. We should be ready to announce a more full tour schedule early 2015. To work on Walter’s career feels like a gift too. He is looking forward to playing again. I know it is almost overwhelming for him to imagine getting back on stage again. He watches old videos of him playing with Mayall and with his own band; and he imagines what it will feel like to do it again. He practices and gets stronger.
The other night my mom had bought us all tickets to go see a boy’s choir perform Händel’s Messiah with a symphony orchestra and solo singers. It was glorious. Another day, a friend of mine took us on a three hour long tour of a geothermal, trash-to-energy and straw-burning power plant. We learned how this area of Denmark is completely able to provide for its own energy by inventive sources. They actually have an excess of electricity due to all the wind turbines. But other energy sources: Solar, wave technology, trash-burning (completely clean), and geo thermal also contribute greatly. To boot there are no landfills, and no pollution! And combined these sources provide an abundance of cheap and clean energy. So many things are possible when people led by visionary politicians just band together and make it happen by applying new technology and a willingness to invest initially for a huge pay-off down the line for both people and planet.
Other than that we are playing Trivial Pursuit, cooking, eating, visiting, and resting.
Life is such a gift. And we marvel at being alive. Each day we talk about how the love of our community – and the blues community – sustained us and held us during the worst crisis that any of us have ever experienced. How doctor Shafer and other staff at the hospital in Nebraska daily gave us the courage to traverse the crisis we faced. How the donor and his or her family gave Walter the ultimate gift. How we are still able to pay the bills due to the fundraiser that made it all possible.
And presents at Christmas look really silly in comparison. We have had a year of incredible gifts showered on us. A year of incredible torment, pain and hardship framed and put in perspective by the love of community.
From the entire Trout family at Christmas we want to wish you a beautiful holiday season, and a celebratory entry into the New Year. I stand comforted knowing that Walter and I faced many of our worst fears in the past years and managed to walk through them with the loving help of others. It makes me realize that living in fear is not necessary. My New Year’s resolution is:
Plan for the future, live in the moment, and adjust the plans for the future to the present reality as necessary. Appreciate the gifts of community, of love, and of family. Strive to be real. Above all always love excessively!
Watch Out World - The Wild One Is Coming Back!
November 24, 2014
My boys out on the town. We went and saw Coco Montoya at the Huntington Beach Library the other night. I loved every minute of Coco's playing. What a soulful musician. So happy to call him and his beautiful wife Lenora friends. Walter, Mike, and Dylan had a blast. The next day they went in the garage (Mike and WT on guitar - Dylan on drums) - and played until the roof lifted.... And suddenly I heard Walter's voice singing a rocking version of Born to be Wild Yes Walter - you are! It was the first time he had played and sung at the same time. It takes much strength - and he nailed it! Watch out world - the Wild One is coming back! Thanks to Diane Adams for such a great night out! It inspired us in many ways.
Walter's Come-Back Tour
November 20, 2014
Walter continues to do very well indeed post-transplant. We are now just starting to contact select venues and festivals about booking Walter and the band for the second half of 2015. We want to make sure Walter is ready for the road and make his come-back a special experience for all of you, who supported him so movingly through his illness and eventual miraculous liver transplant.
Walter on guitar playing Cream, Hendrix and Old Blues Tunes
November 14, 2014
The sound from the other room is that of Walter and the boys playing pool. Just before – they were in the garage jamming. Dylan on drums, Mike and Walter on guitar. Cream, Hendrix, and old blues tunes flooding my auditory canal! Walter is finding his way – playing with the boys. It is exciting to hear – and to know that each time he gets stronger; working towards reclaiming his strength and his sound. In the process he forges new bonds with our boys. They are gradually building trust that he is going to stick around. It has been such a tough haul for them. For all of us!
I am getting the message; that I need to put down my warrior suit of armor and stop pretending that I know anything. Each time I think I have a plan; God shows up and points me in another direction that I was not prepared for.
Such was the case with my trip to Costa Rica. Two days into the trip I Skype’d Walter. Denial had me not picking up on the fact that something was awry. But as Walter spoke, reality set in: He was once again in the Intensive Care Unit. This time at our local hospital! I set everything aside for the next few days. I wanted to stay close to phone and computer – Walter insisted that I did not come home. But I did not want to go through with Theresa’s and my plans to go to the rain forest and the beach. We cancelled. Instead I booked Walter a flight to Nebraska to get him thoroughly checked out. I talked with various doctors. I emailed There was suspicion that there were abscesses in his liver. Or infection around his bile duct. And this is what had caused yet another bout of infection. UCLA could not admit Walter as rapidly as they could in Omaha. So I got him off to Nebraska from my laptop in Costa Rica!
Vernon stayed with our kids longer than he had planned. Unfortunately this meant that he could not go with his darling Debbie to her mother’s Memorial Service in Iowa. He cancelled his trip there to stay with our boys. We are eternally indebted to him – and to Debbie for toughing it out at a very difficult time without him. We are carried by such love from our community. And I just sit in awe at the kindness that surrounds us. I sometimes wonder where our humanity is going when I read news stories or watch TV, but when I look around me – I feel surrounded with love and kindness every day. It is real. It is there! And I am so thankful!
Arriving in Omaha, the amazing Dr. Shafer, Laurie, and the liver team at the Med Center came through again. They decided on the proper diagnostic tools to see what was going on with Walter. They performed thorough tests and eventually concluded that whatever had caused the infection this time was gone. His liver was perfect. The bile duct and stent were perfect. There was no infection in the blood. Nothing growing. Just a mysterious bout of God-knows-what….
So I stayed at my beautiful friend Theresa’s apartment in Costa Rica, and we worked on our dissertations. Not the trip I had planned or anticipated – but the trip I got! Theresa offered some great perspective on my work – and I helped her moving hers along. We bookended our stay together with visits at a spa overlooking the rainforest where we got massages and marveled at hawks, butterflies, and amazing views in front of our eyes. And we wrote, we talked, we studied, and wrote some more. It turned out to be perfect once I gave up my expectations of what it should have been!
When I came home Sunday – Walter was in Omaha. I managed to get him back on a plane to California again Tuesday. And since he has been to Physical Therapy, taking the boys around, working again to reclaim his music, and he is markedly stronger than when I left.
This journey post-transplant is something else. The first 6 to 12 months are supposed to be unpredictable. But each time we have a snafu – it seems to go faster – and be less serious. It is a roller coaster ride nonetheless. So we keep riding! However, my Amazonian suit of armor is proving to be less and less useful. I am considering that maybe I don’t need it anymore. Maybe my new protection is just taking everything as it comes. And moving with it – knowing that no matter what, it is not my plan that ultimately matters!
Walter Was At Home Looking After The Kids
November 04, 2014
Sunday night, Walter drove me to the airport. I was getting on a red-eye to go to Costa Rica, and Walter insisted that he would take me. The last time he and I were at LAX together, was April the 9th, when Del and I picked him up at UCLA to take him to Omaha on a wing and a prayer – our last ditch effort to save his life.Back then, he couldn't drive. He could barely sit up! And he had to get carried in and out of the car. And here we are - seven months later. He is driving the Suburban – our tank of a car – Dylan is doing homework in the backseat, and I am in the passenger seat just marveling. I watch his hands on the steering wheel; I look at his profile in the dark while the street lights and headlights of the opposing traffic light his face intermittently. We blast up the freeway together. His big voice fills the car as we talk back and forth about all and nothing on our way.
I was fairly quiet. I had had a headache for days that wouldn’t go away and an unexplainable sense of fatigue and trepidation about the trip. A kaleidoscope of emotions ran through my body. As soon as I got on the plane, I fell asleep. I slept the whole way. Waking up as we were landing, I felt as if I could sleep for a month. When I got to Theresa’s beautiful place, she served me breakfast, and then I went to sleep again!
Right now I am eating a piece of Kaluha filled chocolate after an entire day at the spa with Theresa. My headache is gone. I feel at peace. I just spoke with Walter, and he and the boys are doing great at home. Our 18 year old, Mike voted today for the first time, and Walter took him. Walter also worked out a snafu with regards to my cell phone company for me – they had charged me $150 in data charges for my first 24 hours here in Costa Rica, even though I had barely used it. He got them to refund it, as they had sold me a data plan for the trip that was invalid… whew! He also took one of the kids to the doctor; he took them to get passport photos taken…. Routine stuff, but stuff I did NOT have to do!
So I was in the hot tub today while Walter was at home with the kids holding down the fort – I cannot express what a gift it is. I am here with one of my dearest friends. We talk, we are quiet, and we explore the surroundings. Today was just pure indulgence. The spa overlooked a tropical landscape, perched on the edge of a hill with a view of the valley. Theresa and I had our own hut with a Jacuzzi, where we could relax between the treatments – and where they also served us lunch. Below is a picture Theresa took of me - and our view. Tomorrow I will work on my dissertation – and Theresa will work on hers. We are fellow students who share much more than just the love of learning.
Maybe this moment in time feels so much sweeter because I experience it on a backdrop of the anxiety and stress that has been trailing me for the past year and a half. I choose to trust that I can unplug and not have the home front unravel in my absence; that we won't have some horrible setback happen for Walter while I am gone. I relax into the sweetness of being for a little while and feel held and supported.
Outside, the sounds of the jungle caress my auditory nerve. I hear a dog bark somewhere in the distance. The breeze gently flows through the room, and a confused rooster clears his throat in anticipation of fulfilling his duties first thing in the morning.
I Have Very Little To Report
October 31, 2014
I have very little to report: Walter continues to reclaim his strength. I pinch myself! He had a check-up at UCLA yesterday, and they were impressed with his blood pressure, liver enzymes, kidney numbers – everything! He walks faster all the time – now 90 % of the time without a cane, and gets stronger every day. We hold hands when we walk together now. How I missed that! And although his hand is still not as muscular and as big as it will be once again – and it once was – it is here holding mine!
He plays the guitar in our living room, and works and works to get strong. He rides a stationary bike, and he does Physical Therapy. He walks. He drives. He eats. He sleeps. He lives. It is a full-time job to reclaim your body after having wasted away for so long.
As for me, it feels like all the stress from the past many months is encapsulated and cannot really leave me. I have been so used to being on high alert, and I cannot relax. On top, let me tell you: Anybody who wants to write a PhD is crazy. Anyone who decides to do it on “the relevance of the blues in the 21st century” is out of their mind, and someone who decides to do both in the wake of a battle between life and death is bat shit crazy…. Yup that’s me! I have done the research over the past few years, and I so want to put this together in a way that honors the magic of the blues. It consumes me. I work without a break. Walter supports me. Most of the time, he sees my back as I write, or read, or compute numbers and findings. And he bears with me. He quietly just loves me by doing a lot running errands, picking up kids, etc.
In the big picture, little annoyances are like drops of water on a goose. Our kids are alive. We are alive. Our house is still ours. It feels like we are having a break. A breather! We have a moment in time right now, where we little by little can begin to pick up the pieces of our lives again. We are still finding our equilibrium again. It takes time. Each day I deliberately stop the “what if’s”. They are as useless now as they ever were. When things go well – especially after a long time under stress – I have a tendency to want to guarantee myself that nothing bad will ever happen again. And it is such a waste of my time. So I return to the moment. All I know is that right now – all is well. I breathe deeply and remember to appreciate.
And on Sunday I go to Costa Rica for a week. I will bring books and laptop and will work some of the time. But also take time to just be with my friend Theresa. Walter is excited to have guy’s week – our friend Vernon comes to stay with him and the kids. And now that he is able to do more, he jokes that he and Vernon will rent Harleys and go ride…. I just hope the house is still standing when I come back!
The Belly Laugh Is Back!
October 24, 2014
The belly laugh is back!
Yesterday as we were stumbling out of our little Honda Fit EV – all four of us to go to dinner, we had this shared belly laugh. I don’t remember what prompted it; we just laughed and laughed.
Right there, I realized that that kind of communal laughing with total abandon is something we haven’t done as a family for at least a year- maybe more. And as we wobbled into the little local storefront to have dinner, still half bent over from laughter, we were warm and glowing from the feeling.
More and more, Walter is returning to his old personality. He is holding the door for me as we go into places; he is getting that gleam back when I look into his eyes. Tonight as we were walking together, I forgot completely that anything had happened to Walter; we just walked hand in hand, and it felt like it always have – until he got ill. He can still not keep that kind of pace for long – but for a short while, I got a glimpse of things to come.
And it is like a hint of normalcy that comes back in these moments. I pinch myself. Can it really be? It has been so long; such a long haul.
Returning to normal might not sound that exciting. There are still all the little things that irritate and annoy – there's still the dirty dishes, the stacks of bills, the work, and the laundry. There are a ton of little everyday things that need to get done and dealt with. But I remember well missing everyday life so bad that I could scream. And now it is rematerializing. I can go in and look at a sleeping Dylan and feel his warm, soft cheek, I can cook him breakfast in the morning; I can be there when the kids come home from school. I can strategize homework with the boys. And as I work in my office, I can hear Walter working out with weights and know that this time; each repetition actually makes him stronger! Before the liver transplant, even when he worked out to the max of his capacity, he would just waste away – no matter what he did.
As Walter reclaims more and more of who he is - slowly but surely- the rest of us are also able to put our lives back together. And believe me; we notice every little step back towards “normal”. Normal is beautiful. Normal is exceptionally special. When Walter was close to death, nothing seemed as shiningly magnificent as the thought of once again experiencing daily life. I send up a thankful prayer for each moment of it. I realize that the twins of gratitude and joy thrive in the fertile soil of everyday existence.
It's All Good News
October 20, 2014
Walter will finish his home IV medication today, making this a three week run of a combination of several of the strongest antibiotics known to humankind! And he is holding up remarkably well!
He is walking a bit better all the time; tends to forget the cane once in a while – and does fine without it. So his walking will be restored. His skin color is great! No more bruising and the wounds on his arms are healed up. His arms will be scarred forever; battle scars that he wears with gratefulness! He had a check-up at UCLA last Thursday, and his lab numbers are restoring to normal all around. Platelet count is up, liver enzymes are perfect, kidney numbers are great, no more signs of infection, his cholesterol is low. In fact, some of his lab numbers are quite a bit better than mine!!! His constitution must be held by love and prayer - and a good dose of the best of modern medicine – because he is really doing fantastic!
Saturday, Michael Leasure came over and visited with him for a while. They went in the garage and before long; I could hear Michael testing the drums. Or so I thought. Of course I was in my office writing and studying for my dissertation, so I wasn’t paying much attention. And suddenly I heard this faint sound - then a bit louder- of an amplified guitar playing along with the drums. Michael had urged Walter to plug in and play with him! After a little while they emerged from the garage, and Walter fell into Michael’s arms with tears coming down his face:
- “I didn’t even know how much I missed this” he said. “The power, the sound – and then playing with you – I know you so well – I thought of something musically, and before I did it, you already followed me there…”
That psychic connection that develops between some musicians who have played together for a long time! It is about as life-affirming as it gets!
The same day, Walter had been at Doc’s guitar shop and talked guitar with the guys. They had plugged him in too and had him play a bit for them. So slowly but surely, Walter is finding his way back to the music – or should I say: It is finding him through the people who love him. He still has a ways to go. The fingers are rusty. He is still weak. But he will get there. And he can re-start physical therapy this week. Finally!
And again, I sit in grateful appreciation. More and more I can “take my hands off the wheel” with regards to micro-managing every detail of Walter’s recovery and get back to my studies, to the kids, to me. And I have some catch-up to do. I lost 6 months or more of precious study time, and I am scrambling to finish on time – even with the extension I was granted. I can’t sleep more than four to five hours at night, and have a persistent stomach ache. And I just realized through one of my friends, Debra, who pushed me “a bit” about it that I will need to stop and find a way to relax. And relaxation does not happen for me right now in our house. There are too many things and people calling my name. Or rather things that I just habitually get involved it that I probably don’t need to! When you have held someone’s life in your hands for a long time, it is a transition to start stepping back. Sometimes I find that I tend to think too much for my guys – and they are quite capable at doing things their way – once I stop being in their face about it! If it doesn’t happen my way – and sometimes it doesn’t happen at all - so be it! As long as Walter takes his medicine, the rest is really not that important or can be fixed later. But it is time for me to face the music and look at my reality: The anger bursts, the stomach ache, the lack of sleep…. Yes, time to look at Marie a bit! In a couple of weeks, on November 2nd, I leave for a week. I will go to Costa Rica and visit a dear friend and former student at my school.
Once I accepted the need for a break, things fell in place very quickly! Our friend, Vernon will come and stay with Walter and the boys for most of the time I am gone. Walter and the kids will have “guy’s time” and I will go and have “girl’s time”! The dissertation will either happen on time, or it won’t! I need a break!!! My friend, Theresa has room for me to stay with her in her apartment, and I can fly there business class on my frequent flier miles! Theresa and I will go to a beach where turtles hatch at this time of year and watch and learn! We will have a day at a spa, we will get to spend a bit time with a common friend and former student from my Graduate School, and we will get to just walk, experience, and talk about all and nothing when we feel like it.
Life continues. After the hurricane of illness passed through our lives, we are slowly starting to re-build. Returning to life is like returning to the house you left boarded up when you evacuated to get away from the coming destruction. And little by little, as I pull off the boards, I discover that my windows just need a good cleaning, but they are still perfectly capable of letting in the light.
Walter Is Back Home From UCLA
October 12, 2014
Walter is back home from UCLA. I don’t know how it works with this man, but somehow he is STRONGER after lying around deathly ill for at least 5 out of 10 days in the hospital. He is stronger than he was before he went in! His guitar playing feels better to him; he has more strength to push down the strings and play. He walks – still mainly with a cane, but walks nonetheless – all over the place. He eats – his appetite is back again. I am actually amazed! The home nurse came today for 30 minutes and made sure he got his IV antibiotics. And ever-since he has been out and about with the kids, while I sit and work on my PhD dissertation until my butt feels like it is flat! And then I sit and write some more!
But it is so glorious to see this progress. I am amazed, happy and gloriously involved again in my research. Walter is the strongest human being I have ever met. Don’t let his still frail frame fool you! He is one kick-ass individual.
I know not to get caught up in the wild up and down swings that is common for this journey pre- and post organ transplantation. But I just want you to know that I am encouraged by what I see and experience with Walter right now. And while I know we may not be entirely out of the woods yet, it is great to see the sunlight penetrate the dark forest cover on some days and flood our path with bright, warm light. And I just wanted you to know so you can share the light times as well as the dark ones!
Thanks for the prayers. We are living a miracle!
Walter Is Better Today
October 05, 2014
Bottom line: Walter is better today after two days where I was getting worried. But after me out of desperation calling Dr. Shafer from the Med Center in Omaha, and him following up with the doctor teams at UCLA, suddenly a lot of tests were performed last night. Symptoms kept worsening, numbers kept going up, fever kept coming back no matter how much antibiotics were added intravenously.
And the tests found a narrowing of the bile duct. A stricture. They believe this is what caused the build-up of bacteria, and probably why the liver enzyme numbers were going up in the past few weeks. They also checked Walter’s heart to make sure it wasn’t harboring bacteria and thus constantly re-infecting the blood. The Echo-cardiogram showed his heart remarkably strong and healthy – even after all this. So they inserted another stent in the bile duct last night, and added two more kinds of heavy hitting antibiotics. This morning Walter was better. Numbers were already starting to normalize (although still elevated) and fever has not been back today.
