Liver transplant: The big question

Liver transplant in Mayo AZ 1.5 years ago. I don't recall my exact meld but it was below 20. I did have liver cancer which could have been a factor. I was told my blood type could really help or hurt me. If a liver did come up fewer folks need that type. But fewer come up. I was told to expect from 6 months to 2 years. But one nurse who had an aunt said it took her 6 years. I would ask them about your blood type and how that would affect the process. My entire story is miraculous starting when my liver cancer was caught by accident (had no symptoms) when an endoscopy caught the wrong part of the body it was supposed to , caught a tiny tip of the liver, where my 3 cancerous tumors were. They had the perfect liver for me 18 days after I made the list. I have heard that soon is very uncommon. Hoping and praying you get one soon (---:

Hi. My meld was 28 when I received my liver in Feb, '24 in Jax. I had my first dry run 2 days after I was placed on the list then 1 more dry run about a week later. I got the final call and my new liver, Lucy, 20 days after being listed.
(We stayed in Jacksonville after the first dry run which, I was today, helped)
Yours is coming...stay positive!

Craig
Thank you for the detail - 1.5 yr post transplant? You “sound” great - and yes, you are a living miracle! Are you a rare blood type? I’m O+, which could also be good or bad, right? I’m not yet listed, but will learn after my evaluation in two weeks whether or not I will be. I’ve been feeling great (on all the typical meds), but my MELD has been 23, 14, 22, 18 in the last 6 mos - and I think I feel ascites creeping back in (mostly I noticed because I’ve gained 4lb this week, after being stable for the last 3 or 4). I’ll let the community know what the outcome is as soon as I know.

Heidi
I remember your story about the dry runs! It is so wonderful to hear people like you and Craig and others who, post-transplant, feel great. So many people seem to post about health challenges, feeling worse, etc., which worries me, and will be a factor in my own decision about having a transplant or not. I know there are no guarantees at all, so I continue to watch the community, as questions, and research.

My wife also had O+ blood type, and was a big determinate in her getting a new liver in 3 weeks, which they told us once approved in late December, and got the call on January 9th. I don't remember her Meld score, as it was describe to us the list for O+ is not as long, and usally the wait time is much less than others, good luck to you! You got this.

Hi Yes overall I am doing really well. Have had 4 trips overall to Mayo AZ re stenosis of the hepatic arteries but after my new stent it seems to be doing well. Also have CMV virus but doing well with Valcyte on that . When I was in AZ for the transplant there were 6 Mayo liver transplant patients (5 men and one woman) at the hotel. The wives/ women would gather at the pool after dark (when it was cooler) and share what was going on and share some wine. They still keep in touch (year and a half later) via text (four in CA, two in CO). And from what I hear 4 are doing great, one is doing ok and one not so much. In all cases the liver transplant while stressful and difficult was by far the best long term option. I think my meld scores were similar to yours. My blood type is B positive. I think you will accepted, be post transplant and doing well sooner than you think ! Hang in there ! Prayers up !!

My Meld was in the 30s and I waited 7 months from diagnosis to getting a transplant I was considered near death, mine was done at USC/Keck hospital
Be in the best shape/ weight before the transplant because the recovery process is long, I didn’t get that chance which made it way worse and had to learn how to walk twice and afterwards only eat very healthy organic foods zero fast food . You need to give your new liver the best possible chance, I hope it goes well for you

All of your information, comments, and good will have brought me to tears. I tend to be a positive person and pretty analytical, so haven’t yet had emotional swings - I assume outcomes are always the best they can be. But this group - the hope, camaraderie, openness is the most amazing part of being on this journey. I remember during Covid that many thought people were going to end up being kinder after the shared fear, loss, and overall experience of the pandemic; yet, I don’t think it turned out that way at all - seems that people reverted to being focused more on themselves than those around them. Yet here, everyone, no matter where they are in their journey, has been so amazing. You all prove my belief that humans are intrinsically good and kind. Thank you for all of you.

I’ve been doing my best to keep my weight down, and started walking daily two months ago, between 1-2 miles on a treadmill. Been struggling with weight (actually only up about 5lb) since being out on Ursodiol (they say a side-effect is weight gain, but the root side effect is that I eat more because I’m hungry all the time!). Also worried that ascites maybe be creeping back up. But, end of day, I’m in better shape than I was about a year ago when everything with my cirrhosis came to a head. And I’m trying to eat healthy, never been a fast food eater, so at least that’s one thing in my life that hasn’t changed! I’m mostly missing cheese!

Diagnosed 12 years ago, on and off the waiting list, no longer anxiously awaiting, current MELD is down to 8, it's been as high as the mid 30's. Being monitored by Mayo AZ, no urgency, blood type A+. My meld goes up and down like a yo-yo, it will be other factors that will force trx other than MELD. Been on the fence all this time with wanting one and not. I still wish you luck on that eval, not something you forget easily but a milestone in your journey.