Transplant Wait Time

Posted by lonnecka @lonnecka, 6 days ago

My husband is going to Mayo for a liver transplant. Whenever this whole process started, we tried to do our research to find out average wait times, etc but could not find anything. Hopefully this helps someone out by giving them a little info.

My husband has been evaluated to be put on the liver transplant list for 11 months. He started with a 19 MELD score. Luckily, it has gone down to 14 during this time so we’re not in dire need at the moment. He’s had many many many appointments & blood draws during this time. He got many CT scans, MRIs, blood draws, general Dr appointments, nurse appointments, etc.

He also had many ED appointments during this time, ranging from a heart catheter procedure, to electrolyte imbalances, as well as many other issues. The team wanted to make sure that any and all issues be taken care of during this time.

He was just approved for a transplant 3 days ago. They told him that he can be on the list anywhere from one day to one year, depending on availability & matching criteria. Additionally, he has to be ready to walk out the door in minutes. We have a go bag ready & he has to take his phone everywhere he goes.

Hope this helps people that are just starting this process. I know this whole process is different for everyone but it gives an idea of what to expect. It can be discouraging at times but looking back, it’s all water under the bridge. The end result cancels out all of the discouragement. Good luck in your journey.

Interested in more discussions like this? Go to the Transplants Support Group.

craigcraig | @craigcraig | 6 days ago

Full liver transplant Mayo AZ 1.5 years ago. Was told could be 6 months , could be 2 years. Talked to a Mayo nurse whose aunt was on the approved waiting list 6 years. My meld was below 20. I was called with a false alarm after 2 weeks (it sounds like everyone gets one of those or a dry run). Then for real after 18 days. Much shorter than expected and than most folks but from talking to people who had liver transplants when I was there and since it seems like many within 3 - 4 months. I was told blood type was important. Mine could help or hurt me. Fewer livers but not as many folks needing the blood type. They of course don't know for sure but I would ask if your husbands might make it sooner or longer wait . Best of luck. Prayers up for your husband. (---:

Curses | @kmlowe | 5 days ago

Thanks for sharing, both of you. Heading for what will hopefully be my last barrage of tests next week, ending in a decision (or maybe deferral?). I’ll share what I learn with the community.

pgruetz | @pgruetz | 4 days ago

My meld was in the 30s I waited 3 months because I was near death, everyone is different I had a extreme case ICU for 6 months 40 blood transfusions and the list goes on and on good luck with your surgery and recovery ❤️‍🩹