The biopsy triggered the episodes that we have seen for the past week, but it was a great relief to find out that it did likely did not entirely cause it. Or at least it seems that way.
Today Walter walked a good stretch with me and his awesome nurse, Andrew. We also went outside in the 100 degrees weather for a while. Andrew has been instrumental these past few days helping me get the various teams of doctors to communicate and he also helped facilitate the contact to Omaha. Good nurses are a godsend. They are angels that often function under much stress and have too many demands thrust at them at once. And right now, Walter is in the hands of the very best we have found anywhere.
I brought him homemade chicken soup (with dumplings) I made especially for him, and for our son Mike who has a bad cold (don’t worry; Mike is not getting near Walter while he is ill). He ate a good portion. I left more for him later. This is the first he has eaten a meaningful amount of food since our anniversary dinner in Las Vegas last Sunday.
So encouraging news – and measures have been taken to fix things. Today was an encouraging day.
Walter Was Back In Intensive Care
October 02, 2014
Walter is in the Intensive Care Unit at UCLA.
I know – it seems like a déjà vu! But the liver biopsy that was scheduled for Monday, ended up either activating internal bacteria or inserting new ones in the bloodstream (the most likely scenario). Walter felt great before the biopsy, and as soon as he woke up after it, he was shivering and quickly developed a fever, low blood pressure, quick pulse, and irregular heart beat; the sure signs of serious infection.
The biopsy thus directly caused it or activated it. But either way, he has another bout of sepsis.
The results of the biopsy were inconclusive, and so tonight more tests were scheduled. But first they now have to deal with the sepsis. So far he has spent two days in the ICU, and just now transferring to a regular floor as he is finally no longer in critical condition.
Further tests will show if there even is or was a problem with the new liver at all. We had a magnificent weekend in Las Vegas. Walter felt great all weekend as well as Monday before the biopsy. And after it, he was once again close to the edge.
I have been driving to and from UCLA and taking care of the home front. I get up at 4AM and go to bed late. Thus the rather brief update this time. But we are hanging in there. Walter ate some food today, and was out of bed walking a bit as well.
I will post another update when time permits – and I have news to report. Thanks for hanging in there with us… It is a tough ride and I am sure we are all emotionally raw from it. Please do not blame the doctors or the hospital. Medical science is not exact. Everybody is doing what they can. And bottom line is this: Walter will pull through this one too. Just watch!
Dinner Surrounded by Picasso Art
September 29, 2014
Dinner surrounded by original Picasso art and my favorite artist who shaved off his beard as a special anniversary present for me! So happy! So much to celebrate!
Immersed Ourselves At Being At Home
September 28, 2014
We have immersed ourselves in being home. Walter is gaining weight and has an appetite that is all of a sudden humongous. He has gained over twenty pounds since he got home less than a month ago! It has taken him a while to get a consistent physical therapy schedule set up as we are now in the over-populated L.A. area. Therapy places are busy and the good ones, or the ones that are experts in the kind of rehab he needs, are filled up. But he starts next week full blast. In the meantime, he is visibly stronger and can walk better all the time, and he plays the guitar better too. At first he had very little finger and hand strength and the thought of bending notes seemed a pipe dream. But now he is bending strings and playing short stints of amazing stuff. His endurance is still not high, but gets better little by little.
I am continuing my research for my PhD project. It is coming along nicely, and I can see all the scattered pieces from the research phase starting to come together. That is exciting! The kids are doing well. We are enjoying each other as a family.
And then again, we live in the knowledge that the first year post-transplant is touch and go. And we had a reminder of that last week. I was on my morning walk when my phone rang. It was from the liver team at the Nebraska Medical Center, who will monitor Walter’s liver health for the rest of his life. They had detected high levels of liver enzymes, and wanted Walter to re-test. He did, and the enzymes were even higher. He tested one more time a few days later, and the numbers kept going up. This could be a sign of the immune system attacking the new (foreign) organ and eventually destroying it. We were scared. It is so easy to go right back into fearing the worst, and both Walter and I are “raw” emotionally from what we have been through. He could lose the new liver…..
I had a heart to heart with Walter – and told him that I felt it best that he eases up on the unhealthy eating. It is time now that his appetite is back to reestablish a more healthful eating pattern. Out the door went the beloved milk shakes, the big desserts, and the blueberry sodas! The sugar party is over! He was a bit resentful about it, but then a local gastroenterologist added his concern too that although Walter should gain weight, it needs to now be at a more measured pace. So a bit of sanity was added to the eating pattern while we wait and wait and wait for the gods at UCLA to have time to do a liver biopsy. Good ol’ over-populated Southern California! I have been used to the swift and caring action of the liver team in Nebraska, and it is a rude awakening to be back to being a number in Los Angeles.
And as usual when scared and stressed, I force myself back into: “What can we do right now?” So eating healthier was what we could figure out to do proactively. And I made a million (at least) phone calls to UCLA to try and get them to move Walter in sooner for the biopsy. If it is rejection, it is likely treatable, and the sooner we get it medicinally treated the better. But neither the doctors in L.A. or in Nebraska (even with me pushing them) will treat it unless they can establish that it is indeed rejection. So we are in limbo. Can’t treat without a biopsy. Can’t get a biopsy performed when it is needed. We couldn’t get the biopsy done at our local hospital either as they are not trained specifically in transplant related stuff. So it was UCLA or bust! Finally he got an appointment for this coming Monday afternoon. Then we will wait for the results and then… if need be, a possible treatment can be commenced.
It is our 23rd wedding anniversary tomorrow. We were excited because we had been invited to go as guests to the Big Blues Bender festival in Las Vegas. Walter was originally booked to play it, but we had to cancel his performance when we found out he needed a transplant. So the promoters invited us to come and attend just as guests. What a treat! We have not been together for many of our anniversaries, because it is prime touring season for Walter, so he was rarely at home for us to celebrate together. Now with the horrors of possible liver rejection in front of us, we saw our trip to Vegas go down the drain.
Yesterday morning, I was out on my morning walk. The phone rang. It was from the liver team. Another test had come through. I held my breath. The liver coordinator told me that Walter’s liver enzyme numbers were still elevated, but they were lower than they had been by almost a third! I did a pirouette and a jump that reminded me painfully of my age, and couldn’t wait to run home and tell Walter. What great news. Maybe it was the more healthful eating that had helped relax the liver again? Maybe it is not rejection after all? We were cleared to go to Las Vegas for the weekend, as long as we would be back to do the liver biopsy at UCLA on Monday.
So, Walter and I are in Las Vegas! We are surrounded with love streaming at us from the blues community, many of our friends who are here, and the promoters who treat us so very well. Last night we were together in the audience (imagine that!) and watched several brilliant performances. Guitar Shorty and Tab Benoit. Wow! We ended the evening watching BB King from a box seat, holding hands and tearing up. We have an anniversary dinner scheduled tomorrow night at a French Restaurant where we will eat surrounded by Picasso paintings. The thought of even considering going out to concerts and to a fancy restaurant with my love three months ago was unthinkable! And yet, here we are. We are doing it! We will just watch the saturated fat and the sugar intake!!! Walter of course has not had alcohol for 27 years, so he will toast in sparkling water. But I will have wine… oh yes!!!
Monday morning we jump in our trusted old Chevy and head straight from Las Vegas to UCLA for the six hour biopsy procedure. Results should be in later in the week. If you are the praying kind, we would much appreciate prayers that Walter’s new liver is not being rejected.
Thank you as always for walking with us. At this time of continuing uncertainty, we keep our eyes on the prize: Walter will be Walter again. These moments of community and joy are precious, even if shadows of uncertainty and fear are part of the celebration.
"Walter's Ability To Play Is Intact"
September 03, 2014
First day home.... the journey to reclaim the calluses and muscles begin.... the ability to play is wondrously intact.
"Walter Arrives Back Home In CA "
September 02, 2014
"Walter Attends His Own Tribute Show "
August 31, 2014
How do I begin to describe last night's tribute concert to Walter.... The tent on the riverside was filled to the brink with love. Friends and fans from near and far had come to take part. Thunder, lightning and a massive electrical storm felt invigorating and did not slow the party under the tent down! Walter was beaming to hear his band, Curtis Salgado, Danny Bryant, and our son play. And so many other brilliant musicians who donated their time and talent. Walter stood up for a while and rocked out to Danny's beautiful guitar music - I danced and got 6 months of hospital out of my system! I got to introduce two of the most genuine and brilliant human beings to the stage: Dr. Mercer (Walter's surgeon) and the amazing Dr. Shafer (Walter's Hepatologist). We talked from the stage about organ donation, Donate Life Nebraska was in attendance and signed up dozens of new organ donors. Thank you to Jeff and Vanessa - our Omaha Angels extraordinaire, Thank you also to the Blues Society of Omaha. Look at our faces... that says it all. We are so very grateful.
"Walter Attends His Own Tribute Show "
August 31, 2014
Photo copyright of Blues Cruzer. Walter was able to attend the event tonight, and even though they were in a tornado warning and it was raining for most of the time, Walter was able to attend!!!!! here he is with the blues artist Curtis Salgado in the shades who turned the Trouts onto the surgeon in Omaha!! Wonderful image!!
"Walter Is Going Home "
August 27, 2014
Today is the three month anniversary of Walter’s liver transplant. He is making real strides towards recovery. The procedure to remove the stent immediately helped the stomach cramps. And although his appetite remained small, he is now making progress there as well. Yesterday I took a picture of him at iHOP after cleaning off an entire plateful of pancakes! A first in probably a year!
Dr. Shafer declared yesterday that the latest batch of tests came back normal, and that this “concludes his desire for further testing on Walter!” Dr. Shafer, if you read this: Thank you for many, many months of sharing of your knowledge and experience to save Walter’s life, your support, friendship, and attention to detail. Everybody at the Nebraska Medical Center in fact has shown great caring humanity mixed with medical expertise. Thank you to Curtis Salgado for putting us in touch with Dr. Shafer and the Med Center - it saved Walter's life!
I have booked plane tickets now for Walter and I to go back home to live once again with our kids in California on September 2nd. This is really happening folks! Walter is walking mostly unassisted now; he eats more all the time, and finished taking most of his various nasty medications yesterday. This leaves him on just a low dose of anti-rejection medication that he has to take for life, vitamins and minerals. He works out in rehab gaining muscle every day. He is sore from the work-outs and giving it his all.
On August 31st, Walter’s band finishes their tour with Danny Bryant and our son fronting right here in Omaha. I have been on quite the media blitz lately to promote the event. Today at noon Central Time at KMTV (you may be able to watch it live by following this link: http://goo.gl/szIoxF ), and yesterday on NPR . More is coming up in the days to follow. This tour helps the band pay their bills during Walter’s absence as all the proceeds go to them, and it helps us bring awareness to a cause that we feel strongly about: Organ Donation. Donate Life Nebraska as well as the Blues Foundation of Omaha, Playing with Fire, and the Med Center are all co-sponsors. I think Walter will be able to join this party on the River. He really wants to be there to see the great bands that are going to perform: Walter’s band, Danny Bryant, Curtis Salgado, Laurie Morvan Band, our son Jon, and many other national and international brilliant musicians who are donating their time to help the causes. What a way to finish our almost five months in Nebraska! And a great way for the people of Omaha to come out and celebrate along with us! Eleven bands on three stages; an all day event! Dr. Shafer will introduce Curtis Salgado on stage and chat with me a bit about organ donation – and Dr. Mercer, who is the surgeon that performed the transplant will introduce Walter’s band. Kirby, who started this fundraiser has been touring with Danny and the band working as band manager extraordinaire! She will also be at the show. If you see her - please thank her for just being all around amazing!
Walter would not be alive and well today, had it not been for the organ donor who in death saved many lives. We send up daily thoughts and prayers to this donor and his or her family for their decision to turn loss into life for many others. Among them Walter! He is here now with a perfectly functioning body due to this man or woman. He is going home with me to the kids. He is going home to his life. He is going home to his music. He is going home to eventually continue touring - when he is ready.
Throughout this difficult time, my sharing with you through my updates has been a lifeline due to your love and support for us. I wrote a lot more than what I shared here, and when I get home I will start working on gathering my notes about the experience before, during, and after the transplant. Who knows what is in there. Ultimately it would be wonderful if what Walter, the kids and I went through can be helpful to others in similar situations and a book could be formed from it. That remains to be seen!
Thank you all for your support. You all played a part in this group effort to save Walter’s life. We are forever grateful.
"Stent Removed Successfully "
August 22, 2014
The surgery to remove Walter's tent went without complications.
"Life With A Capital 'L' "
August 21, 2014
Walter has been living with me in the rented Omaha condo for a little over a week now. The first day was magical. Walter marveled at being able to sleep in a comfortable bed without various medical personnel walking in on him at all hours of the day and night. We both loved being together again. We ate dinner out at a restaurant. Sharing each other in the world inspired conversations that were not about illness and procedures, but opened up to greater circles of awareness. It was intoxicating to feel connected to "Life" with capital "L" again. It is happening. But patience is still a requisite prop in our play.
A week ago, a new complication arose. Walter developed stomach cramps that had him bend over in pain. His hard-won appetite dissipated like water vapors over a boiling pot of water. I have had daily conversations with the staff at the Med Center since. And as we have monitored his condition, hopeful thoughts that this was just a nasty stomach flu have likewise evaporated. At my request, they have rescheduled a procedure to remove the stent in Walter's biliary tubes to tomorrow morning instead of next week. If this stent has become dislocated, it could possibly account for the pain Walter is feeling.
He is losing weight again, and although he maintains his physical therapy schedule and remains committed to giving it his all, he is struggling with having energy to push himself. Yet he does. He has earned an order of the Purple Heart from his wife! At 120 pounds he is probably mightier than I have ever seen him.
Through his pain and discomfort, he continues to engage in the world. Yesterday we went to Boys Town and admired the vision of Rev. Flanagan for believing in "problem" youths as equal in importance to more privileged ones. The notion that there are no "bad" kids, just bad programming resonated with us both. The organization continues to be very impressive and one that frankly blew our minds. We both found it important to remind ourselves of the countless Religious Institutions that work quietly and steadily to improve lives - and who succeed every day. Boys Town has a success rate of 85 %. Impressive indeed! And no child or youth will ever be pushed to leave their faith. Boys Town takes in kids no matter their race or religious persuasion. And they did so, even in the early part of the 20th Century! Since 1985, the institution has been coed. It has strategies in place for teaching at-risk young people the skills they need to succeed not just punishing them for what they lack. Hats off!
Walter remains motivated by love and desire to get back to playing for people. When we talk about it, he lights up. And music is constantly flowing through him. New ideas. New ways of expressing what he feels in music. He also can't wait to be back to our kids. We both miss them to the point that we are going crazy with longing for them. But they are doing well. Sarah is back in charge at the California Trout household, and Dylan just posted on his facebook page today: "Sarah loves me!" It made me so happy. I know she loves our kids as if they were her own, and it means the world to me that this little man knows it and feels it too. This journey has taught us all much about learning to open up to the love that exists in the world if we are not too stoic and stubborn to see and receive it.
We are hoping this stent removal tomorrow will be the last surgical intervention that Walter will need. Please include him in your thoughts and prayers particularly tomorrow Thursday around 8AM Central Time, as the amazing Dr. Shafer personally removes the stent. Please help us visualize that this will bring relief from pain to Walter. That he may finally be able to eat. That the bile duct stays closed. Thank you... for always having our back. We remain grateful for your continued love.
"Get On Up"
August 11, 2014
We had a great time out on the town on our date yesterday. Walter had a six hour pass where he could get out into the real world. First we went to the rented condo, where we will live once Walter gets released from the rehab facility, which I am happy to announce will be Tuesday.... TOMORROW!!!
We will still need to live here in Omaha for a while, but no longer in a hospital. He told me how he would like the furniture arranged to make it the most comfortable for him, so I moved beds, and struggled mightily lifting them over the rugs, but was victorious in the end. Now the bedroom is set up to spec. I know it pains Walter to not be able to help me lift stuff... but that will all come soon enough, and right now I am frankly strong as an ox!
We went to the movies and saw “Get on Up” – a movie about James Brown, and enjoyed it. Walter loved the movie theater with big, soft reclining leather seats. He kept commenting on the intensity of the sound and the size of the screen! Having been holed up in a hospital room for six months, the world outside seems that way: complex, overwhelming and loud. But don't think for a second that he wasn't loving every second of it!
Dinner was Italian, and other than hard wooden chairs that had me padding his seat with his sweat shirt and my shawl, a great success. It was a challenge to lug all that stuff around including my large purse, while holding on to Walter, so he God forbid wouldn’t fall down. But all went well, and we both marvelled at being out in public together... And he was awesome at walking through the rough cobblestone streets of Old Market, where we will live for the next month or so. He is walking FAST now. He is just wobbly, but he is determined! And my job is to both keep him safe from falling, and at the same time realize that he is more and more able, and needs less and less support.
How much help he needs changes daily. He is more capable every day! He even walked with me to an ice cream parlor, where they make all their own ice cream the old fashioned way in barrels swirling with ice and salt. They had vegan ice cream for me that was delicious! He had a hot fudge sundae for dessert and was stuffed as a garlic filled olive when I brought him back to the rehab facility. They called me twice…. We were late getting back…. We were breaking protocol by staying out 15 minutes later than we were supposed to…. We felt like rebellious teenagers trying to find our way with a set of disciplinarian parents… HA!
But tomorrow, other than weekly check-ups, labs, and out-patient Physical Therapy, we will be on our own. Tomorrow, life is getting one giant leap closer to normal. And this time, tomorrow seems totally within our reach. Marie
Walter "Sounds" Like Walter
August 04, 2014
I have been home in Southern California for a whole week! I have not had time to update you, and if you read on, you will know why.
I am just now again with Walter in Nebraska, and he is visibly more agile than when I left. He has no more drains from his abdomen. There is no more bile leak... A CT scan determined that conclusively last week!! And Friday he learned that the virus that destroyed his "old" liver was gone. No more Hepatitis C for Walter! The medicinal treatment he was on for three months prior to this eventual transplant was victoriously successful! He is eating a little more all the time, and is doing interviews almost every day. He continues his regimen of three hours of physical, occupational, and other kinds of therapy per day. He has a long way to go to regain his strength, but he can now walk short distances without a cane. A major milestone! He speaks now again with that full Walter voice. That just makes me so happy to hear. He has such a warm voice – big voice, and when he was ill, his voice was drier and brittle, as could be heard in the documentary that is part of the Blues Came Callin’ release. Walter still does not LOOK like Walter. But he sounds like him! YES!!!
My trip home was .... wow. On the lay-over on the way home, I got a text message that our house was full of fleas. Somehow - and we have no pets - fleas had taken up residence especially in my bedroom. I did a quick google on what fleas look like - have never had to deal with them before - and after seeing the online images - envisioned large shrimp-like beings crawling all over my bed. Nice!
I am not a naturally neat person. In fact, by nature I am quite the opposite. Growing up, I did not pick up my room until asked to do so - and then hated doing it. I preferred the kind of organization that was random.... I liked my stuff where I could see it - randomly strewn about. As the complexity of my life increased in adulthood with a few active careers simultaneously, husband and three sons, organization became more than a preference in my life. It became a matter of being able to efficiently do the things I wanted to do on a daily basis. To organize my life meant that I didn't have to spend my time looking for things. I could plan and execute smoothly.
