Robin & Blayne Muller

First post: Apr 16, 2018
My dad's name is Robin Muller. Several years ago he was diagnosed with liver failure and we slowly watched his health deteriorate over time. In August of 2017 he became very sick and he spent the next several weeks in and out of the hospital, including, two ICU stays. The main take away for what was happening was that his liver failure was now so advanced that he was in need of a transplant to save his life. We began the arduous journey of beginning the liver transplant process with his GI doctor and a referral to Henry Ford Health Systems. We decided on Henry Ford for multiple reasons but the main one is that Henry Ford Hospital in Detroit is the pre-eminent liver transplant hospital in Michigan. They perform more liver transplant surgeries in Michigan than even the U of M. Their success rate and aggressive patient advocacy are second to none in our area. We are blessed to live in Grand Rapids and Henry Ford has a satellite clinic located here in partnership with Spectrum Health.

We had our first appointment with Henry Ford in September. At this appointment we were told that he would be a good candidate for being placed on the transplant list, however, his MELD (Model for End-Stage Liver Disease) score was only 8. According to the Mayo Clinic, "...MELD is a reliable measure of mortality risk in patients with end-stage liver disease. It is used as a disease severity index to help prioritize allocation of organs for transplant."  My dad's initial MELD score was 8 (the range is 6 (less ill) to 40 (gravely ill)) and though his score was low his clinical picture was deteriorating quickly. In January of 2016 my dad was taken to the ER because he was vomiting up blood. People in liver failure often develop something called, Varicies. Varices are dilated blood vessels in the esophagus or stomach caused by damage to the liver and are prone to rupturing and causing serious and significant bleeding. At this ICU stay he was stabilized and the doctors were able to intervene and perform a procedure called "banding." After this hospital stay my dad had to have an upper GI scope done every 3 months to have banding performed to stop the varices from rupturing. Around the beginning of summer in 2017 my dad developed difficulty breathing due to fluid accumulating in his belly. This required another trip to the ER that resulted in him being admitted to the hospital for a procedure called, paracentesis, where doctors use a large needle to poke through the skin and muscle of the belly, into the inner abdominal cavity, to drain the fluid out. At first he needed this procedure once in a while but by the time we had our first transplant appointment he was needing this done twice per week. Liver failure causes many complications for patients medically and on top of all of these issues he had day to day problems with excess fluid in his legs that were causing blisters and wounds, he had increasing problems with confusion (called encephalopathy) from his liver not being able to filter certain toxins, and he has some seriously bad knees that do not allow him to get around very well. My parents live in Newaygo, MI and my mom works an off shift at Ferris State University as a custodian. Often, my dad was alone in their home and he was trying to manage all of his appointments, medications, diet and personal care needs, by himself. Needless to say, this wasn't working very well for someone who had memory problems. After my dad's stay in the ICU in August of 2017 he came to live with me and my family in Rockford, so that he was close to doctors, hospitals, and so that I could assist him with his health care needs, turns out, I'm a Registered Nurse and he really needed some nursing care!

When my dad when to that first appointment at the Henry Ford clinic and we were told that he would be a good candidate for getting placed on the transplant list, Dr. Moonka, the hepatologist, discussed with us that my dad would be an excellent candidate for a living doner liver transplant. In the case of a living doner transplant the donated organ comes from a live person and the wait time is exponentially shorter than lingering on the transplant list waiting for an organ to come from someone who died. Together as a family we began discussing who would consider donating? Myself and all three of my sisters stepped forward, without question, to be considered. One day, I was talking about this process with my cousin, Blayne, and he too stepped forward and said he would be happy to be a candidate for donation. My dad was so lucky! With five potential liver doners he surely had a chance to find a match! Once he was officially placed on the transplant list we had to come together as a family to decide who would be the first potential candidate. There are many caveats for being considered a donation candidate and we needed to pick the person who would meet all of the requirements the first time. After we had a family meeting it was a unanimous decision that Blayne would be the optimal candidate and without a single moment of hesitation he offered to start the process. The great thing about this is that Blayne is my dad's grand-nephew and he is EXTRAORDINARLY healthy. Blayne owns his own tree service business along with being a co-owner of a Crossfit gym. Blayne and his girlfriend, Andye, are super health conscious and very fit and active. I'd love to tell you that the process for donating is simple but it is not. It has been a six month journey for Blayne and my dad. Blayne has had to have multiple tests and appointments in Detroit (my dad too...but not anywhere near the amount Blayne has had). There have been so many ups and downs during this process where it was never certain that Blayne would qualify as a doner. We were told when we began this process that only 30% of people who want to donate end up being able to for various reasons. After every test the team at Henry Ford would have to present Blayne to the Transplant Committee and there for a while it seemed that each time they met they wanted further testing done. It was a long and exhausting process but we found out at the end of March that Blayne was officially granted the green light to be my dad's liver doner!!

We have hesitantly celebrated this milestone in our family as not only was the transplant given the green light but we were also given a surgery date of April 30th, 2018. I say we've hesitantly celebrated because both my dad and Blayne still have to clear the pre-op appointment and lab work that will be coming up. So, tomorrow we, again, journey down to Henry Ford in Detroit for pre-op labs, education, and a tour of the floor where they will convalesce after surgery. On Wednesday, my dad, will have his last (we hope) upper GI scope with banding and then on Friday he will meet with the transplant surgeon here in Grand Rapids. If everything goes without a hitch then our crazy big family will all convene in Detroit at Henry Ford for this life saving liver transplant.

The post op recovery will be lengthy for both my dad and Blayne. Like I mentioned above, Blayne and Andye, are self-employed people with Blayne's tree service (Muller Brothers Tree Service, BTW) being their primary source of income. Blayne will have a longer recovery as his level of physical activity will be restricted for 12 weeks post op and this will cut into a large portion of his income. Despite this concern, Blayne remains committed to helping save my dad's life and for that he can never be thanked enough. I have started a GoFund Me page for Blayne and my Dad to help try to off-set some of the large out of pocket expenses for both of them. If you read this and would like to donate please visit: https://www.gofundme.com/rb7ge-liver-transplant-support.

We can't thank everyone who has expressed their love and concern for all of us and for those who continue to ask for updates and keep our whole family in their thoughts and prayers. Please know how very much it means to each of us but especially my dad and Blayne. We love you all and I will do my best to keep this page updated so that you can follow along on our continued journey through this liver transplant process.




Lots of Love,




Desiree

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