Transplant Eligibility Process

My deepest condolences on the loss of your son. Prayers for you. I’m not sure about the answer to your question but I know my son is in a 3 month deferment to get on the list while getting addiction treatment and other testing. I’m worried because his meld score is way too high to wait.

I don't know what hospital you're working with but I would talk to Johns Hopkins. They have no waiting period rule. I say this because you don't want to end up in my shoes. I'm living a nightmare everyday.

Dear @carolcj I send my deep condolences to you. It is important that you’ve share this and I agree that the blanket rules relating to addiction are problematic to say the least. Addiction is a disease and sometimes liver disease is the consequence of addiction. While my liver disease was not addiction related for several months my nearby liver team was skeptical and this has to do with circumstances I won’t bore you with. I was so afraid I’d die before they decided to believe me but I still feel that their skepticism and unwillingness to evaluate me right away was very dangerous for me. I did have a lifesaving transplant but my MELD was scary high at 32. I have made a commitment to myself that I would advocate for more fairness and realness about addiction and transplants. I will do so with your son in my heart too. This is important and I send to you all the light and peace you deserve. Kate

@carolcj Welcome to Mayo Clinic Connect. I am heartbroken to hear of your son's passing.

I am a kidney disease patient, and would love to be able to qualify for a transplant. However, I have a blood cancer, which is something you cannot "cut out" or "make go away". Therefore, I am not eligible for a transplant at any point. Other cancer patients I know have had to show to be disease free for 5 years before being able to be transplanted for a solid organ.

Going through the transplant evaluation process is not an automatic approval. Beyond the physical exams, mental and psychological factors are considered. Lifestyle and medical compliance also are taken into account. The transplant center wants to ensure as successful an outcome as possible for everyone, from donor to recipient. As you noted, addictions appear to be considered part and parcel of disease, and cancer, and indeed a person can be turned away for consideration. Sometimes, a health concern is discovered that would otherwise not be found, and can knock someone out of the transplant process.

I know this will not bring your son back, but I do want to relate this story. I know of a person who needed a transplant. Being an active addict, this person was on a transplant list, but was deactivated because they were not able to commit to sobriety and show compliance required Eventually they did get clean and sober, and were successfully transplanted.
Ginger

carolcj, I am so very sorry for your loss. I cannot imagine what u r going thru. I know w/alcohol my TP team says u have to be clean for 6months and they check your blood but not sure if u get in a serious situation as your son what they do.
So many people r needing TP so everyone needs to be considered.
Take care❤️

@carolcj I cannot imagine how devastated, sad and angry you must feel. As a parent, watching your child struggle and suffer and not be able to get the right help or control the outcome is the most hopeless feeling I've ever had. I promise you are not alone - mental health and substance abuse impacts so many of us and while we've made a lot of progress as a society, we are far away from a solution. I admire your strength - even in the loss of your son, you're using it to advocate for awareness and change in the hopes your experience might help another in the same situation. I think that's incredible and truly honors your son's life and memory.

Our family is in a different but similar situation. Similar to one of the shares above, my son needs a kidney transplant, and he was also deferred for 3 months due to previous substance use. He had to complete an IOP and several monthly drug screens before Mayo would bring him to committee. We had hoped for a pre-emptive transplant but during that time he deteriorated quickly and is now on dialysis. It's been a harrowing few months. He has just recently been cleared for listing (not active yet - now waiting for additional blood tests and insurance approval).

Intellectually, I think the idea behind all of this is responsible, in the sense that it is important to give patients the tools and support they need to achieve the best possible long term outcome. At the same time, in an extremely time-sensitive, life and death situation, it is illogical and dangerous to put the entire process on hold and not do ANYTHING until certain conditions are met. Like you, I've found this part of the process (and the general order of operations) to be the most frustrating and excruciating. There are so many things that could be done, prepared, arranged in parallel - there are things that can be done DURING a waiting period. The goal should always be moving the patient forward, every minute, every second. Nothing should ever be on hold or "deferred" - every minute counts and every minute should be used progressing the case forward in some way so that when that one condition is satisfied, everything is ready to go. That is my POV.

Hugs to you and your family and I deeply appreciate you creating awareness and advocating for those who need it most.