My being a neat person is thus an adapted quality. It is something I taught myself to do when my more chaotic and animated inner self rather would go play. And the more orderly I made my life, the more disorder disturbed me. I started to interpret the random, "layered", and visible "systems" of my youth, as unwelcome distractions. My linen closet became organized and my towels all folded in a certain way. I would pride myself on being able to find stuff in my office with my eyes closed! Husband and kids could close the doors to their havens and largely have their more "creatively organized" spaces. But in my areas, order was and is a necessity. My bedroom is light, airy and white.
And now full of fleas!
And that was just the beginning of my home experience. Walking in the front door, boxes and boxes of shirts, CD's, DVD's, books, and a cubic yard of unopened mail greeted me. My office was full of boxes that the bookkeeper had left for me to get to the accountant (we are on an extension and so it is also tax time for us…). I discovered that my office had in fact turned into a "creatively organized" haven for oldest son. The towel closet was empty - turns out towels were all in piles on the floor in various "havens". The linen closet had likewise suffered severely - and weeks worth of dirty sheets were dancing tangled tango on the floor in the laundry room. I quickly found out that both dishwasher and dryer were wonky - and so using them required both chanting, praying and a bit of luck, the skylights were broken, screens were missing, the backyard overgrown, windows out of whack, hinges on cabinets falling off, etc....
This is what happens when you do not live in your house for months. And of course those darling kids.... organization has not become a necessity for them... yet. To help my sinking mood that first night home, Jon cooked me dinner and I had some wine. Screw the surroundings anyway…. My kids were there and they were fabulous!
Dylan went to work with baking soda and vacuum cleaner in the back of the house to immobilize and remove the offending flea infestation. My first night in my own bed was spent worrying about those shrimp-like things. I had a spray bottle of lemon oil and verbena next to me. I sprayed myself with it. I sprayed all around the bed with it. I woke up several times that first night and sprayed up in the air and all around me to repel the shrimp-looking fleas I imagined hiding in all the crevices in my bed. I woke up smelling and feeling just "wonderful"! But unharmed!
Sweet Dylan baking soda'ed and vacuumed daily until I persuaded a company to squeeze our house into their schedule and fumigate the place. Hopefully that took care of any remaining "shrimp".
Then I needed to get the van and trailer ready for the band tour of the USA. The boxes of merchandise needed to be organized and counted. Jon needed a guitar repaired, get driven to and from rehearsal across L.A., Mike had a show with his High School - and I managed to see it. Dylan needed to get ready for two weeks at camp. I am the only legal driver in our household right now, as Jon lives in Denmark and is thus uninsured stateside. There were months of bills to pay. That cubic yard of mail finally shrunk after I attacked it. The laundry piles dissipated and my linen closets, along with the kid’s closets, and my office started looking like themselves as I washed and folded incessantly. Boxes of bookkeeping made it to the accountant; visits to banks, post office, etc... And I still did not manage to do all I wanted.
I enjoyed our boys through it all. We had ONE major blow-out. I had a melt-down. Plain and simple! Jon had to be ready to tour with Walter’s band, Mike is off to New Jersey to stay with a friend, Dylan is off to two weeks of summer camp, I was trying so hard to also be mommy and cook for them…. Make them feel special… while making sure we all met our deadlines. I over-extended. I felt alone in moving things forward on time. I freaked out! It was not pretty. I anticipate crunch time better than the rest of our brood, and instead of explaining to them why it is important to do things at certain times - I bark out orders. And as they ignore my barks, crunch time gets closer. Then I bark out five orders at a time, and things implode as we run out of time. Yup, not pretty.... But after the waves of the tsunami settled and we talked things through, I believe we all learned something. I know I did!
The last night I was home, I caught Walter's band with Danny Bryant fronting it. They were brilliant – and it was so good to see them play Walter's and Danny's music together again! Friends and fans alike came out and supported them, and there was so much love in the room...Danny is an amazing guitar player and singer, whom Walter has mentored since he was a young teenager. Now Danny is mentoring Jon…. Talk about Full Circle! Go see them if you can as they tour the USA all of August.
Danny and Kirby spent a night at our house as well this past week. Hopefully unharmed by fleas..... I enjoyed spending an evening with them. Kirby and I both manage our husbands’ careers and we have a special bond, just as Danny and Walter are connected musically. I am forever grateful to Kirby for creating the fundraiser campaign that allowed us to travel far to get Walter a new liver, dual households while we are in Omaha, piles of medical bills, and also get the after-care now for Walter so he can re-gain his strength. She is a jewel.
As I got on the plane to come back to Omaha, I found out that my rented place there is ALSO full of fleas. I am not kidding you! A week before I left for California, the landlady had bought a loveseat at an estate sale. And it turns out it had fleas in it. So I am now living out of my suitcase in a friend's place in Omaha as we wait for a company here to fit it into their schedule to fumigate. Fleas in California - and fleas in Nebraska! I have never had fleas in my home before... and now suddenly in both AT THE SAME TIME!!!
So what is the message – what does it all mean? Fleas, unrest, disorganization, no plans possible, contingencies and extreme multitasking..... Is there a message for me to pick up here?
I don't know. All I know is that Walter and I continue to have much to be thankful for. He has a new chance at life. Truly! Now without the Hepatitis C returning, the prognosis is full and complete recovery. Our three sons are good people, who I trust and enjoy spending time with. The worst they did while alone in the house and with Sarah off, was to make laundry piles and somehow bring in fleas! And most of the rest of the time they saw friends, and mainly just played music together.... day and night. We feel surrounded with love from you - our friends each day. I feel this love extended at the gigs for Danny, the band and Jon.
No, I am not a naturally neat person. And life can be messy. I learned to love to be orderly, efficient and make deadlines; to be in control. But my life lately has been one big testament to the fact that there is much more to life than what I can anticipate and manipulate. Fleas, messiness, illness.... in the end it is just experiences. And in this crazy time of our lives, I am not bored. I am not lonely. I always thought that living fully was about sipping cocktails on a peaceful beach under a palm leaf umbrella. And I can’t lie, that sounds nice, but only as a brief break in the action at some point. As I am spraying lemon verbena on my countenance - and battling to-do lists the length of legal documents - I have to say, I feel alive... I feel this crazy life run through me with intensity and vigor. My priorities are getting another make-over. Organization and planning can be stifling if I stare myself blind on them. Life is about much more than appearances. I feel creative even if what I kick into problem-solving mode for is to fix appliances, dinner, laundry, paperwork, and skylights. And lo and behold, order can be restored, fleas can be dealt with, and schedules picked up after the storm settles.... much easier than restoring someone's health. Health, love, and fun times with loved ones.... now that is abundance.
In the end, “don’t sweat the small stuff” applies. All is well here with the Trouts…. All is really well!
Walter in Rehabilitation
July 23, 2014
Walter is now in a rehabilitation facility in Omaha, training with physical therapists for 3 hours per day! He is working intensely to get back to what he loves: Playing music for people - his personal life-long rescue from reality! His latest CD, documentary and book biography continue to get great reviews. Get your copy here: http://goo.gl/5YoCYo
July 19, 2014
Great news: Yesterday, we managed to get the financial aspects handled and Walter was immediately transferred to the state-of-the-art Rehabilitation Center here in Omaha, NE. It is on a hospital campus, so in case he needs it, the hospital services are available to him. However, their focus is to work on strengthening and rehabilitating exclusively! So Walter will be working with occupational and physical therapists all day, and will be able to progress more efficiently.
As we were waiting for the financial aspects of the transfer to come together, Walter got up and took a walk with me. He boogied down the hospital hall faster than he has been able to walk previously. He has a new leg brace that is helping correct some temporary issues with his right foot. I could barely keep up as I clung, at times almost horizontally, to his gate belt while he sprinted past supply carts and rounding doctors! Then he actually ate half of an ice cream sandwich! Both very encouraging events! Other than that he is continuing the tube feeding at the rehabilitation center. But the ability and willingness to actually put food in his mouth…. Awesome!
Thank you to all of you who continue to support us and surround us with your positive energy and love. We really feel it! And it makes a big difference.
I have Skyped and been on the phone with our sons, and they are doing well at home. The neighbors hear them…. I have confirmation of that too, as they are in the garage practicing, jamming, and playing music to their heart’s content from early to late…. Thank you patient, awesome neighbors!!! If all continues to go well, I may even be able to get home to them next week for a little while to partake in the festivities…. We’ll see.
The ebb and flow of life continues to pulsate through our lives. The rollercoaster ride continues. The intensity of the ups and downs is mind-altering! Literally! And I find that as I move through it all, pain and fear are not as scary as my fear of them. I think of the emotions as colors. Is there a bad color? No just different ones that all contribute to the rainbow of potentiality of experience. The trick for me is to keep moving through them and not get stuck. Writing here helps, as do your comments and love, and my morning walks. All of it helps me gain perspective to keep moving and seeing clearly.
As I was contemplating this analogy of emotions being like colors and the importance of moving through them and not get stuck, the universe provided me a beautiful synchronistic affirmation. On my morning walk, I altered my route slightly from my normal one. Suddenly, I saw people in work-out attire coming towards me, one more colorful than the other. When I got close enough, I saw that they were all going to attend the “The Color Run”. A 5K run here in Omaha that celebrates “healthiness, happiness, and individuality.”
Yesterday another affirmation: I had just finished writing about emotional lock-down in my journal, and I got up feeling I had moved through it, and I found a key to the front door that I had missed for a long time. It was hidden in my glasses case in the cloths I use to clean my lenses. Seeing clearly and wiping off my lenses of interpretation unlocks emotions to just be what they are: colors of the emotional rainbow.
The trek continues. We keep moving. And Walter is exactly where he needs to be now. What joy!
Slow Progress - But In The Right Direction
July 19, 2014
Slow progress… but progress nonetheless. We are currently awaiting a financial arrangement that if all goes well will make it possible for Walter to go to a top-notch rehabilitation facility to work extensively with physical therapists and other therapeutic disciplines on regaining his strength, endurance and balance. He still has drains in his abdomen and takes antibiotics and antifungal medications of various kinds to combat the threat of the remaining fluids in his abdomen to once again get inflamed. He still has no appetite and is fed exclusively through tube feeding, but all is going s-l-o-w-l-y in the right direction once again.
Walter has started doing interviews with journalists, and he spent a lot of time last week with Jon, our 21 year-old son, talking about music and guitar techniques. It has been awesome for Walter to reclaim this contact to his passion for music, and at the same time a painful one, as he realizes with each step how far he still has to go to be where he wants to be.
I have not given many updates lately. I have had our three sons here in various configurations over the past month, and I have been almost obsessively focused on being with them; being mentally, emotionally, physically present with them. When Walter and I said goodbye to them, with a day and a half’s notice back on April 10th, I knew that I sacrificed the privilege of being with our boys in a meaningful way; that we would have to rely on long-distance communication, and third-party help.
But I had no idea how tough this would be for me. For the last month where I have had them here with me, I have frolicked in the luxury of spending time with them, hearing their input on things we experienced together, feeling their life force and energy around me. It has nurtured my soul in ways I cannot express. I thank the Universe, God and all my lucky stars that these amazing young men are in my life.
And today, I took the remaining two to the airport to go back to California. It felt like piece of me was chopped off when I saw them disappear behind the machines at the TSA security check point. I felt grief in my chest and overpowering sadness stemming from the fact that Walter and I are not able to come home with them yet. When I booked those flights for them originally, it was with the expectation from the medical teams that Walter and I too could go home today. And it is just not time for Walter and I to leave Nebraska yet.
The last few days, I have felt an almost overwhelming fatigue, and I think it was the dread of having to let go of my boys again. Originally, when we came here on April 10th, my calculations based on statistical evidence were that we would be able to go home by July 1st at the latest. But statistics, organ availability, and healing are not always good roommates.
I cry when I see the favorite cans of iced tea left in the fridge that our 12 year-old picked out. I feel my heart ache at the sight of the keys and key chain that 21 year-old used to get in and out, now lonely and lifeless on the counter, where it before was bouncing from the clip on this belt loop. I check for updates on Facebook regarding our 18 year-old middle son as he travels back to L.A. from his school trip to Europe.
The pain is ever-present. And it adds to the impatience I feel with regards to the slow process of the healing for Walter. So once again, I return to writing. I return to updating you. I return to focusing on the power of love, the mystery of life, and the wisdom of learning from that which we can’t control.
And this reflection adds a bounty to my perspective:
The boys are learning a good dose of independence and how to be responsible in ways that they cannot learn when we are there to do for them, what they don’t even realize needs to get done. We are all learning patience in new ways every day. Our oldest son commented how we didn’t even have ONE single blow-out while he was here… HA! Normally his personality and mine are an explosive mix…. And I find that both he and I have learned ways of communicating and new levels of respect for each other. Our youngest is taking on arranging his work-out schedule and other activities … Our middle son will bond in new ways with both of his brothers; they will have a limited budget and need to cook, clean and manage the household by themselves. This is certainly a lesson in real-life that would elude them if I was there to make sure things moved along to my specifications….
When I do a gut-check, I realize that all is well. Walter is healing slowly. The boys have new opportunities for learning. I gain inner strength and endurance. Again, I find that patience and appreciation are key words that allow me to regain my emotional equilibrium.
I continue my walk by the river each morning. And as spring turns to summer, I feel every emotion possible. I will not turn my back on this feeling-- even when it hurts. I will not minimize my ability to cope by dulling or repressing what I feel. And as pain turns to resolve, and longing for our boys to appreciation that they are in the world, I continue walking.
Tribute to Staff of Nebraska Medical Center
A tribute to the staff at the Nebraska Medical Center. They played this video at their employee forum yesterday where I also spoke briefly. Walter was up and walked a bit today, resuming his road to recovery.
Walter's Plans For The Future
June 30, 2014
Snail’s pace…. The healing is frustratingly slow. Walter is now in so much pain from yet another internal infection that he cannot physically move. The progress he made with Physical Therapy and in general at rebuilding his muscles is reversing as he is now once again stuck in bed. He is in a horrendous condition. He screams in agony if he tries to move – and any thoughts of actually walking or sitting up are immediately shelved as soon as he attempts it.
Tomorrow he will have yet another procedure requiring full anesthesia where the doctors will remove his current drain and insert one in a different location. Infectious Disease Doctors are working overtime to determine the proper mixtures of antifungal and antibiotic treatments to most effectively fend off the hostile inner invaders.
Walter shows much grace and patience. I am happy to hear the doctor’s tone of voice has shifted from: “Let’s wait and see if this dries up on its own” to “We now know it won’t and we will deal aggressively with it.”
Doctors dance this dance every day: Knowing when aggressive measures are needed – and when wait and see approaches are ultimately going to be better at healing the condition. I am continually amazed at this juggle of the science and the art of medicine.
Our patience is tested continually. Walter is remarkable at taking it one step at a time. He is not spending his time burning up internally with fear or anger. He is just focused on the next step – the next procedure – and we both know that the day will come where no further procedures are needed and everything will be stable.
Slow and steady…. I am seeing firsthand, how a frustrated and anguished mental state could seriously get someone into a tailspin. And Walter and I remain focused on keeping positive while also pushing the doctors with questions and suggestions, and they in turn respond. Sometimes by giving us exactly what we want – other times by telling us why it is premature or not indicated. I am pleased that we are in a hospital where the staff appreciates our input.
We continue the trek. And still with no end date in sight, for Walter to be able to go home, the layers of contingency plans continue. We don’t know what tomorrow will bring. We don’t know if the antibiotics or the procedures will work. We don’t know if the new drain will do what it is supposed to do. We don’t know anything. We just continue. And continue to find joy and fun where we can.
Lately I have been blowing up rubber gloves in Walter’s room with Dylan, our 12 year old and putting faces on them with markers. And we goof around. Since Walter’s face is rather thin, the boys thought he looked a bit like Abe Lincoln and brought out a black top hat from California to really emphasize the likeness. Dylan has a container with a rubber-like substance that makes glorious fart sounds… And that has been getting a workout lately accompanied by our hysterical laughter echoing in the halls…
A the same time, balance and calmness accompany us as we crawl along this path of the great unknown. And just as a snail leave a shiny trail behind, we make every moment count. This is our reality now. We look back and see the ever-complex trails of where we’ve been. But we keep moving. And when the sun shines just right, the trails look beautiful. We find a glimmer of hope as we look back at the trail we leave behind. Not with nostalgia or frustration but with acceptance of the road traveled, knowing that each bump in the road and each rocky obstacle represent a lesson learned or an experience lived. Do we do the snail a favor when we take it and put it where we think it should be going?
Common Post-transplant Complications
June 23, 2014
I have felt a bit conflicted about writing updates lately. We humans don’t like complexity; we tend to thrive on easy and clear scenarios. Before Walter could not get a liver transplant and was dying. Now Walter got the liver transplant – and the new liver is doing great – yet there are complications; common complications post-transplant – but painful, patience-demanding complications nonetheless. We are navigating muddy waters at the moment.
I find that no matter how I try to put it – and how I try to write about it, I sound whiny and ungrateful. And nothing could be further from the truth. Walter and I have been gifted so very richly: the support from our community (you), the ultimate gift of life from the donor and his or her family, and the support of the medical team at the hospital. In fact we find it difficult to even fathom it all. We are overwhelmed by this every single minute of every day.
And Walter now will be able to rebuild his strength, reconnect to daily life, and work his way back to the stage. The liver works, all the internal organs are responding, and things are looking great overall.
BUT…. Since a bile leak wreaked havoc a few weeks ago, Walter has been in such agony: unbelievable pain from being filled with this caustic fluid that the doctors could not stop from leaking uncontrolled for weeks. In fact this complication has been the most painful part of Walter’s journey so far.
Finally a week ago, the doctors succeed in inserting the stent that now is minimizing the leak. Still much excess fluid is draining in tubes; Walter is fed through an IV drip – even now almost a month after the transplant he can still not get any food down. It has been impossible to do much retraining or rebuilding under these circumstances. The gastro-intestinal tract is traumatized from the original surgery, a second surgery that had them open up the entire incision again, and three endoscopic procedures. So healing is slow….
We face each day with more patience than we thought we had… Each day where Walter is fed through the IV and fluid is leaking feels like a year. At times it is hard to breathe from impatience. Yet, we remind each other to measure each positive development, and know that although slowly – things are moving in the right direction.
Two of our boys are now with us here in Omaha.I love their presence with me – and Walter marvels at them when we visit at the hospital. The connection remains unbroken. We are a family. We feel like a family. We talk, joke, and relate like a family. There are no limits to our closeness. In fact, we have an unspoken but palpable bond that connects us now more than before: A sense of traveling an unexpected journey together. Each of us along our own path – determined to learn, find new possibilities, and not let the difficulties get the best of us.
It is clear to me that kids mature and learn through that which we often attempt to protect them from. In the past, when our lives were moving along normally, I often felt an undercurrent of anxiety. What if this or that should happen? What would I do? How would I respond? I spent time plotting and planning what to do in order to insure everybody’s comfort; a continuation of safe passage for our brood. Yet in these stormy times when our ship struggles to stay afloat, we seem to connect to ways to creatively overcome and persevere that I could never have imagined, planned, or pre-determined. The kids, Walter and I continue to get through this in each our own way: we find support where we didn’t know to look, find kindness where we didn’t know it existed, find love to be strong enough to carry loads we didn’t know could be carried. I want to remember this lesson! I want to enjoy life uncompromisingly. Every day! We all have abilities to cope when it is time to row upstream, or brace for a tumble down the waterfall. But we cannot anticipate when, where, or how we will feel… and therefore any anxiety or time spent anticipating the downturns is wasted life energy.
