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Liver transplant: The big question

Posted by Curses @kmlowe, Jun 7 5:16pm

For those who are willing to share who have already had a transplant, if done at Mayo, AZ, how long were you listed, and what was your MELD at the time? Any factors impacting urgency or delay for you?

For those still waiting, same questions: when were you listed and what is your current MELD? Any factors impacting urgency or delay?

I know that the wait is whatever the wait is, and no one can really say definitively, but your experience will help me understand more as I approach my transplant evaluation.

Thanks for your consideration!

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

Curses | @kmlowe | Jun 11 9:19pm

Thanks for sharing - so scary and fortunate.

REPLY
nancyraine | @nancyraine | 5 days ago
In reply to @pgruetz "My Meld was in the 30s and I waited 7 months from diagnosis to getting a..." + (show)
@pgruetz

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

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I am currently waiting on mine going on 9 years I recently missed the call for an opportunity I've been so depressed about it . I pray I get another chance. My current meld score is 8 but they have me listed as exception points because of liver lesions. I'm need the group and I never had anyone to talk to about my fears and questions. Can I ask how was it after your transplant? How do you feel and was it hard? I hearslot of hard stories,sad ones. My anxyhas been through the roof since the call. What should I expect,? Right now I feel normal minus the lactose I take every day and feeling tired. I'm so nervous I won't make it .

REPLY
nancyraine | @nancyraine | 5 days ago
In reply to @azkellyw "Diagnosed 12 years ago, on and off the waiting list, no longer anxiously awaiting, current MELD..." + (show)
@azkellyw

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.

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I have the exact story! Mine is at an ,8 on the transplant list for 10 my doctors has added me higher on exception points saying I have cancer but I currently don't . I got the call for a transplant but couldn't do it because I had a cold . But I've been struggling with risking the transplant or not it's so scary. I feel great right now .as if there's nothing wrong. It's so confusing . But I do get tired and do take lactose everyday. My family doesn't understand why I. Sceptical on doing the transplant. I'm currently inactive since I missed the chance on getting one .on the 26 of June I got to see if the will reinlist me.

REPLY
azkellyw | @azkellyw | 4 days ago

Getting others to understand why we might opt out of having one is impossible. They aren't living the same life you are and most are being selfish for themselves that you live longer. OK, maybe selfish is to strong but you need to worry about you and not them. The whole journey is confusing and I think those that "had" to have a transplant quickly are the lucky ones. This dragging on and on is for the birds. We have way too much time to contemplate all sorts of scenarios that make us crazy. My reason for not wanting or wanting surrounds the post trx medication. I've never finished a course of steroids, ever, and the thought of living each day on them isn't something I want to do. I'm hoping for some new miracle to come to light that makes that part easier. I've also lost two friends to cancer after their trx's and I'd don't want to go the way they went, we become so vulerable. We are the one's making the ultimate decision to or not to so you have to learn as much as possible of the pros and cons so we can make informed decisions when that call comes in. I'm happily not listed at this time. Good luck.

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