What is the probability of receiving a liver transplant?

He's doing great. Only on one med. Envarsus once a day. The only lasting effect is that he is very tired all the time. I'm so happy for you getting 2 healthy organs. What a blessing. We were told other considerations go into getting the organ, but they really concentrated on that MELD score. So nice not to have to think about that anymore. How long did it take for you to get listed on UNOS and then how long to receive your organs?

@lsheerin, Congratulations to your husband on getting his liver transplant.
I understand the heartbreak of getting that first call for an organ and then having the team give it to someone else. That happened to me with my kidney transplant. However, despite the heartbreak, I had mixed feelings about not getting that first organ (which, by the way, I thought was a perfect match for me) because that first call came less than a month after being listed. Things were progressing so quickly, and I just wasn't ready. But 'm glad to say that I did finally get my transplant four months after being listed and am doing well.

Hopefully, it won't be much longer before your husband's fatigue is resolved and he's able to get out and really enjoy his new life. All the best to both of you!

Hi @jaimedavis93, waiting is really hard. May I ask what liver condition led to your needing to be put on the transplant list? Are you listed at Mayo Clinic?

I wish I would’ve known a lot more information before I had my liver transplant 2 years ago there are many factors getting one and even getting on a waiting list. I was at USC/Keck hospital in Los Angeles and they are awesome. I was considered near death and stage 4 kidney failure and I waited 4 months any longer I wouldn’t have been here. I was going to write a book about it someday

I am liisted at Mayo… And was added to the transplant waiting list in December 2024…
I went in the hospital March of 2024 and was diagnosed with End Stage Liver Disease… Cirrhosis…. I have weekly labs … My MELD is holding at 26… I see my Dr and have an MRI Friday of next week….
Just ready to have the surgery, heal, and move forward with my life!!!!

I’m glad you’re doing well… It’s definitely a lot to take in… So far I’ve been pretty healthy… Feeling okay…. A little swelling in my feet and legs and the yellowing in my eyes… but for the most part I’m feeling okay… Which is a blessing …

I was seeing yellow big time and started getting drained,, acites that’s a fun event it doesn’t hurt it worse if you don’t towards the end I was drained 9 liters every 2 days that’s when the liver is gone basically, bleeding out is another symptom 40 plus transfusions I received not every case is as bad as mine I just didn’t know how bad I was , originally I thought I had Covid

Waiting for the call is the hardest part. I waited nearly 2 years, but my natural MELD was only an 18. But I was critically ill for most of those 2 years - in and out of the hospital with sepsis. My liver failure was due to an accute gallbladder attack, that caused organ failure, pancreatitis and sclerosing cholangytis. I was lucky to survive - as I was told most patients don’t survive the organ failure - so as a result not many transplant professionals have never treated my condition and the MELD doesn’t reflect the extent of the illness. So my team applied for “exception points” due to the rarity of my condition, and the fact that the MELD did not reflect how sick I was. Ask your team if you qualify for exception points which would increase your MELD and move you higher up on the list. I was treated & listed at MGH in Boston for more than 1 year before they advised me to get listed at Mayo JAX because I was going to die of sepsis. Once at Mayo - it took another 7 months before I finally got the call that actually resulted in transplant. I am forever grateful for the wonderful transplant professionals at Mayo - but my only advice is you need to advocate for yourself. Mayo uses the team approach - which was different than the way my case was managed at MGH. At each visit at Mayo - I met with a different hepatologist - and I never was confident that they fully understood the complex nature of my diagnosis. Once my caregiver really pushed my case forward - the Mayo team got behind my case and made it happen. I just celebrated my 3 year liverversary and I feel wonderful. I daresay nearly as good as before this nightmare began. At 48 - you are the sort of patient the transplant team wants to get transplanted. You have so much life ahead. Try to exercise (even just walking) and stay as healthy as possible so that you will undergo transplant in a strong physical condition. This will make the recovery easier. Wishing you best of luck while you wait and certainly once you are transplanted.

Hi, @gerryp.

Congratulations on your 3 year liverversary, and I'm glad that you're doing and feeling so good. Continued good health and best wishes to you!

@lsheerin, I always like to hear that recioient and caregiver are doing well after the transplant surgery! For those of us with an organ transplant, it brings back many memories of our own journey and wait, and for those who are just beginning or are enduring the wait it provides hope!
How long did I wait - long story! After I was diagnosed with (PSC) Primary Sclerosing Cholangitis, I monitored carefully by my local GI for around 8 years with a low MELD score. However, once my score began to rise, it did so with a vengence. I was evaluated and approved for the UNOS list in Nov. 2008. In mid Jan. 2025 I was inactivated from the list due to possible cance in bile bile ducts. When my regional transppant center was not successful to rule mout cancer, I was referred to Mayo Clinic in Rochester, however acute kidney failure landed me in ICU and on emergency dialysis and in critical condition. Fotunately, the doctors stabilized my condition and Mayo Clinic agreed to still take me as a patient. I was flown out of ICU last week Feb. 2009 and spent 2 extra weeks in hospital at Mayo where I was diagnosed to be cancer free! My kidneys, however were deemed to be beyond recovery. I was able be reactivated on the UNOS list for a liver, and after evaluation, I was also listed for a kidney in mid March. On April 22, 2009 I was blessed to receive a successful transplant. In my mind I was ont the list for at least 10 years because my disease was a progressive one with no known cure.

My husband and I learned that miracles are always possible! For anyone waiting, I implore you to Never Give Up! We lived on prayer, hope, and one day at a time.