We sail on. Life is worth fighting for. Illness, upheaval and death are part of life. They do not make us comfortable. But they can be teachers that allow us to embrace comfort not from a mindset of expectation, but rather with appreciation.
The Missouri river is overflowing right now. Tornadoes ripped through a few days ago, and severe thunderstorms have added to the flooding. I watch the lightning rip with electromagnetic force in the skies above me. The next day, I marvel when the sky is clear and the birds sing louder and more emphatically than I noticed before. The power of all of existence floods my awareness: It is good to be alive!
Cautiously Optimistic Message
June 16, 2014
Update on Walter's surgery: Surgeon just came in and said procedure to insert the stent in the bile duct was successful and things should improve now. If they don't they now have access to the bile duct and that in itself is a big deal! So, we forge on! But a cautiously optimistic message today! One speed bump down and we journey onwards. Boldly and determined as ever!
Post Operation Complications
June 14, 2014
It has been a rough week for Walter. Although the new liver is doing great, we have run into a complication. The infection turned out to be only a symptom of a more serious underlying cause: The bile duct is leaking where it was stitched together during the transplant surgery. It works fine by and large (good news), but there is a leak in the plumbing. This means that bile is, and has been leaking out of where it is supposed to go (from the liver into the intestine to help break down lipids and other components of the foods we ingest) and instead gone into the abdominal cavity. This noxious fluid wrecks havoc (and causes much pain) when it goes astray.
Wednesday a diagnostic endoscopic procedure was performed. Thursday the surgeons opened up the full incision again to get to the bile ducts and correct the leak. Well, they couldn’t. There was too much swelling, new scar tissue as well as calcification from previous infections that made the procedure complicated. So they chose to close it up again after they washed out most of the bile that had gone awry. Yesterday they tried another endoscopic procedure to insert a stint to fix the leak. Again without luck! Bile is leaking as I write this, and Walter is suffering. They are hoping to have things settle down enough by Monday to hopefully be able to try the procedure again and get the stint in place. Each time it is full anesthesia – and a lot of strain on the body.
I can tell that there is a good amount of disagreement amongst the various doctors and surgeons as to how much they should do how soon – and what level of action is preferred based on risk. And I consider it a blessing! When they hash out the various pros and cons conscientiously amongst themselves, we are likely to get a good outcome; some might be too aggressive, others too cautious. I rest assured that their middle ground compromise will be the perfect solution. At least that is how I choose to see it. I could easily get wrapped all up in the uncertainty of it all and find myself confused and confounded. However, when I rise above that – I see that this is a perfect way of meticulous doctors to find the best long-term solution working as a team. And I see nothing here but competence and deep commitment to good outcome.
In the midst of the pain and discomfort I also see that Walter has recommitted to healing while I was away this week. Being with Bob gave him a chance to gain new perspective and helped him step to the forefront by taking more responsibility for his part in the healing process. He feels more motivated and focused on the long-term. Not looking to me to explain – or asking me to deal with stuff – he is taking a more active role than he could previously when he was too ill pre-transplant. We fall into patterns of behavior, and since the transplant - although still not perfect - we are in a different phase of this and our roles as patient and care-taker also need to be refined and updated. So this break of me being in California has been just as beneficial for Walter as it was for the kids and me emotionally. It was time for Walter and I both to gain new perspective.
Bob is an old band-mate from the Mustang Ranch days (you who have the new book biography can read all about what a crazy time that was) – and it moved me to see what a courageous and powerful friend Bob is. In my opinion, it is not in the macho muscle-flexing that real courage is found…. But someone willing to go into a hospital and sit by somebody’s bedside day in and day out and offer their presence, support, and willingness to do what is needed and not offer simple solutions, impatient suggestions, or empty pep-talks – that takes guts! And Bob has it! Hats off!
So I was freed for four days to reconnect with the kids. I could not get enough of just looking at them. Mike had grown so much. He now is much taller than me. Dylan plays the drums for hours every day, and looks so strong – and his drumming rocks! They are doing very well... Truly... they have learned much from all of this - and have grown in many ways also internally.
The graduation day was awesome. Well, let me back up a bit: First there was the mail. Two months worth! If I put it in the backseat of our car, it would have filled it up to the windows! There was SO MUCH MAIL. Sarah had even taken much of the junk mail out. My fingers bled from opening up envelopes (found out then to use a knife…) and for a couple of days that was most of what I did: Open mail, sort mail, shred mail, and pay bills, more bills and then some more bills. But what a blessing: I could pay the bills! Thanks to the support from our community – from you – this was all possible and for each check I wrote, I sent a thankful thought into the universe.
Mike’s graduation: Sarah had made arrangements for catering and bought decorations, and we went to Costco and got last minute stuff. I felt an uneasy feeling of being not really present. There was a kink in my energy hose… I was distracted and not able to immerse myself in the moment. My being was split between the hospital in Omaha and my being in California with my boys. I was concerned with the news coming via texts from Bob about the bile leaks.
Walking around Costco in this half-present state, Steppenwolf started playing Born to be Wild in my purse. That is the ringtone dedicated to Walter on my phone. I picked up and we had a soul-connected conversation as I was walking there amongst flank steak, tortillas, and patio furniture. By the end, we both had recommitted to the outlook of whatever it takes, no matter how long it takes, we will do whatever we need to do to see this through.
And then I immersed myself in the graduation ceremony later that afternoon and the party that evening. I had so much fun. I was fully there – and so happy for Mike. I loved seeing the people who in some way had been and are important to him growing up. He had chosen who we were going to invite; it was Mike’s community of elders. And a few key people his age. It was a celebration of a rite of passage. I was able to let go of worry – what was my being miserable and full of worry going to do to help Walter anyway? So I just had a blast! We all did! This was about celebrating our son. And it nurtured my resolve!
Now I am back in Omaha. Put Bob on the plane this morning and went straight to Walter’s room. He is just miserable from pain. Monday they will try the procedure again hoping that the swelling and inflammation has decreased enough by then. The doctors' mission is to keep Walter well nourished over the weekend (tube feed and IV) and to manage his pain as much as possible. Still this morning, Walter managed to walk to the end of the hallway and back! Determined to do his part….
I hope you will join me in sending some healing thoughts and prayers to Walter this weekend. That the inflammation and swelling will ease enough that the doctors can insert the stint and stop the bile leak. As always, we are so grateful for each one of you. And the love you show us. It holds us knowing that you care.
Walter's Plans For The Future
June 13, 2014
Post by Marie. A few days ago, Walter's new album, and book biography was released along with a documentary on his life (included in the CD/DVD package). To celebrate the occasion, an amazing cast of musician took to the stage at the Iridium in NYC - and the full documentary was shown to the audience in attendance. Walter and I had created this little introduction for the event. To experience the amazing DVD filmed in Walter's home right before his hospitalization, go to www.waltertrout.com and click "store".
Walter's Plans For The Future
June 10, 2014
Walter Trout talks with his wife Marie post-liver transplant about what helped him get through the tough times. And now what his plans are for the future as he begins his road to recovery.
Heaven On Earth Is Right In Our Daily Lives
June 10, 2014
The day before I was going to leave Omaha to go home for five days for our middle son’s High School graduation, Walter suddenly started feeling horrible. He had double vision, blurry vision, extreme abdominal pain and muscle soreness that had him moaning. At first I thought that it was an emotional reaction to my leaving and tried talking to him about deep breathing, finding new opportunities while I was gone, accepting the muscle pain as his body’s natural response to the increased activity – and a way for the muscles to regenerate bigger and better; birthing pains of the new body wanting to emerge.
Well, after a little while of me trying this approach, Walter felt worse still. The tech came in and took Walter’s vitals, and found his blood pressure to be 60 over 35. He thought it was a mistake and re-took it a few times, but no… that was really the pressure. The pulse was somewhere around 180! Now digging a bit deeper they found his white blood cell count was sky-high. Two IV’s were put in, CT scans ordered as well as ultrasounds. Various fluids were eventually administered including a potent antibiotic. Walter had not developed a fever – meaning his body’s normal response to an infection was null and void.
After a transplant, large doses of various kinds of steroids and medications are given in conjunction with a cocktail of anti-rejection medication that effectively lowers the body’s normal immune response. And therefore scenarios such as rampant infections are common, especially in the early days after transplant. And it turned out Walter didn’t escape this scenario either.
I worked for a couple of hours changing my flight to a day later so I could wait and see if I needed to cancel all together, or things would settle down. Our dear and trusted friend Bob came in from Texas and I started transferring my normal care protocol to him, so if I was going to leave, Bob would be able to pick up where I left off. Bob also met our Omaha Angel Team, V and J – and so he has support!
Sunday Walter was better. Still had pain, but all the tests had shown nothing. The new liver continued to get great blood flow, and there were no obstructions in the abdomen explaining the pain. The infection started to ease up and blood pressure and pulse rate returned to normal. Whew.
I became excited. I would be able to go back to Huntington Beach now. I was going to hug my boys, spend a few days in our home after all…. Dream land!
And it worked. Bob held down the fort beautifully yesterday at the hospital with Walter. Walter’s release from the hospital has been postponed due to this infection. I left Omaha yesterday morning and landed at Orange County airport in the late afternoon and found my middle son standing there with the amazing Ms. Sarah who has cared for them in our absence better than I could ever have hoped for. Later I picked up Dylan from a field trip. Hugging those boys and Sarah was the best feeling. Michael had grown and inch – and Dylan looked tanned and stronger than ever.
I slept last night in my own bed for the first time in months. I brushed my teeth looking in the mirror in my own bathroom! Looking in the cabinet, where I had ripped essentials out to pack for our sudden elope to Omaha, I was reminded of the immense speed with which this life-changing trip happened. Monday I had made the calls and booked the flights, by Wednesday care for the kids and the house was set up and Walter and I were on the plane to Omaha. What a trip it had been so far!
The journey continues. We are not out of the woods, as the sudden infection reminded us. Life after transplant can be a “two steps forward, one and a half step back” for a while. It is a deeply “unnatural” thing to put in a foreign organ – and therefore all sorts of specialized aftercare is essential. And in that process we rely completely on the medical science that made it happen in the first place. Holistic and natural remedies will have their day in the sun eventually again, but for now the only path forward is trusting ourselves to the medicinal regimen prescribed. And the medical team at UNMC is state of the art! They care deeply to boot. Walter is in the best hands possible. I rest knowing that!
Now I will drive Dylan to school – and then I take Michael out for pancakes before he goes to his graduation rehearsal at the High School. Daily life at its best! I will even make it to get my hair trimmed – a first in six months! Heaven on earth is right in our daily lives…. I know it now. I thought I knew before – but I had no idea!
Walter Goal To Be Back On Stage In A Year
June 04, 2014
Walter continues to do very well indeed. His new liver is functioning GREAT. Now dealing with the magnitude of re-training a body that has severe atrophy. He was wasting away for months before his transplant, and the re-building of his body is a gargantuan task. However, he is determined and focused. The goal being back on stage in a year's time! The new album, chronicling his recent experience, came out in Europe a few days ago. It is about to come out in the UK and the USA (June 9th and 10th.) Here is a link to the good folks at Team Rock who are debuting the single from the new CD called Wastin' Away. Follow the link here and check out the new lyric video with pictures from the new book biography, and get a download of the single for free. CLICK HERE
Walter is Doing Well Four days after Transplant
May 31, 2014
Walter continues to do well. Today, four days post-op, the heart monitors got pulled off and all tubes and hoses are gone. He is once again a free and un-tethered man bound only by gravity. We are still waiting for his spleen and kidney to wake up more – they are still lagging behind, but everything else looks great. He is tired, but slowly getting more energy, and walking a bit further in the hallway each day. Walter is able to begin to enjoy food again, and his appetite is picking up. Doctors are talking about possibly discharging him next week.
It is remarkable!
Today, I wheeled Walter into the surgery waiting room where I spent the eight hours during his surgery. He wanted to see it. It seems surreal to us; we spent months of Walter being on the brink of death and now – in the course of those eight magic hours of the surgery and a few days of mercifully uneventful recovery – it has all changed. Walter now has a very good chance of living for a couple decades or more. His body will regenerate.
The morning after the surgery, I awoke after having slept deeply. I reached for my phone, still half asleep, and the thought went through my head: “One more night where the hospital didn’t call to let us know they had a liver for Walter”. As those thoughts went through my head, he usual colorless feeling started to invade my solar plexus. And suddenly, as I unraveled from the temporary amnesia of deep sleep, I realized that it had already happened… Walter got his new liver yesterday!
For the next five minutes, I could not stop myself. I walked around in circles with a smile from ear to ear listening to my voice saying: “oh my God, oh my GOD, oh MY GOD, OH MY GOD!” I realized that when the hospital hadn’t called me overnight it just meant that all went well with Walter’s immediate recovery from the surgery. What a breakthrough! It had finally happened!
People ask me, how I feel now. And the overwhelming feeling is relief. Deep, penetrating relief! There are still many hurdles to jump in the coming days, weeks and months. Recovering from a long period of severe illness and then major abdominal surgery is a massive task. But as before, we take it one step at a time and celebrate each milestone.
Yesterday I googled all the scary scenarios that are attached to cirrhosis and end-stage liver disease: low energy, muscle loss, lack of appetite, liver failure, sepsis, coma from encephalopathy, ascites, infections, fluid on the lungs, internal bleeding, etc. Walter experienced all of them! And many die each year from the disease. I knew that. Yet to me, I had only room for one possible outcome: For Walter to get a liver transplant – and for him to survive long enough to get it. I had tunnel vision; extreme focus on that singular outcome! I did not talk to anyone other than my mom, sons, and a few people involved in urgent business on the phone – my entire energy was directed towards one thing only: Walter’s survival.
After having spent every day in a hospital with Walter for three months, the world now opens up to me. One step at a time, I start re-focusing. Walter will still need help for 24/7 for a foreseeable future after he is discharged. A dear friend is coming out to help, while I go back to California in a little over a week to be home for our son’s High School Graduation on June 11th.
Walter and I continue to be overwhelmed with gratitude for the support surrounding us. We had no idea that it would be possible to be held so lovingly by our community. It is a wonder to us. And each day, we receive love, support, more love. We open to it. Your kindness and concern hold us right now. It helps us get through. It strengthens our focus.
So now, as relief sets in, so does awareness that each day gives Walter and I new potential scenarios to consider. Instead of being fearful of what tomorrow will bring, we live in the knowledge that going through this most challenging of times also has brought us gifts of love and support from people near and far. The experience has shown us the beauty of the human spirit. We have experienced a powerful and encompassing sense of community and goodwill. Thanks to your love, energy, prayers, comments and support, I have never felt lonely even as I traveled alone into the unknown with Walter.
And now that we are moving into a new phase, I remain thankful for the mysteries of human life. I am bowled over by all we have found as we have fought for life. I have learned so much. And I know that just as Walter is reborn to new life – so am I.
Walter on KETV News
May 28, 2014
See KETV News broadcast Click image below
Walter is Doing Well After 48 Hours
May 29, 2014
Walter is doing well. 2nd day out of surgery - 48 hours out - all is going according to plan. Walter was up walking out into the hallway today - and tubes and lines are coming off at a rapid pace. Doctors are very happy with his progress. Walter is fighting on!
Walter is Out of ICU
May 28, 2014
Walter Made It Through Surgery with an A+
May 26, 2014
The lead surgeon just came to see me. Walter made it through the surgery with an A+. They are now just watching and cleaning up. Heart and lungs held up great. New liver was a "great fit" and is doing well. Dr. Mercer confirmed that they rocked out to Walter's music throughout the surgery! In an hour I can visit with him in the ICU. Then I will probably not post anymore for a while as I turn my entire attention to Walter. Thank you for walking this road with me. I have felt your love, energy and support throughout.... Now let the healing begin!
Walter - In Surgery Now - May 26th 09.30am
May 26, 2014
The call came yesterday at 1PM. And it was understated indeed:
- This is your nurse coordinator. I just want to let you know that we updated Walter’s MELD score and it is now 31.
- OK, yes I noticed it had gone up slightly since yesterday
- And, in fact we have an offer to run by you….. We have a liver that looks to be a good match for Walter.
Of course I was out driving after buying a new warm blanket for my ever-freezing husband, and I fumbled around to figure out the speaker setting on my new phone. So I just managed to yell into the ether:
- I will be at the hospital in 5 minutes…. Call us back then…
- Yes, I have another 10 minutes to let them know
I wonder why it is in these kinds of situations that it is impossible to find parking…. I skidded around the hospital parking lot with Walter now on the phone plotting with him what questions to ask when she called back, if I didn’t make it to the room in time. And that it was my opinion to accept. From what little information the nurse could give me about the liver, I thought it sounded like an offer to grab.
Parking spot was secured just in time for me to walk into the room when she called back. We accepted the offer. And were told that a doctor would come by in about an hour and get the consent forms signed. Then Walter would probably “hit the table” as they call it around midnight.
The doctor never showed, and neither did the consent forms. However according to the staff we were still a go. Walter could not eat or drink, he was given various vile potions to reduce his potassium level in the blood, and given other kinds of IV fluids.
And then we waited.
By midnight, we called the liver team to find out what table we were supposed to “hit” when and where as things seemed rather low on the action scale now almost 12 hours after accepting the offer. We were told that probably in a couple of hours. 2AM we were both restlessly tossing and turning. 4AM Walter was rather persistent in wanting to know what was going on – and requested to get out of bed and move around a bit too. So I wheeled him around the halls a bit – and then the call came that it was time to finally sign those consent forms. The physician enlightened us that the surgery was scheduled for 8:30AM pre-op – and surgery was about to start around 9:30AM.
A major hurdle had to be dealt with: The incoming liver – once it arrives at the hospital – has to be inspected for damage during transport. A biopsy is performed and it is very possible to have the surgeon reject it. Dr. Mercer, the surgeon, popped out and declared that it looked to him like Walter was in good shape, and so was the incoming liver. Walter was equipped with all kinds of heavy duty IV’s and lines and wheeled into the OR.
And now I wait.
But Walter is in surgery! The incision has been made meaning they are going forward with this. It is happening! Right now! The surgical nurse just let me know that they are playing Walter's music duing the surgery.
Thank you for your love! We have felt it all these past many months - and continue to feel it. I will update you when Walter has gotten through the first 48 hours post surgery, and let you know how he is doing.
In the meantime, just know that we are filled with thankfulness for this opportunity. To the donor and his or her family. To you for your support. To those of you who have signed up as donors - or who already are. To the staff here at UNMC. To Curtis Salgado who helped us get here. To the people who we honor this Memorial Day - who know what it is like to live life in service to causes greater than ourselves.
Walter - We Continue The Fight
May 23, 2014
Walter and I continue the fight. Today, he took his longest walk yet – and sits in the chair more and more. He is in pain from yet another procedure yesterday to remove fluid from both his right lung and abdomen. They hit a nerve in his ribcage – and it is excruciating. But you don’t see that stop him… He is soldiering on.
Today, I couldn’t wait to get to him. When I walked into his room this morning, and I saw him sleeping there, my heart skipped a beat or two…. I am so appreciative of having this man in my life. Later this evening, we put on a movie and watched it in the room. This has become a nightly ritual. As I reached over to put the blankets up around his neck – he is cold all the time – I looked him in the eye and said: “I am just so happy right now!” His eyes responded and his entire face lit up in a smile as he told me: “I am happy too!”
