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What is the probability of receiving a liver transplant?

Transplants | Last Active: Apr 19 6:35am | Replies (29)

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@gerryp

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.

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Replies to "Waiting for the call is the hardest part. I waited nearly 2 years, but my natural..."

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!