The walk on the edge, the constant uncertainty, and the feeling of having very little control over what happens feels almost like a friend that you battle with for a long time, and finally learn to appreciate. We don’t know when the next emergency will hit. We don’t know if the perfect liver comes in a month – or in ten minutes. But we have taken charge of what we can control, and a sense of contentment is palpable. The uncertainty has become a teacher of how to find joy, happiness and contentment in the mayhem; how to have glimpses of beauty that overpower the beeping sounds of the heart monitors.
Our liver transplant coordinator, the lovely and sweet Sarah came into our room today looking a bit like a Japanese cartoon character. She had just had her eyes dilated – her pupils were like black espresso cup saucers. She let us know that Walter was now back with a high MELD score again. I didn’t ask if he was at the top of the list yet. I don’t want to know… I am done driving myself crazy with anticipation and expectation. It happens when it happens – and we just do our best in the meantime.
Sometimes I wonder what the purpose of all this is… What lesson do we need to learn? What is it that we need to do or think or make happen for the universe to give Walter that liver? What kind of prayer do we need to apply?
And I stop myself. There is no cosmic button in the darkness that suddenly when pushed will open up the floodgates of juicy livers to come pouring our way. Instead there is possibility in each moment to find joy, beauty and happiness. Even through the pain. And I am grateful for this abundance. The moments of happiness are like hot water on a teabag that allows us to steep and develop character and flavor.
And as many before me has found, I must agree that happiness is not situation dependent. We cannot ensure it by seeking protection and avoiding danger. It is developed in a heart that opens to its possibility.
Walter - We Are Continuing The Trek
May 21, 2014
Not much to report right now. We are continuing the trek. Yesterday was amazing! Walter walked four times and joked with the nurses and me. He felt pretty darn good. Today was less glorious. He was tired, sore and fought to do his three walks. But he did it – and is such an amazing man. I love him more each day! Really I do! I don’t know how that can be – but to see Walter go through this with such grace, determination and grit moves me to my core.
We continue our focus on what we CAN impact. And not what we cannot.
Walter continues fighting through each step, each breath, and each food substance he consumes. Each day he is here, is a day we have a chance to get him that liver.
I just looked and saw that the youtube link of my plea for organ donation has gotten a lot of views…. And I have received some feedback that the video has helped convince some to sign up – and even changed a few minds out there. That’s just great! If you haven’t seen it yet – or haven’t shared – please do so, and help raise awareness about this issue. You can click here to see it.
My walk continues by the river.
ODE TO THE MISSOURI
Named for the people
With dugout canoes
Walking here now
I learn from their teachings:
Pushing against the current
A canoe rider
Is not meant
To only float downstream
I feel this river
As I watch it without
Flowing through existence
I walk on this
In awestruck observation
And grateful participation
Immersed in experience
SPINNING HARD HATS
In concrete high-rise buildings
We sit behind steel-framed glass
And look down upon the river
In our offices
We occupy our existence
With all kinds of
We have no time
For ground level
We watch the river
As if it were broadcast
As a pretty picture
On the window screen
By our desire for
We sit in conference rooms
Wrapped up in our own
Delusions of grandeur
We know priorities
In our twice removed condition
We delude ourselves
With endless mind-boggling
TO THE RIVER TEACHER
Human expectations can dam you
Our sense of entitlement exploit you
Yet no matter how
We try to contain you
Your flow remains
It is when we understand
That whether we flow
Or paddle upstream
You are us
And we you
In our heads
Stuck and entitled
Glaring at you from
Cemented Ivory Towers
You welcome us to ride
Flowing and rowing
That clears the air
Expands our lungs
And helps us appreciate
Each sacred breath
Marie tells Walter's Story
May 20, 2014
Walter - The Consummate Warrior!
May 19, 2014
Walter is the consummate warrior! These past few days, he has been up and walking although it hurts and feels like he is going to keel over. I walk behind him ready to catch him. He is getting stronger! He has been sitting up in a chair and watched movies with me; he has been sitting up in a wheel chair while I wheel him around the hospital. Doctors drained fluid from his abdomen yesterday – and he feels a bit better with a bit more room to breathe. They also had to give him more plasma to help him not bleed out during the procedure, which reduced his MELD score yet again. I made sure to have him re-MELD’ed before the procedure, and is now listed a bit higher again. Not sure if he is at the top – but higher than a few days ago nonetheless. He battles, and I battle with him. Each step is uncertain, but we do what we can.
Buddhists attempt to live life free of attachments. And it should be painfully clear by now that I am very attached to a particular outcome of Walter’s current situation: A full and complete recovery and a return to full and joyful life for Walter here on earth! So I am not a good Buddhist! Neither do I claim to be one. I am attached to my kids, my husband, and my family. And wish to be! I am attached to the idea of the earth surviving the abuse we put it through, I am attached to principles of fairness and equality, and I am attached to the idea of living full lives realizing each of our potentialities.
However many times in my life, I have found that when I attach myself to projected beliefs and wants that are beyond my control, I feel anxious and painfully afraid. This is the case more than ever in this current situation. Walter’s survival is dependent on many factors beyond my control. And as we were faced with the stark realization that Walter moved down the list a few days ago, it was more important than ever for us to re-focus on what we can do instead of what is beyond our control.
So Walter walks through his pain. And gets stronger. I walk through mine – and get stronger too. We both put our trust in the medical teams surrounding us – and we question them and push them to explain. And there is a silver lining: Both Walter and I feel a bit more in control and hopeful because we do everything we can, and let go of what we cannot.
I know; it seems like I spiral between despair and resolve. Yes! I do. But each time I spiral back into resolve, my resolve seems to get a bit stronger.
Later today the video that was recorded of me talking about Walter’s situation and the (needless) lack of available organs will be ready to share. I will post it here and hope you will help me get the word out. That is another thing Walter and I CAN do: Help raise awareness! And having your help and support means the world to us. Literally!
Walter - No Longer Top Of The List!
May 18, 2014
Walter is no longer at the top of the list as a transplant candidate in Nebraska.
All the blood transfusions and the untold amounts of units of plasma have cleared Walter’s blood temporarily, so the blood tests that are used to determine the priority for transplant hopefuls show Walter healthier than he has been in three months…. On paper that is. The reality of course is starkly different. Unfortunately there is no way to compensate for this discrepancy. I have approached the doctors repeatedly about the injustice in the system, and asked if there isn’t something they can do to explain the urgency of his need? But no, the answer is no. The system measures three factors that are hidden in the blood – and since Walter has all new blood flowing through his system from the many transfusions, he shows up as deceivingly healthy on paper.
Next to me in bed lies the casualty of this discrepancy. Yesterday was tough for both of us. As the doctors “re-MELD’ed” Walter and we were told of his new number, the sense of hopelessness and disbelief in the room is hard to describe. I cried like a baby. Walter was just sort of numb. He was then told that his only chance of remaining on the list – now for a foreseeable amount of time as others with higher MELD scores get priority – would be if he got much stronger in a hurry. He is so weak from all the recent emergencies that the doctors are close to taking him off the list altogether due to his lack of physical strength. And they need to believe that he is strong enough to withstand the operation.
So it has been prescribed that he has to get up out of bed and walk three times with a walker each day and sit in a chair most of the day. This is very difficult for him, as he has no strength, no energy, and has a big open wound on his backside (not exactly fun to sit on). Bear in mind also that this is the same doctors that a few days ago ordered him on absolute bed rest in order to not bleed out again!
Through my tears yesterday, as I found out that this is just how it is – and there is NOTHING I can do about it, I helped rally Walter’s spirit yet again. A sweet nurse, Katie, helped Walter devise an affirmation that she wrote on his whiteboard: “I am strong and I’ll get through this!” And the affirmation works for me too! Walter has decided to fight. But everything he does causes him untold amounts of pain and discomfort. We have decided that instead of looking to “tomorrow” at this point, we are simply focusing on each day that Walter makes it through and remains on the list – whether at the top of it or not – each day that Walter is able to fight hard enough to physically qualify to remain on that list, is a good day.
I will post this – and then I will get ready to help Walter go through his regimen. Armed with my mantras I continue one step at a time: I am a patient walker…. I walk boldly and with determination…. I am strong and I will get through this.
And Walter will too. So help me God!
Walter - Good Signs
May 15, 2014
Walter can breathe again. The infection is under control. The blood loss has stopped. Walter is gaining weight like crazy…. All good signs! His physical situation has stabilized and the doctors are walking around proud as peacocks that they have saved his life repeatedly in the past week.
As they should!
We are relieved to be on the other side of the recurring emergencies. And for Walter, relief gives way to boredom and impatience. He is still stuck a body that is confined to being in bed, and feels that a liver is no closer now than it was two months ago. Yet, he is much weaker, and we know well that the next emergency is right around the corner unless he gets that offer for a new liver soon. This knowledge adds to the sense of urgency.
I had a dream last night that the doctors and nurses had determined that it would be best if I started taking Walter’s medication instead of him, as I might be able to tolerate it better. He would then somehow get the benefits vicariously through me. Then I attempted to clean several hospital rooms where Walter had been. Half-empty boxes of CD’s, magazines and guitar paraphernalia were all over the hospital on shelves in various rooms, and I spent much time running around locating Walter’s stuff and putting it all in one place. As soon as I organized it, we had to move rooms again. And the process started over.
Like Sisyphus, Walter and I feel we are repeatedly pushing virtual backbreaking rocks up impossibly steep mountainsides, only to watch them tumble back down as soon as we reach the pinnacle. The sense of futility is exhausting.
My phone rang at 4:45AM and my heart leapt: “Maybe this is it!” But no! It was Walter telling me that he was bored. I suggested a couple of movies for him to watch in bed, and told him I would be there as soon as I had taken my walk. But when I got there, Walter was asleep and he had not wanted to watch the movies. He couldn’t keep his focus on them. Everything in his body aches from lying down for two months without much of a break.
By the river this morning, I reminded myself of all the beauty in my life: our kids, Jon, who now calls me every day on the phone from Denmark, offers his support, and sends his love to his dad and I, the love in our family, the amazing greenery of spring all around me, the clear flowing water of the river, the support of our friends both here in Omaha (our angels), and our consistently amazing friends at home. My mom, who calls me most mornings from Denmark on my walk – Richard and Brenda, Kirby and Danny in the UK… You out there reading this, people who help boost our spirits by signing up as organ donors, the many people praying for Walter. All of your faces flashed before me and comforted my spirit.
We now also have a chartered air ambulance set up for transport back to LA, should UCLA come through with a liver before the hospital here in Nebraska. We are all set to take full advantage of being dually listed.
These blessings keep me centered and grounded in a greater long-term reality than the Sisyphean short-term daily grind that Walter and I face at the moment.
I have been getting messages from people that just cannot understand that there is not some easier way – that there isn’t a better solution than to just sit around and wait here in Omaha. And it is hard for me to come to terms with too. And in this case, there just isn’t more I can do. To be listed in more transplant centers would mean that we would have to travel there, go through tests that take four days or more, and then wait and see if they would list Walter. There is no reason to believe we would be any closer to a new liver in another location than where we are right now, where Walter still is at the top of the list. And a liver might become available in NE while we would be in Florida going through tests. Really, Walter could not travel to Florida right now anyway. “Can’t you just go to China?” – Same answer – Walter is not a good candidate for a long flight right now. In China and other places they have a black market for livers, and there is some doubt as to the legitimacy of the way they procure the livers, and also the quality of the transplant centers. “Can’t you look on e-bay or Craig’s list for a liver?” No. All livers are registered by a nationally controlled data base and they allocate the livers based on regional need. The region we are currently in gives us as good a chance as we will find anywhere.
So the wait continues.
Walter - A Donor Liver, But Not Suitable
May 13, 2014
Now out of the Intensive Care Unit, Walter is coping with having to keep the faith that the transplant will eventually happen. His resolve is wearing thin. Today, he underwent a procedure to once again have fluid drained from around his lungs. He has so much accumulated liquid that he has to sit up in bed to (barely) breathe. And because he is so emaciated sitting up in bed hurts his back. If he tries lying on his side, he feels like he is going to drown.
The bleeding is under control for now. But the doctors are watching carefully and working to prevent recurrent episodes of internal bleeding like those that happened over the weekend. This means that Walter is not allowed to eat solid foods – or get up out of bed. He is confined to the bed, where he struggles through each breath. All the procedures and all the prodding and probing hurt him. And he is just tired to the bone. Now that today's procedure is done, Walter can breathe a bit better, and for the first time in days, he is finally asleep. I think that will help with both strength and resolve when he wakes up again.
This is what a prolonged wait for an organ is like in a nutshell. You put out a medical emergency fire, only to find that you have flooded something else!The body cannot regulate itself, and tries to compensate. Yet the normal feedback loops and mechanisms don't work, so it ends up over-compensating creating a spiralling chain reaction of continuous crises.
I have started working with organizations that seek to improve the availability of organs by encouraging people to become donors. Today they shot a video where I talked about what it feels like to love somebody who is waiting for an organ transplant. If you try to put yourself in the shoes of someone whose husband, wife, daughter, son, aunt or uncle becomes in need of an organ transplant, it is possibly easier to grasp how a collective effort to sign up for organ donation is a win-win. On the other side of this, there is a silver lining to the horror of losing a loved one knowing that their organs helped many others experience a rebirth; a new chance at life.
It is my hope that sharing the nightmare of what Walter is going through can help more people become aware of how this shortage of donated organs causes undue suffering for so many. Imagine if the doctors could just pick and choose between suitable organs, and people could get transplanted before they got so sick that they need daily emergency procedures to survive. This is the easiest and one of the most powerful actions we can do to help end suffering for many. AND there is no cost and no sacrifice involved! It just takes a few minutes to sign up.
The staff here at the hospital are doing the best they can to help Walter. They are repeatedly talking about how baffled they are that Walter has not been transplanted already. It is really just one of those freak things that happen, because deceased organ donation is still not commonplace. We appreciate your prayers, but each time one of you let me know that you signed up for organ donation – or helped someone else to do it – that makes my day! We can proactively do something about making sure that needing an organ transplant is not a matter of playing repeated games of Russian roulette.
If you are in the USA, you can sign up by following this link.
SIgn up in the UK HERE
Walter - A Donor Liver, But Not Suitable
May 11, 2014
There has been a drought in America’s breadbasket for about a year. The land of the central states provides large amounts of the world’s wheat, soy and corn production and it has been devastated by lack of water from above. Since Walter and I have been here though, the rain has been quite plentiful and has greened the land. Trees and flowers bloom, while the grass shows off a vibrantly fluorescent green. It is stunning!
Walter’s doctors are in agreement with me, that statistically speaking, Walter should have been transplanted two or even three weeks ago. But they report that they have been going through a dry spell with regards to donated organs. Today, a liver did get offered to Walter breaking the drought. However, the doctors turned it down as it was of poor quality; it was not healthy.
Walter has not bled internally today, and we are happy about that. Yesterday was the third day in a row where he had to have a procedure to fix internal bleeding. His blood numbers hold tight and we are just now observing a persistent cough. So far it doesn’t seem to be pneumonia, which would be a contraindication for surgery. His blood pressure is also a cause for concern as is fluid accumulation around his lungs and in his belly. He is beyond tired and weak. He did sit up in bed for a while and watched a clip of our oldest son play guitar and sing with some friends.
When he has a particularly tough time, I ask him to envision playing music with the kids again; showing them things on the guitar. We can travel places in our minds when our bodies are stuck. And we can picture ourselves in those situations as if they were happening right now. And this seems to help a little bit from time to time. We also made it through half of a Jack Nicholson movie: As good as it gets!
Today’s offer for a liver broke the dry spell. That organ donor provided other vital organs to people in need, even though the liver was not suitable for transplantation. One of these days….. We are getting closer… it will a healthy new liver for Walter. Outside the skies are grey and water pours from the sky. Thunderstorms are blowing through, and a tornado watch is in effect.
Marie - “1pa·tient: able to remain calm..."
May 09, 2014
In the previous 24 hours, Walter has received 13 pints of blood and untold bags of blood products, plasma, platelets and albumin. He has undergone two procedures to fix internal bleeding. The liver, when not functioning right, cannot process the blood normally, so it backs up in other places. This makes it potentially gush with arterial force from venous blood vessels. It is another side effect of end stage liver disease, and what we are currently dealing with. Walter is still in the ICU, and they are working hard to symptomatically treat the gushers when they appear.
Of course the lasting treatment – the real fix is… you guessed it: A liver transplant!
So we have reached a new low yet again. The risk of internal bleeding is ever present. Thank goodness we are in a place where they can fix these as they happen for now.
I am calm. I give Walter of my calm as much as possible. I feel plugged into a state of being that does not predict outcomes or attach itself to likely scenarios. I work as much as I can on crossing all the t’s and dotting all the i’s to do what I can to help Walter – but when I have done what I can, I just sit here in Walter’s room and add my presence for him. This is my main job. And it is beyond full time.
I write, I work, I help the nurses when possible. I ask questions of the doctors and add my input on what has been observed previously. I have a few good leads now on getting chartered planes set up – and should this option become available to us, we will get Walter flown one way or the other. Thank you again, community for being awesome!
The wait continues. However, right now it doesn’t even feel like a wait. If I think of it as a wait, there is a subtle level of impatience in my consciousness. And I cannot be calm when I am impatient. Maybe that is the reason that a person hospitalized or ill is called a “patient”. As in the definition in Merriam Webster:
“1pa·tient: able to remain calm and not become annoyed when waiting for a long time or when dealing with problems [..]; done in a careful way over a long period of time without hurrying.”
I work deliberately to stay calm in the face of the hurricane. I see much suffering in the faces of family members that visit here in the hospital. I hear their hushed voices in the elevators speculating on possible outcomes and what might happen if, if and if...
I refuse to go there. I put one foot in front of the other. I am a patient walker.
Marie - Tears Are Not A Sign Of Weakness
May 08, 2014
Tears are not a sign of weakness. And this morning by the river, my tears are flowing. I have a sense of being stretched emotionally. And my heart opens to the intensity. This is my blues, and although I don't share it in song, writing is cathartic; it is my vent – my escape valve.
As the tears flow, my resolve strengthens: I continue this walk next to Walter doing everything I can.
Last night, Walter was readmitted to the Intensive Care Unit. They can better monitor his blood loss and extremely low blood pressure there. Yesterday it hit a new low: 74 over 45! He is stabilizing once again. He is still on the list for transplant.
Now Walter is number 5 on the list in LA and I want to work on finding a way to charter a plane to bring him back home, should LA come through with a liver offer before Omaha anyway. If you know of anyone with access to a private plane or good information on charters, please e-mail me. We would need him back to UCLA from UNMC in six hours or less from phone call to operating table!
This has now ceased being a rollercoaster ride and is more like a repeating rocket launch into space with immediate re-entry into the burning friction of the atmosphere!
I walk this morning, writing this on my phone. Right now, I move over the pedestrian suspension bridge spanning the Missouri River and connecting two states: Nebraska and Iowa. Each step is mixed with a sense of pain and determination. Ultimately, I can only do so much - but good Lord, I am going to do what I can to keep Walter here.
If I can walk across a river, back and forth between two states on my morning walk on a piece of human engineering while writing on a mobile phone to communicate with you via the internet, the technology likewise exists to make medical wonders happen.
But there is a human factor. It is a wild card. And it doesn’t need to be there: the availability of organs for transplant. Many people simply don’t know that they are not a donor – or never considered to be one.There is such a shortage, and it is mainly due to lack of information and education. Each dead body can help up to 50 people with everything from corneas to bowel donations. Each dead person can save the lives of 8 people in need of vital organs (kidney, liver, lung, heart...). But they can only give this gift of life, if they have registered as donors.
If you read this and you have not signed up for such donation, do a quick google search on organ donation in your state or country: then sign up! You won't need your organs once you are dead. But you can save many lives. This is reincarnation in real time; a selfless act of common sense that takes nothing from you or your loved ones. And when enough of us do this small step, it will be a huge leap for humankind: A small act that cumulatively will save other families from the intensity of the rocket ride.
Marie - I Keep Walking
May 06, 2014
Walter has been riding a downward trajectory for months now. Actually since May of last year, we have constantly watched him deteriorate. Every time he hit a new low, we thought that this was as low as he could go. And each time he plateaued on this new lower level for a while. We then assumed that his body would bounce back (as a healthy body does). But maintaining has been best case scenarios. Then days or weeks later, a new crisis hit that would take Walter further down. Each time, we thought that this was the bottom; that this was as low as he could go; that this was as stretched as he could get physically and as stretched as we could get emotionally as a family. And then, without fail, a new crisis occurred that rattled Walter's bones and took him lower. Each time he stabilized, his body was weaker. Each time, Walter and I thought that this is all we can handle; that we cannot possibly endure more uncertainty, more upheaval, more changes, more pain, and more humiliation. And each time, we are proven wrong: Yes, you can handle more. There is a lower point. There is more uncertainty around every curve.
I have nothing new to report today other than we continue to wait. Walter is again stable at this new lower level; he is conscious and able to speak and remember more all the time, and the infection (now positively identified as an e-coli) appears to be in check. Dr. Schaefer was on the phone with the liver allocation organization again this morning to keep reiterating Walter’s priority status.
As we wait, I stay strong. A lot of my strength comes from my walks. Walking out of downtown towards the river in the early morning hours, I leave living in cement, brick and mortar behind for an hour. When I leave my condo, the fluorescent lights from the parking garages still hold power against the newborn daylight.
I walk because I can. I walk because I get out in the air and feel the breeze on my skin. I walk so I can hear the subtle changes in the birds' song as the weather warms. I walk so I can get to an open, greening space where the confines of white hospital walls and beeping equipment are put in context. I walk because my body needs to move. I walk because it is a reminder of the temporary nature of all things: each step is a new beginning and nothing is fixed. I walk because I feel the firmness of the earth carrying me and the gentle squeeze of gravity holding me.
I walk because it is a reminder of the macro; the big picture. When in a hospital setting all day, it is easy to start taking that micro reality and confuse it with all there is. I walk so I can have a reference frame. Walter's suffering right now is intense. And my total involvement with it, is likewise life altering. So I walk to know that there is more.
There is worse suffering than Walter’s or mine: mothers watching powerlessly as their children are being beaten and brainwashed to form militia armies of child soldiers, species losing their habitat and fighting to keep their offspring alive, dying people without hope of getting medical treatment....
We are lucky by comparison.
As Walter fights each moment to survive, I am his antenna to a greater reality. I am his life line to the outside world. I am his umbilical cord to the kids. I am his translator and facilitator. I am his helper and his supporter. I am his love.
If I my mind and focus get lost in the restrictive confines of the hospital setting, he loses this proxy grip on the greater reality. My job is to take care of me so I can take care of him. And the walk in the morning is my medicine and where I connect to a sense of equilibrium.
So I walk. I walk for me, for Walter, and for all those who love him.
The walk is a living symbol like the river of a willingness to keep moving and never get stuck.
I keep walking!
Walter - A Difficult Day
May 04, 2014
Yesterday was a difficult day. Half-way through the morning, Walter started getting increasingly less responsive again. He was shivering. His temperature was normal – which is high for him. Within a few hours he had a full-fledged temperature of 102. They quickly performed yet another set of X-rays and blood tests. Walter kept fading. Around 4PM they gave him some medication to get his temperature down. He was very agitated and his heart rate kept going up and down (A-Fib as they call it). It was dark times. I felt helpless. If a liver transplant patient develops an infection, they get taken off the transplant list until the infection clears. It was not lost on me that Walter had just made it to the top of the list, and now he was at risk of them taking him off it again.
Around 4AM today, they put him on antibiotics. By then his temperature had normalized even without the medication, but the blood test had come back with a positive and rare bacteria in the blood. More than likely from the PICC line (a kind of heavy-duty IV in Walter’s arm). So there is an infection and they are wasting no time. My heart sank. I heard the nurses talk as they handed over the shift from one team of nurses to another that this probably meant that he would be taken off the list.
Nonetheless, Walter is such a fighter. He was much clearer this morning, and announced to me that he wanted to get up out of bed. So we got him installed in a chair – he did a great job walking – even after losing another 10 lbs and having been unconscious off and on since Thursday… He sat down at the window with me and we discussed the culinary options available to him. It is in times like this that it becomes clear what a person is made of. And the gentle, patient, loving, and dignified approach that Walter shows to me and the hospital staff is awe-inspiring. He smiles at me and even fired off a couple of jokes and dropped the f-bomb today. Woo Hoo! And then he gets up, decides he is going to walk – and he just does it! The fighter spirit is intact!
At 8AM, Dr. Schaefer walked in. He is the doctor that I have been communicating with since Curtis Salgado gave me his pager number in advance of us coming to Nebraska, and who gave me the extra bit of confidence needed to embark on the adventure of Walter and I coming here. Dr. Schaefer was instrumental in Curtis’ liver transplant adventure, which also happened at UNMC, and a highly respected and experienced doctor; the kind that silences the other doctors in the room, and the nurses just stand by and watch in awe. He is a genuinely warm and caring man.
He looked at Walter and commented on the importance of good nutrition at this point, how beautiful the pink flowers on the trees are, and that we found a bit of infection. I was waiting for the words: So we have taken you off the list for now. But they didn’t come. So I asked. And his answer was that there was no need to do so; the infection seemed under control. “One must strike while the iron is hot”, he mused like an expert blacksmith.
So much of this is up to personality and confidence of the doctors. And Dr. Schaefer is obviously bold enough to keep Walter on the list, seeing that the infection seemed to be minor. An infectious disease specialist will be consulted in the matter as well. Again, I am keeping my mind from coming up with fanciful scenarios.
And then I looked at my e-mail: A picture of our oldest son, Jon, our tour manager Andrew Elt (also a great musician), and Danny Bryant (yes, he is Kirby's husband -and a great blues guitarist if you don't know that) together getting ready for rehearsals in advance of the benefit concert tonight at the Shepherd’s Bush Empire in London….They and many other musicians are rocking the Empire tonight… I wish I could be there to watch them blues and rock for Walter. We have been promised a recording so we can “tune in” later.
The wait continues, and so does my amazement at the love and the generosity of our community; you! And Walter hopefully is very close now. I’m with Dr. Schaefer: Let’s do this!
Walter - “I want to do that again!”
May 02, 2014
Thank you for all your concern, energy, thoughts and prayers. Walter can talk today. He is still not 100% himself, but it is a huge improvement from yesterday. I am so thankful to just hear his voice. It is not the booming larger than life voice that it will be again – but it is his voice nonetheless. He opens his eyes and relates. He tells me how happy that I am there – and that he wants me to be with him. Thank goodness I am able to be here!
The teachers at the Academy of the Performing Arts were able to make an exception and send me a youtube link to a recording of the four songs that our son Mike did last night – and will do for the next three performances. Walter and I had tears streaming down our faces as we watched our son drum his heart out along with the other talented kids. Those kids rocked the stage last night!
Friends have offered to go in my name and bring my spirit to the show tonight and tomorrow night. Dylan along with other friends of ours were already scheduled to go – so Mike will have lots of “his people” there supporting him. And Walter and I can follow along via the youtube links… That just made our month!!!
The liver transplant coordinator came in and confirmed that Walter is at the top of the list. Now it is just a matter of time.
Today is a better day. Still not “tomorrow” – but I wanted to get the message out to you – that Walter is back “online” and aware! He is a fighter! He continues to amaze me with his determination. Today we watched a youtube link of him playing Red House…. And he looked at me and said: “I want to do that again!” Amen to that Walter Trout. Amen!
Walter - Still Unconcious
May 01, 2014
My cell phone rang at 6AM this morning. A quick look confirmed it was from the hospital. I felt a careful sense of optimism as I grabbed for the phone and expected to hear: “We have a liver for Walter!” But my phone froze. I couldn’t pick up the call. The phone was unresponsive. So after a few fumbling and tired attempts to answer it, I realized I had missed the call. And then the voicemail came in: “This is Doctor K.J. We are having some trouble waking Walter up; he is unresponsive, so we thought we would let you know.”
No new liver call this time. The confused and tired state of mind that Walter had been in yesterday had worsened. Now he was unconscious.
I spent the day at his bedside without making contact with him. He is deep in a place and I couldn’t reach him. Today was the first day for tears for me in a long time. Seeing him there, but without being able to sense him, was painful.
The doctors are not too worried about it. They say that this is par for the course, and the good news is that Walter is now first on the list. They assured me that the encephalopathy will reverse once a new liver goes in. They tried various other approaches to see if we could get Walter conscious – but they were unsuccessful. His vital signs remain good; he moves and has good muscle strength. His brain has not been deprived of oxygen at any point. They did a CT scan to make sure that all looked good upstairs – and it did. One very experienced and trusted doctor said that he had seen patient reverse completely after months in this state once the liver transplant took place.
Because Walter is not conscious, I decided that I don’t want to leave him here without anyone to be his advocate this weekend. Since he cannot speak for himself, I cannot leave him alone. So I called our travel agent and cancelled my flight to go see our middle son play his final show at the High School music program. That hurt too.
I called both of our sons who I am now not going to see tomorrow, and had a good talk with them. They understood. I know they were disappointed too. This disease is making it impossible to plan anything. In February I had a trip planned to go see our oldest son in Denmark and be with my mom for her birthday. Had to cancel. We had to cancel the tour I had booked for Walter and the band for 2014. The ripple effects of this disease touch so many more people than just Walter and I. Our sons, my mom, the band, our crew, fans, friends, promoters, agents, record label, publicists, you reading this right now…
I feel the pain, the disappointment, and the sorrow. There is no way of sugarcoating that. I feel for the people who are affected by this. Most of all I feel for Walter who is struggling to stay alive in a body that is polluted.
And such is life sometimes, without any easy solutions; without any quick fixes. Life can be complex, full of riddles, full of heart ache, pain and incomprehensible twists and turns. Things don’t always go the way we want.
And then just writing all of this, I also know that because things are difficult now, they won’t always be. While Walter is unresponsive right now, he won’t always be. Because I feel sad now, I won’t always be. Because our kids are disappointed now, they won’t always be. This too shall pass.
I deliberately avoid the “what if” scenarios that could be constructed by an anxious mind. I go by what the most likely outcome of all of this is going to be: A new liver for Walter. It is not in the sadness, the disappointment, and the sorrow that I would lose my fighter spirit. However, I know that if I allowed my mind to go on unsolicited trips into worry-land, I would quickly drain every last bit of hope and strength out of my being. So every time I feel my mind wanting to spin its worst-case scenarios – I stop it. I only deal with the known – and leave the unknowns to the universe.
Who knows what happens next? I continue to do all I can. And I will deal with it as it comes. I remain at Walter’s side to help him in every way I can. I tell my sons that I love them… so very much. I stay on top of business decisions as needed. I send thankful thoughts of gratitude to all of you who care to read these words. I continue my walk whether it rains, pours or shines. One step at a time! Boldly and with determination!
Walter - Tomorrow?
April 30, 2014
Today marks three weeks since Walter and I arrived in Nebraska. I wish I had better news to report. Walter is reaching a state of encephalopathy that is unnerving. He is confused, tired, nauseous and uncomfortable. It is due to very high levels of ammonia in his bloodstream. Since the liver is not doing its job filtering the impurities, they go into his blood and therefore also to his brain. It will go away when they insert that new liver!
Today was a day of spending time in his presence but not really making much contact. He was frustrated and sad, because he could tell that he could not communicate much, and felt powerless. I ended up doing what I often do in those kinds of situations: I climbed in bed with him and just held him. I rocked him gently. We fell asleep like that, and holding his frail body was the best way of connecting today. We both felt better. Our bodies communicated where words could not: the love between us nurtured us. I study his back in those moments, and I can see every vertebra in his spine, the contour of his shoulder blades, and the tendons in his neck. I watch each labored breath, and I feel his body cling to life in spite of all it is going through. I am not anxious. I feel at peace knowing we both do everything we can. I feel love for him and that is what I concentrate on.
Yesterday, we decided that instead of being frustrated about the long wait, we would simply refer to the operation as happening tomorrow. Always tomorrow! And thus assume that it is right around the corner. When tomorrow comes and no liver is available yet, we will still refer to it as “tomorrow”. Much like in the movie, Groundhog Day, where learning to make the most of what is, breaks the spell. Time stands still for us until “tomorrow” actually does arrive with that liver. One day, it WILL be tomorrow and the surgery will take place. And we will not get any further ahead of ourselves than “tomorrow”.
And maybe that magical tomorrow will be soon. I have a feeling that we are getting closer. And I wouldn’t be surprised if it happens when I am LA over the weekend! Yes, that is right….. The doctors have assured me that it is OK, and Walter insisted a few days ago that I get the ticket to go. I will leave Friday and come back early Sunday. Here is the reason: our middle son, Mike, who is an excellent drummer, has his final show in the Academy of the Performing Arts before he graduates High School in a month. He has been in this program for four years, and the final show is significant--a rite of passage-- for the seniors. Walter and I could not imagine not being there for that. Mike will be performing throughout the show each night this weekend.
I am working to shake the feeling that I let down one of my loves no matter what I do. It is the final show for Mike. And it could be surgery time for Walter without me there. However, Walter’s doctor assured us that it is OK that I go. He feels that no matter what, the staff at the hospital has everything under control, and even if the surgery happens while I am gone, they got it covered. I don’t know…. Walter’s point of view is: What if you sit here all weekend, and the surgery doesn’t happen? Then you will kick yourself for not being there for Mike. It is true. I wish I could clone myself to be in two places.
And we will see. I am still very torn about it.
I made another visit to the grocery store today. Buying staple foods, cooking, and writing is my new therapy; glimmers of normalcy. And as alone as I feel at times, I am covered in the love that you send my way. When you read what I write here; I feel that you surround us with a protective sense of calm.
I watched a boy about Dylan’s age play in the rain on my way back from the grocery store today. He was wearing red shorts and a yellow shirt that sat tight around his bulging belly. He seemed a bit clumsy and insecure. He was somebody’s son. And that somebody might not even realize how lucky they are to have him in their lives.
No matter how far my loves are from me; one in Denmark, two in California, one with me here in Nebraska – they are on my mind all the time. And I never ever will take any of them for granted for a second again. And by extension, life in general! I marvel at the life force; the hawk that flew over the river this morning, the blossoms on the cherry trees, the wind in my hair, the rain on my cheeks. Why is it I spent so much of my time previously concerned with the shortcomings of my life or of my loved ones, when each breath and each encounter, even with perfect strangers, each look, each smile, each telling sigh, each drop of rain, each flower, each moment is a magnificent gift?
I knew that before – yet I didn’t have a clue!
Walter - Good News-Bad News
April 28, 2014
The good news first: The doctors did not find any infection in Walter’s lungs. No pneumonia either! Saturday, Walter had a procedure where 1.5 liter of fluid was drained from around his right lung. Afterwards there was still plenty of fluid left around his lungs, but he can breathe a bit easier. This means that he can also be a bit more active. And he is also able to think more clearly after other incentives were applied over the weekend. His kidney function continues to impress the doctors.
And that is part of the bad news:
The fact that Walter’s kidney function is stable might reduce his chances of getting top priority for the next available blood type A liver. And there have been no livers lately. I know, I sound like a broken record.
Today I felt as if I had a scream building inside. I put our 12-year old Dylan back on the plane this morning after a glorious time over the weekend. I felt powerless as I watched Mr. D walk away from me out of the gate and onto the plane. I saw his lip quiver and his eyes tear up as he hugged me goodbye. And that was tough. He got home just fine. And he is fine. But letting him go ripped something inside of me.
The scream has to do with acceptance of the unknown. I thought I had that part down, but it seems to be a multi-layered learning process. A part of me believed that coming to Nebraska meant that Walter would have his operation within a couple of weeks tops! And here we are two days away from three weeks in Nebraska. And we are no closer to a new liver than the day we arrived. Still listening to teams of doctors rejoice over Walter’s amazing kidney function and his resilient body that just refuses to let go of waht is left of liver functionality. And at the same time having the doctors carefully explain to us--as if this were the first time we heard it—that his strong kidneys means that Walter might not be at the top of the list.
And there is Walter; my love in the hospital bed emaciated, yellow, and one minor bodily mishap from total disaster. Watching him maintain at this level is heart wrenching. So seeing Dylan walking down the plank to the plane today hit me emotionally: We may be here in Omaha for much longer than I anticipated. It would be so much easier, if we had an end date to plan for. But we don’t. All we know is that we will be living here a minimum of four to six weeks after the operation, whenever that will be.
When the kids get their summer vacation, they can come out here and live with us. But still, we are dealing with unknown quantities. And that would mean that they would be removed from their friends and activities. Not ideal either.
And there is that scream building again: the sense of a catch twenty-two.
So what to do?
I left Walter’s hospital room a bit earlier than usual today, found a do-it yourself carwash and washed and vacuumed the car with all my might. That car is spotless now!
Then I searched and found an excellent grocery store! Since we arrived here in Omaha, I have not done much cooking. On a subconscious level, I have held on to a sense that our stay here is temporary, and going out to dinner at night reinforced this notion of being a short-term visitor. However as time wears on, it is not healthy for the budget – and those ever-present Nebraska Sweet Potato Fries are not exactly good for the waistline either! I am not one of those people, who get skinny when under stress. No, not me: I retain fluid and plump up. And the contrast is stark right now: Walter is the ever-shrinking man, and I: his ever-blimping bride! Enough is enough and change must come. At least here is something I can do to improve my part of that situation:
A massive amount of brown rice and vegetable soup with red lentils, garlic, ginger, and tons of spices are cooking on the stove right now! That will be my non-waistline-sabotaging comfort food for a while. Taking charge of that aspect helps. Writing these updates is therapeutic for me as well.
We continue this trek Walter and I. One step in front of the other! The bold and determined action right now is found in the details: a pot of soup, fingers on the keyboard, spending as much time as possible at Walter’s side, continuing work with Walter on the new album release from my mobile office at his bedside, texting with the kids…. The hardest action is often non-action. Or being unable to do what you really want to do. The Odyssey continues. The scream ebbs and flows. And that is just how it is right now.
Walter - Still Waiting
April 24, 2014
Walter still has a difficult time breathing. And he is extremely tired right now. He can barely bare to carry a conversation. In addition some words are not easy for him to find. It is a common side effect of this stage of liver disease. The doctors are working on finding some solutions. It will all go away when he gets that new liver! Today however, is one of those days, where the going is tough. Walter feels trapped by a body that will no longer adequately support him.
We did have a few good hours earlier in the day. We sat together and reviewed the book that British Music Journalist Henry Yates has put together around the stories Walter told him about his life. It is an actual biography, and a very lively one at that! Pictures from throughout Walter’s life fill every page making it an even more engaging read. We are both pleased with how it turned out. It will come out in June along with the new album. This is exciting to us. Although Walter is on a temporary side track – his work continues in the world.
Our youngest son, 12 year-old Dylan is flying out here to be with us over a long weekend. I will take him to the Zoo here in Omaha tomorrow. It will be awesome to have a bit of time with him. He is flying as an unaccompanied minor – and the airline will help him with his connection in Salt Lake City. I have written before about how much it pains me to be without our kids…. And so this is a bright moment for me.
Although it saddens me to live separated from our kids right now, there are some positives in this situation. Of course first and foremost, Walter and I are beyond thankful that we have found a wonderful person to stay with our kids in our absence. Sarah rocks! This allows some peace of mind for Walter and I. But there are also possibilities for the kids to learn to be more self-reliant. To understand that life is not always going to be predictable and easy. That there are bumps in the road that we can navigate – we don’t need to let the hurdles stop us. And that mom and dad love them – even when they cannot be there in person. We can be connected to our kids even from afar. And that being a family unit sometimes requires sacrifices: It is not always going to be gratifying. There are needs greater than our own in the big picture of the family collective. I think kids learn from this.
I know I learn from it…. I am taking nothing for granted. I live in a constant state of thankfulness. I am thankful to you in our community who make it possible for us to pursue the option of an out of state transplant for Walter – and to afford us the possibility of dual households, the option of paying for caregiver for the kids, for Walter when he is not in the hospital, for the rehabilitation now and after the transplant, the ubiquitous medical bills that pile up, medication costs, insurance co-pays and deductibles, etc. But I also feel a constant sense of gratitude to all the people who chip in – taking our kids to and from events, our amazing angels here in Omaha (J and V), doctors, nurses, social workers, people at home at our kid’s schools – our kid’s friends’ parents, darling neighbors, church communities, etc. The list goes on and on.
In fact, Walter and I have never felt this held, supported and loved as we do right now. If that isn’t an amazing discovery here on the edge!
As Walter sleeps, I sit here at his side taking life in. Life on the sidelines! We have hit the pause button on life as we knew it. But thanks to all of you in our lives, this pause is also filled with possibilities, love and hope.
Walter - Back In Hospital
April 23, 2014
Yesterday as the day progressed, Walter became more and more short of breath. He couldn’t eat either. After three separate visits to the Outpatient Radiology department for X-rays of his lungs, Walter’s hepatologist decided that it would be safest to admit him again to the hospital to manage the fluid build-up. There was fluid around the lungs, and large quantities in his abdomen as well.
As I wrote here earlier, it is an extreme rollercoaster ride we are on. For almost a year now, just as we think Walter is stable and doing better, his wellbeing takes a tumble. This is typical of end-stage liver disease. It is very difficult to deal with on all levels.
Once at the hospital, four different teams of nurses tried to insert an IV in Walter last night to administer diuretics – his veins are now so tiny and have low pressure. Another side-effect of a bad liver. So they poked and poked his poor arms. He is taking it in stride. It is almost as if he is getting desensitized to it. But they managed to shoot him up, and the fluid is now slowly draining from his lungs and his belly. The diuretics seem to be working. This is good.
When I walked into Walter’s hospital room this morning, he was sitting up watching the History Channel and eating oatmeal! A sure sign that he is doing better. And the blood work also showed that his MELD score is now a bit lower. This means that even here in Nebraska, he might have to wait longer than we would like. Yet again, the MELD scores are very fluid (pardon the pun) and can change overnight. So we are learning to not really get caught up in what they are or what it means. We find that the more we can apply a fluid mindset to the situation (puns aplenty today), the better we can hold on to our sanity!
I take a walk down by the river every morning if at all possible. This morning the skies looked grey – but weather.com had predicted rain for days and none had come. So I set out defiantly without a raincoat. As I reached the Missouri River, the rain came. It wasn’t just rain that pelted me, but cold gusts of wind went right through my shirt. My first inclination was to tense up and give in to fears about catching a cold. But then I just opened up to it. I felt the cold rain hit my skin and marveled at how alive I felt. I started walking right into the rain with a sense of absolute joy and delight. I laughed out loud! I must have been a sight to behold: face turned toward the rain, arms outstretched, walking straight into the onslaught laughing. But I didn’t care. Probably a good dose of my Viking heritage activated right there!
Walter and I keep going. We keep doing everything we can. And when we get caught in the rain, we just keep walking!
Walter - Waiting for "THE" call
April 22, 2014
Here’s what life waiting for a liver is like: You get 20 minutes to answer the phonw when your lucky number comes up. If you are away from your cell phone – or otherwise miss the call in those first 20 minutes, they move on to the next person on the list! And you missed the boat! So I live my life with my cell phone attached to my being – day and night. I have panic attacks when I am in the shower – or am in a noisy place where I cannot hear my phone. I wake up many times at night and check to make sure my phone’s battery is charged, that the ringer didn’t accidentally turn off – or God forbid that I just somehow missed the call. Then once awakened, I lay awake wondering what it will sound like when that call comes in: “Yup… we have a fine 2.5 pound liver available for you to pick up at the counter” – or “Good evening, this is your lucky day – come on down and party with the surgeons on the first floor” – or “We have what we believe is a good match – why don’t you come down and see for yourself”.
Who knows what it will sound like when that call comes in. Who knows how we will feel? Who knows what thoughts will rummage through our minds when we wheel Walter off into the unknown? A liver transplant is one of the biggest and most all-encompassing surgeries a person can undergo. And there are real risks involved. But it obviously is the only way forward.
In the meantime, we work hard to have Walter stay as strong and healthy as at all possible. He has been pretty amazing at regaining his strength lately. His kidneys are much better, his appetite has improved, and he is starting to walk around more – still assisted – but walking nonetheless. Lately he and I have been getting out – going to select restaurants and stores. Physical and Occupational Therapy comes by everyday and works with Walter on regaining muscle strength. This is all good for improving his chances of making it through the surgery and the aftermath. The healthier he will be going in, the quicker he will bounce back. So again, this is one of the reasons we are very happy to be here in Nebraska, where you don’t have to be at death’s door to be considered for a transplant.
Still Walter is a very yellow fellow. And still in need of a new liver to even come close to regaining his health. So we wait. Every time my phone rings, we both look at each other with that look of: “maybe this is it?"
So far the call hasn’t come. But one day it will!
Walter re-connects to music
April 20, 2014
Walter is right now listening to his song: To Begin Again. And the song seems relevant today: The theme of resurrection is on my mind too. How nature sleeps every winter, and then wakes up as the warm sun and gentle spring breeze softly caress each blade of grass and each bud waiting to burst open; greening the world with the glory of new, crisp, delightful life.
In Denmark “Good Friday” is called “Long Friday”. I always thought it was a better name for a day where Jesus was brutally abused and murdered while his family and friends powerlessly watched. It must truly have felt like the longest day. But maybe there is wisdom in the words chosen in the English Language: “Good” Friday. The Dark Night of the Soul is when we feel completely lost; that God and humankind alike have forsaken us. We are in the darkness of despair. Yet, it is precisely in these dark, lonely days that we might be the closest to God, to new life, to a new beginning, to resurrection.
It is a theme we know well. Walter and I long to begin again. We wait and we wait. I miss my kids so bad that every cell in my body screams. I miss Walter being strong and powerful. I miss his laughter, his larger than life persona. Walter misses living in a body that is not painful and bloated, emaciated and weak; a body that has a working filtration system that takes care of ridding his blood of toxins. He misses making music – connecting to others through music – he misses life on the road. We both miss our life with our family at home… it seems like heaven on earth to us now.
But spring and Easter remind me that resurrection comes when we least expect it. New life comes. Shift happens! It is in the times of our lives that are “Good Fridays” that we learn to appreciate what he have, and endure the pain so that we can once again embrace the joy. We move through the darkness to fully appreciate the light. We move through the agony to learn to never take a pain-free day for granted again! We wait. And eventually the dark and dreary winter will be done. Birds will sing their praises above, and nature will rise out of its slumber: Easter morning comes – and when it does we all get a chance to be released.And then we can begin again.
Walter discharged from hospital
Yesterday was another busy day. Walter was suddenly discharged from the hospital, as his condition is stable.
The staff at the Nebraska Medical Center has done a phenomenal job at restoring kidney function and helping Walter’s condition stabilize overall. He is feeling stronger – and as mentioned before also mentally more optimistic and strong now that his chances of getting a liver have improved with the move out of California. However looking at him breathe, I can see that fluid is making it harder and harder for him to breathe. Fluid accumulates in his mid-section and around his lungs as a side effect of the liver disease.
Yesterday I interviewed and met with three different home care agencies and found one that Walter and I both liked. And before the day was over, we had hired Yelena to stay with Walter and I 24/7 and stay on top of all his medication needs – and whatever else he needs help with. We do not want Walter to fall or be left unattended for even a split second. Therefore, having Yelena with us is a necessity. The hospital here in Omaha offers an option to stay on the hospital grounds in an attached hotel style environment – and so this option worked well for us.
The more quiet and private facilities at the hotel are perfect – and Walter can get better sleep. He is also moving about a bit more with me – today we went to a kick-ass cafeteria on-site… I mean AMAZING place for a hospital. They cater to a Vegan such as me – and had tons of options for a more normally eating dude like Walter... It was great to sit at a table together and eat a meal. Hasn’t happened in the last month for us!
Soon physical therapy comes by to work with Walter on strengthening – and a nurse just came by and took all his vitals and drew some blood for labs. This is a good arrangement for now.
We both have a tendency to want this wait to just be over. But we also know that it is important to enjoy each day – just as it is. Who knows what will happen next. And if it should all suddenly be over – we want to know that we didn’t waste any time. So even in this situation, Walter and I take time to find each other’s souls and communicate on all levels. Yes, we are missing our kids. We miss being home. We miss our lives as they used to be. We miss life with music and with people around us. BUT…. We have each other, and we have much to be thankful for. Even now! And we remind each other of that. Life has a certain beauty here on the edge. A fragile, tenderness! A sweet gentleness. And we drink that in, knowing and praying that we will once again get back to life as we know it soon.
April 011, 2014
Walter travels to Omaha
It has been an eventful week so far!
April 13, 2014
Thinking about a dear friend
Thinking about a dear friend who is living in the zone of uncertainty following a breast cancer diagnosis, the words below came to me as I was watching Walter sleep in his hospital bed. It is for anyone who knows the feeling of having to just wait, and accept not-knowingness as a temporary but all-encompassing fact of life.
We walk blinded
Sand that burns
Our aching feet
Wishing we could see beyond
Of heartache and disbelief
But keep walking
Maybe in that next step
More will be known?
What is it that we want?
More clear skies
More to give
We walk in the unknown
In the deserts of doubt
We walk alone
Even as we are
They don’t know
The internal desert
That burns our being
Etches our skin
And blinds our vision
We keep walking
Because this walk
We look around
We see love
And yet true enjoyment
Cannot be ours
It is there
It is felt
Yet strangely removed
Not ours to enjoy
As desert sand
Burns our souls
This walk connects
The life we used to know
The life we took for granted
With the life that will be
On the other side
Of this unexpected
We sink in
We keep walking
And our footsteps
Of smoky trails
And sand-blown vistas
Sand carving our skin
Burning our will
Testing our resolve
We keep walking
Knowing that one day
The spiraled labyrinth
And reveal a path
Walter joking on Skype
April 12, 2014
It is amazing how good Walter feels right now. He was just joking back and forth on Skype with our oldest son who lives in Denmark. I haven’t heard him laugh like that for a long time; that real Walter belly laugh that warms up the room and fills everyone around him with a sense of joy. And since he got to Nebraska and we found out that they were able to list him here for the surgery, Walter has been much happier. He is obviously still very ill, but he is happy!
The body weakens when our soul is giving up and we feel despondent. And that was what was happening to Walter at UCLA. The thought that he had to be sicker, yet could not be too sick, and that so many die waiting for a liver there, was discouraging. And Walter was losing faith. Not in God or in Love, but faith that he would make it. We both felt his soul and his body give in.
He stopped wanting to eat, to talk, to engage. And I have seen a reversal of his well-being since I have moved him here, where there is hope, where the doctors take time to really investigate his case, and personalize the treatment. Not just by dosing medication and popping in for twenty seconds, but by looking at the whole person, taking the time to ask about specifics in his case, and seeming to really care. The staff here truly takes time to add humor and humanity into the equation! This is a big part of the reversal of Walter’s well-being. But there is something else:
Prayer and good energy create a blanket of support. I have no doubt, because I have felt the love and the prayers coming towards Walter from you. Yet, we have to take action! Prayers and love act as oil in the machine that once we push in a direction fuel our movement. When Walter and I were in limbo at UCLA, the love and prayers were a comfort. But once we started taking proactive measures, the prayers and the love acted as wind in our sails!
The saying that “God helps those who help themselves” came to mind. It seems to me that we do not “receive” miracles. We set our intention towards them. We do everything humanly possible to get them, and this action might be foundational to receive the miracles in our lives. The Universe picks up on our intentions. It is like a gravitational pull that we activate with our actions.
I could do much less, if Walter and I hadn’t been blessed with the energy and the love from you all. If we hadn’t had the power of collective intent and well-wishes amplifying our own gravitational intent! I am convinced that the power of prayer works! And that once we have a vision and a direction, we can use it for more than just comfort. Now, of course there are plenty of times in our lives, where comfort is exactly what we need. And then there are times where we are called to action. There is a time and a place for both.
A few years ago, I stood in the Cathedral in Chartres, France. I looked at stained glass and human design that came together to create a space that felt Divinely inspired. I sat down with a pad of paper and a poem popped out that felt as if it were written through me. One of the lines of the poem was: “Walk boldly and with determination”.
This phrase has been my guiding principle since then. And when I was picking up the frail body of my love the other morning from UCLA, feeling unsure that he would be able to make the journey to Nebraska, this line from the Chartres poem played like a loop in my head: Walk boldly and with determination!
I am now watching Walter sleep in his hospital bed. He had a huge breakfast earlier, and we will get him out in the air after lunch.
The wait continues. The wait is a fact of our life. The uncertainty is as well. But we walk boldly and with determination. And we feel your love and support walking with us. Believe me, it sweetens and lightens the journey every step we take!
Walter listed for a lover transplant in Nebraska
April 11, 2014
Walter just completed the evaluation at the University of Nebraska Medical Center. And this just in: He is now officially approved and listed for a liver transplant in Nebraska!
Now he is on a much smaller waiting list for a new liver! Walter and I will stay here as he awaits his surgery.
I wanted to let you all know the good news ASAP.
We are so very relieved and happy. Thank you for your prayers, love and support. No guarantees on when the surgery will take place - but Walter is near--or at the top-- of the list as opposed to how things were at UCLA....
Walter travels to Omaha
It has been an eventful week so far!
As you know, I have been working to improve Walter’s odds at being considered for a liver transplant. Certain regions in the USA are more challenging in this regard, and California is one such difficult region.
Well, Monday after continuing to apply pressure on various fronts, I finally got the financial clearance to get Walter evaluated at the University of Nebraska Medical Center in Omaha. A few hours later, I had the clearance from Walter’s surgeon at UCLA for him to travel commercially if I got first class tickets for the front of the plane. And miraculously our amazing travel agent at Travel Leaders managed to secure two such tickets before the close of business Monday!
Tuesday went with more phone calls than you can believe, and getting our home front with our two sons, who still live at home, ready for a possibly months long absence of both dad AND mom. If Walter is accepted after the evaluation in Nebraska, both Walter and I have to stay there until at least 4 – 6 weeks post-surgery – and possibly even longer. I found a person to live with our boys, and I cannot tell you how grateful I am for that. I will need to be long-distance mom, check homework assignments, and other parental functions from afar! But I need someone on the ground to help our kids stay centered, fed, transported, safe, etc. And this came together too!
Yesterday morning I got up at 3:30AM and left to pick up a friend to drive our car back – and we walked into Walter’s hospital room at UCLA at 5:30AM!!! Walter is typically on rock star schedule and not a happy camper early in the morning. But not this time! He was all smiles as we walked in, turned on all the light and announced that he was off to Nebraska!
Walter had been in a hospital bed for 4 weeks, and even sitting up for short periods of time is challenging for him. So I was concerned that the trip with a layover and hours in an airplane seat would prove too much for him. But he did great! I took a picture of him in the airplane seat. And when I looked at it later I saw something in his eyes that I haven’t seen for a long time: Hope!
I was amazed at the helpfulness and patience of everyone from TSA agents to airline staff to regular passengers and passersby as I shuffled 4 check’in’s, a carryon full of medicine and other medical supplies, a walker, a cushion, a blanket, a walker, support boots for Walter’s leg, Walter and a wheel chair on the two flights. Unfortunately no direct flights existed between L.A. and Omaha… but thanks to the kindness and sweetness of people, this all went really well. Walter was a trooper throughout!
Waiting for us in Omaha were dear friends who have arranged transportation and lodging for me, and a ready hospital bed for in-patient evaluation for Walter. Now Walter is going through thorough testing to make sure he is strong enough for the surgery here. If all checks out and we get clearance from the many doctors, psychologists, social workers, specialists, etc… and we get financial clearance – Walter will be listed for his transplant surgery here in Omaha. Nothing is for sure here. But at least we have a shot at it!
He stands a much better chance of getting a new liver here as there is much less competition for the available donated organs here than in California. I will keep you posted as things progress!
Thanks to all of you for helping me pursue these kinds of options – it makes it possible to seek the best treatment for Walter! And also apply some “out of the box” thinking - like out of state surgery. We feel your thoughts, energy and prayers and feel that this wave of goodwill is carrying us ever forward.
April 06, 2014
Walter Trout Battles Liver Disease - Update 11
Walter is doing better! I think it has to do with the two units of blood he got through the blood transfusion the other day. He is visibly stronger and more able to putter about his hospital room for longer periods of time. His MELD score is even slightly down – now prolonging the wait for a new liver in L.A. as well. It is that constant dual pivot: The doctors want Walter strong enough to eventually withstand the surgery, and his lab numbers need to qualify him – meaning his labs need to show him sicker!
Tomorrow we will hopefully find out if he qualifies to fly to Nebraska Medical Center and get evaluated there. If they accept him as a patient, his labs already qualify him for the surgery there. And it would be a matter of simply waiting for a liver to become available, and hoping nobody with the same blood type is more ill than him at that time. It could still mean a long wait – but possibly a shorter one that Walter faces here in L.A. I think Walter also comes home tomorrow – here to the kids and me. Home nursing is at the ready – and I so hope we can have him here for a bit. But if Nebraska will take him in for an evaluation – we are out of here. We’ll do whatever it takes!
Walter is not afraid of death. He just wants to live longer! He wants to have more of the kinds of experiences that are available here on earth. He is alert to the beauty of a butterfly fluttering above, the connection in an honest and sincere smile, and the sense of feeling of family around him. These are the things that stand out to him right now. And he wants to play. He wants to sing. He wants to communicate that which is non-verbal in music. He wants to connect with people in music and in life. He wants to sing the blues with all of his heart. He simply wants MORE!
I see this resolve in him right now. He is through feeling down on himself for now. He had quite a stint, where he felt so very regretful about the many years of substance abuse and alcoholism, which indirectly contributed to his disease. Although he has been clean and sober for 27 - TWENTY-SEVEN -years, the ghost of addiction still resides in his liver disease. And I think in a very real way getting the new liver implanted will be a re-birth for Walter. He will be clean from the disease that destroyed his liver (the medication took care of that), the ghost will have perished, and he will have a new chance at life.
I can’t wait for this re-birth. And yet, I remind myself to walk in patience. We continue to act proactively and do everything we can – and at the same time let go of what we cannot control. And together Walter and I feel surrounded with your love and prayers. It is such a blessing!
Much love always,
April 03, 2014
Walter Trout Battles Liver Disease - Update 10
Living in uncertainty is a hard practice. And the uncertainty continues. Walter’s MELD score remains constant – which means he is not moving up the list, yet at the same time other numbers go down, which means he is getting weaker overall, yet still not in the way that allow him to move up the list of qualifying for a liver. Yesterday we found out that our favored alternate out of state medical facility for having his transplant surgery did not work out! Our insurance company would not play ball, and then instead of us dealing with rehabilitation, home care, co-pays and deductibles, we would have to cover the full cost of the operation: About two to three million dollars. So that options seems off the table for now!
We are now going ahead with seeking insurance approval at the second favored facility on our list. I work at this stuff many hours each day. It is all about finding a surgery center that is qualified, willing to take Walter on, and that has less competition for the livers. In LA – and California in general – the competition to get a liver is heartbreaking. At the same time, here at UCLA they are absolute specialists in people who are very ill – and still performing successful transplants under those conditions. This obviously is helpful to Walter’s case. So there are no easy answers here.
I stayed with Walter for a long time yesterday. I cuddled up next to him as he got a blood transfusion. We marveled at the gift of life that someone had donated to him. The life force of red magic dripped into his veins and we talked about the importance of appreciating the moment. We often feel tempted to allow the mind games of “what if” or “what if not” to enter into our lives. And when we get into that kind of spin, we cannot keep our strength. Walter needs all the strength he can muster to continue getting out of bed once in a while and walking around, exercising, doing breathing exercises, and keep himself going. I need all my strength to explore alternative options, weigh and measure them, and stay on top of all possibilities, and contingencies, while not getting too attached to any of them as disappointment often follows. I need to stay awake for the long drives to and from UCLA, and I also have to keep it together for our kids. And I am working on the final touches on the album art work and pictures for the book that are due to be released. Walter worked so hard on all of this until just over a month ago – and I want to make sure it is perfect in time for the releases in June. So there is no time for “mind games”. We both need to keep our focus on the tasks at hand.
We walk each step in uncertainty. And much of our walk these days feel like it is in circles. They are talking about discharging Walter tomorrow. We’ll see! And we’ll see if the other out of state medical facility approves him to come there for an assessment. We’ll see if it is worth the risk to travel with Walter there to get assessed and risk getting turned down and have to come right back. In the meantime, we continue appreciating each moment for what it is – and not for what it isn’t!
April 01, 2014
Walter Trout Battles Liver Disease - Update
$175,500 reached in 2 weeks!
Walter is still at UCLA. He is in a fairly stable condition. And that is good. At the same time – some days his lab numbers show a little improvement; other days they take a dip. And that is typical at this stage. We hear daily talks of discharge to home care – and then the doctors determine that he still really needs to be monitored closely. So he stays put.
Yesterday Walter was walking around his room with the Physical Therapist spotting him. So his leg is getting better. It is awesome that he can now move around a bit. And the condition that originally led to the liver failure has cleared. The medication he has been on for the past two months worked – yet it arrived too late to save the liver. However, for transplantation this is great news as the condition is unlikely to return. And thus, when we get that new liver put in him, he won’t have this condition to battle anymore.
To say that we are impatient for developments regarding liver availability would be an understatement. I am sure you feel the same way reading this. And at the same time, there are many with the same blood type as Walter who are sicker – and therefore more likely to receive a liver when it becomes available. That is the reality in the greater Los Angeles area. The waiting continues.
I am becoming the queen of contingency plans. I have layers of them going at the same time. I am talking to another Medical Center out of state, where the competition for livers is less fierce. It is a matter of receiving doctor’s clearance at UCLA for Walter to travel there to be evaluated – and for the receiving facility to review his case. One center is our preference – and I am also exploring possibilities at a third facility. It takes time.
Check this out: In Wales, UK, they have a system where you are automatically an organ donor at the time of your demise. You can opt out, but if you don’t, you are automatically registered. Imagine if we had a system like that over here! We have such a shortage of organs – and so many waiting. We have to indicate to the DMV that we give consent to have our organs donated when we don’t need them anymore. I remember standing there and thinking: “Well, do I want to be cremated whole or missing some parts?” I remember feeling that it was uncomfortable, but I agreed to the organ donation. And I have a red dot on my driver’s license to identify it. Check out yours. If you don’t you can find more information about it here:http://www.dmv.org/organ-donor.php Becoming an organ donor means that you can give life to up to eight other people with your body parts when you do not need them anymore. It just makes sense!
The other day I snuck into the hospital bed with Walter and we both had a great nap! It felt just like home. In fact, when he and I are together – no matter where – we are both home. As we operate from the cocoon of our love, we also feel held and supported by the arms of the community that you are part of. And we feel your thoughts and prayers. Every day!
March 28, 2014
Walter Trout Battles Liver Disease - Update
When I met Walter, he pursued me with a vengeance. And it was geographically difficult for us to plot a future together (I lived in Denmark – he on the other side of the globe in California). Still, Walter proposed to me 45 minutes after we first spoke. Ten days later, I accepted! He welcomed me to "the rollercoaster ride"!
And what a ride! Walter has a way of pulling me deeply into his whirlwind of emotions, and somehow making it possible for me to find my equilibrium in the eye of the storm. Our time together has never been on an even keel! Life with Walter is like living in one of his guitar solos: Intense, exhilarating, filled with beauty, agitation and passion.
And lately, the rollercoaster has taken some pretty intense dips and crazy hairpin turns. This wait for a liver definitely takes the cake so far! Today, when I walked into Walter’s hospital room, he was very tired and weak. The nursing staff had taken his blood every couple of hours throughout the night – and prodded him in other ways. He was beyond drained.
A representative for the home nursing company came and visited with us – and my mind is at ease about that now. If Walter does come home on Monday – as planned – we are ready, and we have everything necessary to make it work for the 24 hour round the clock care for him. That will take a lot of guess work out of the equation for me. And if there is something I don’t want to guess about right now; it is Walter’s health.
I managed to persuade him to squeeze a little bit of food down, and then Physical Therapy came to help him take a few steps in his special boot. It worked pretty well, and he came out in the sun in a wheel chair with me for a little while. The wind, the sun, and the fresh air surrounded us, and we both drank it in. I could feel how a gentle breeze caressing his skin and the warmth of the sun were almost revelatory to him after weeks holed up inside.
When Walter and I drove up to our rehearsal dinner in advance of our wedding 22 and a half years ago, the sky turned a bright, deep, dark orange and a severe thunderstorm passed overhead with a full jagged sky- to-ground electric light display. I remember looking at Walter and saying: well, I think God is giving us a blessing on the rollercoaster ride.
As I write this, our house just shook from a pretty good sized earthquake. Online I see it was a 5.1 rolling shaker. Walter’s guitar light swung from the rafters, and drumsticks fell off the piano bench. But we are OK, and our house is still standing!
March 27, 2014
Walter Trout Battles Liver Disease - Update
"On my drives up the freeway to Walter in the dark morning hours, I listen to his new album (due to be released in early June). I blast it on the car speakers. Walter recorded this album throughout 2013, and his health was gradually declining throughout the process. I listen to how he converted his intermingled feelings of hope and despair; his desperation mixed with a rock-solid will to persevere. It comforts me as I drive up there dealing with the same gamut of emotions. And it occurs to me: This is what the blues is all about: Standing in the midst of emotions, claiming them fully – and just being alive in the feeling. There is no pretentiousness, no cleverness. It is all about our common humanity. And Walter is such a clear channel!
Walter is a fighter. Just the fact that he kept touring and recording through this past year amazes me. And it is all there to hear. I listen to Walter’s voice and his playing and I feel surrounded by his love, his presence, and his kick in the pants willingness to stick around! He is a life-warrior. I know in my heart that he will come through this.
And then I walk into his room, and I see him under the blankets – and I know that his big spirit is completely intact – even as his physical presence right now is much smaller. Inside is my fighter, my knight without armor: my love.
Walter got a new “boot” today from the Ortho – and Physical Therapy worked with him on using it. He was up for a while and sat in a chair – walking is still out of the question, but at least he was briefly on his legs and that is good. Then he got to visit with his collaborator and co-producer in the studio, Eric Corne. After my visit, then Ortho and PT, then Eric – Walter was ready for a well-deserved rest.
Walter’s hepatologist told him today that his “numbers” keep going up (meaning the liver and kidney function continues to diminish) – and that is of course what they want to see in order for him to qualify for the surgery. Now they are keeping him in the hospital until Monday to monitor. I have home nursing on the ready – when he does come home. I want to have excellent care for him no matter where he is. And thanks to all of you – these things are all possible. I guarantee you, Walter will get the best possible care. In a sense Walter and his music belongs to all of us! And I feel this responsibility every day.
March 25, 2014
Walter Trout Battles Liver Disease - Update
Lately I have found a routine where I get up at 4AM to avoid the crazy 405 LA freeway at its most teeth-grinding rush-hour gruesomeness. This routine works well to make the 45 mile long commute from Huntington Beach to UCLA. I then nap in the back of the car and take a walk until it is an appropriate time to wake up Mr. Trout! Walter is happy to see me for breakfast, and today I snuck in a freshly baked flaky croissant for him. His appetite has been non-existent lately, so this little cheat helped a bit.
We have news about his leg: After an ultrasound, an X-ray, a MRI, and another specific kind of diagnostic ultrasound, the doctors have determined that there is a torn tendon and a hematoma in his left calf. This is what has caused him agony when he has tried walking for the past three weeks – of course combined with the swelling in both legs and his abdomen from the liver disease. A course of treatment is now in the works. Furthermore, after I summoned the infectious disease specialist yesterday, he determined that Walter needs additional antibiotics intravenously to combat a topical infection on his leg.
None of this will have any implications on him qualifying for the operation, when his number comes up. And none of it should have any long-term implications. So this is good. It also means that they keep him in the hospital for the next week or so.
We are both getting good at going with the flow. We thought Walter was coming home – but now he is staying at UCLA for a while. And all the while his liver and kidney numbers are steadily worsening. And that is what is expected of course. Hopefully soon, the numbers will be so bad that Walter can be considered for a new liver. This is one of those “gotta get worse before it can get better” scenarios. It takes a tremendous amount of mental, emotional and spiritual strength to get through.
Walter is handling it with a lot of grace. I keep reminding him of all the fun we will have when he is better. How the kids and I once again will go on the road with him. This is when Walter feels the most alive: when his family, his band family, and his fans and friends are all around him at the same time, and he can go out and merge it all together with the heartbeat of the Universe and express it through music.
I wake up in the morning and I feel as if I have a beam of light going straight from my heart to Walter. I send him light and love many times during the day. I hug him in person and from afar. I tell him that whenever he gets tired of doing his leg exercises or his breathing exercises that he needs to do it for me. I cannot imagine life without him. It is NOT an option! I look in his eyes and I see his soul speak without words. We hold each other and cry together. No words. No words can adequately describe what we feel.
Once in a while, we sit together and read the comments that you all post on this site. And they surround us with moments of peace and a sense of love. We feel you out there – and I cannot tell you enough what each one of you mean to us.
March, 24, 2014
Walter Trout Battles Liver Disease - Update
From Marie, Walter's wife:
Firstly, I would like to say a massive thank you to everyone for helping us reach the $125,000 goal. Every donation, social media share, word of support, prayer said etc.. It has helped us to hit the target within 4 days & show Walter that he is not alone in his fight, we are here backing him. This is all down to YOU wonderful people!
You may be asking "why is the campaign still running when they have raised the money needed"? This is a very good question, here is the answer:
In short, we simply don't know how much Walter's medical expenses will be. When I talked with Marie Trout about setting up the campaign, the difficult decision was,"what is the target"? This was difficult because the expenses are a huge unknown. After much discussion we decided to set what we seen to be an achievable goal that would encourage rather than dishearten people. As it stands, Walter has already incurred enormous medical bills. Now that he is expected to leave hospital and return home to await his transplant, he will need 24/7 home care (of which none is covered by medical insurance). This is one of many unexpected expenses that are coming in regularly. The money raised so far is a huge financial support to Walter, but every extra penny that we can raise will be a blessing to the Trout family. So let's keep this campaign going and continue to spread the word and show our support.
March 23, 2014
Walter Trout Battles Liver Disease - Update
$125,000 reached in 5 days!
"Dear friends and Blues Community,
You BLOW OUR MINDS! The support you are showing Walter and the love coming at him from all sides is humbling. The goodness and the generosity you show to him boost his resolve to keep fighting. Knowing that you are there sending your love and energy truly makes a difference. Walter feels it. Believe it!
I was visiting with Walter earlier today – and he was just out of bed. He and I had breakfast sitting together for the first time in a long time….. That was nice. But, he is in screaming agony when he tries to support himself on his legs – and the nurses and Physical Therapy are now working with me on getting him up more in preparation for him to come home. But there is something really wrong with one of his legs beyond just the muscle loss – and so today he is getting a MRI to see if it can pick up something that the X-rays and Ultrasound did not. If he is to come home and wait for the liver to become available, he ideally should be able to support himself a bit.
It is remarkable to observe how our bodies work in intricate ways. If one organ – like the liver – weakens, all the other systems in the body are affected.
Because I can breathe, sit, stand, lift and even run right now – I am so thankful! These are things I used to take for granted. But Walter is teaching me to live in constant appreciation of what I have every day! And in turn I remind him that his current situation is temporary. To keep focusing on doing everything he can do now to stay strong – and not get frustrated at all the things he cannot do. That will come back later.
So we continue the trek into the unknown one step at a time. Thank you again for standing with us – for reading this update – and for keeping Walter in your thoughts and prayers. To those who have donated: I want to look you in the eye and show you what this means to us. As you read this – please know that. Thank you for extending your love into the world.
March 22, 2014
Walter Trout Battles Liver Disease - Update
From Marie, Walter's wife:
"First I want to thank all of you. Walter and I are speechless at how you have rallied around this cause. You have absolutely filled our hearts to the brim with your care and concern. To all of you who have donated: Thank you - thank you - thank you! As we are facing a long period of uncertainty, your contributions are helping Walter relax. The outpouring of love, concern, and prayers from you all is truly amazing. This is healing energy and he feels it!I am spending a lot of time in the hospital with Walter. He is very weak; he is tired all the time, and he has all the symptoms of end-stage liver disease.The past two weeks where Walter has been hospitalized have helped him regain his kidney function, and almost cleared the infection that was throughout his body. This is the good news. The bad news is that since he is now doing better, he is no longer a top priority for immediate transplant. He still needs a liver transplant more than ever - and they still figure that statistically this will be within the next "90 days" - but because his kidney function and other vital functions have normalized somewhat, he is further down the list.He is now "medically stable" and the doctors have determined that the safest place for Walter to be now, is at home with care 24/7.So Walter will be coming home to me some time next week to continue the wait for the liver there. It is a paradoxical situation: On one level, Walter needs this transplant desperately. On another level, his other organs and body systems are still functioning. These will need to get weak enough that they also fail or are on the brink of failing before he can receive top priority for the transplant.The livers are allocated depending on need. And whoever needs one most gets it. This is a fair communal system - yet emotionally and individually it is hard. Because basically the message is: "Yes, you need a new liver, but until your other body organs and systems also shut down, you cannot receive priority."The trick is then to keep his overall cardiovascular and pulmonary condition from deteriorating while he waits. He needs to do so to withstand the operation. He needs to be in good physical condition to withstand the 8-10 hour long operation. This is a tall order, since walking is exceedingly painful for Walter right now.So we will get home care and Physical Therapy for Walter to start training for this upcoming marathon of an operation. At home, he will be less at risk for infection and some of the other risks that are in a hospital setting. And he will need someone with him all the time.I will go through some training to know what to look out for. There are a whole host of symptoms that warrant getting Walter immediately to the ER or back to UCLA. We know his day is coming for the operation, but when that is - remains uncertain.Many of you have asked if there isn't something we can do to speed up the process... and really there isn't. There are no experimental programs at UCLA currently, and a living donor option is not possible. Thank you to you who have offered to be tested as a living donor - but it only works when the patient is a very small person or a child. Walter is too big - even at 120 pounds!And although it is excruciatingly hard emotionally to watch Walter continue his trek downhill as his liver is failing, it is important for me to keep in mind that this is sacred life we are dealing with here: The gift of life in the form of a donated liver will be afforded to Walter from somebody who is going to die - typically a violent and sudden death.This process is tender, it is difficult, and it will be life-saving - even as death comes to the donor! And saving lives - saving the most amounts of lives with these sacred donations of organs - is part of what these teams of doctors and surgeons consider each day. It doesn't matter who you are or what you do when it comes to these precious organ donations - all who are on the liver transplantation list are equal: The sickest gets priority.I feel the whole gamut of human emotions. I love Walter so much. He gives my world colors. He is the most alive and vibrant person I know. And I am determined to keep fighting this battle and do whatever is necessary to get Walter back to living life where he can share his gift with us all. And I have no doubts that this will happen, especially now with your help, love and prayers. This community we are creating here will sustain his faith, help him have peace of mind and enforce his willingness to persevere. It is just a long, long and arduous trek with no shortcuts and no easy solutions. It is marathon upon marathon upon marathon. Emotionally, physically, and spiritually.Thank you again for your support. We so appreciate each one of you. I hope that you will continue to pray for him. Hang in there with us! It offers us much relief to know we stand shoulder to shoulder with you all. Let's keep the positive energy going.We are long-distance runners - and we all run this race with Walter!"
March 20, 2014
Walter Trout Battles Liver Disease
Walter is currently hospitalized & in urgent need of a liver transplant!
He has been battling severe liver disease bravely for the past many months. He has continued touring and recording until a few weeks ago - he loves playing for people, and it has been the best medicine for him.
We were given hope that medicinal treatment could reverse his condition but we now know that this hasn't worked. His liver has failed, and doctors say his survival depends on receiving a transplant.
He is at UCLA in and out of Intensive Care, which is a prime facility for liver transplants. Walter has health insurance but this will not cover the full cost of his treatment. The medical expenses, co-pay, medication, after-care, etc. are going to be immense.
Walter will need to cancel much of the tour planned for 2014 leaving him and his family with little income.
By helping support this effort, you can help give Walter peace of mind and focus solely on his health and recovery before, during and after the transplant.
The timeline is uncertain at this point. Waiting for a suitable liver donor in the hospital can be a lengthy and costly process of many weeks or even months.
There will be considerable cost for rehabilitation, re-training and physical therapy post-surgery
Quote From Walter's Wife Marie:
"Thank you for coming here and sending your love towards Walter. It means the world to him and to me to feel surrounded with your love and prayers at this difficult time. Walter has lost 100 pounds and most of his muscle tissue in the past year, and suffered much pain. It has been heart wrenching to watch him go through this. He has tried to put on a brave face for us all - he has kept playing, composing, singing, touring, and recording because music and communicating through music has always been his life line.. But he has reached the point, where he is too sick to stand up or even hold a guitar. Thank you again on Walter's behalf for your love and support."
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