MELD score goes up and down, does anyone else have this?

Posted by azkellyw @azkellyw, Mar 26 11:28am

I've been on and off the waiting list for twelve years now with no transplant as of today. My MELD score doesn't stay stable long enough to remain on the waiting list for the last two years. It jumps between 20 to 8. Yesterday's labs show it's back to 8. I need several other surgeries once the transplant is healed but I just can't get there. My heptologist at Mayo called it MELD purgatory as I have all the crummy parts of needing a transplant without having one. I'd be glad it was low if I didn't need so many other issues fixed; degrading discs in my lumbar needs fusing, collapsed nasal passages needs balloon surgery, pinched nerve in my neck on going nerve studies to determine best way to correct, carpel tunnel release both wrists (second time) and shoulder correction. I'd like to get these fixed since my quality of life is in decline but I'm stuck with the low MELD. It's too low for any exception points to make a difference. Does anyone else have an irratic (or have had) MELD scores? I'm getting discourged and feel like ditching the whole thing.

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azkellyw | @azkellyw | Apr 8 10:34am

In reply to @pgruetz "I believe some hospitals get funding or it’s easier to write alcoholism killed the liver instead..." + (show)

My hospital isn't the problem, it's the people outside the hospital that can only think one way. I'm on a new approach to my physical health by working on my mental health. This stuff wears on you after a while and you forget who you are as a person instead of a chart in an office. I'm going to focus on reducing anxiety and stress from my life to see if my old self is still in there. I really don't see a transplant in my near future, or even the next few years. I need to find me and not let it define me. Make sense?

azkellyw | @azkellyw | Apr 7 2:39pm

In reply to @pgruetz "You can’t go to a dentist afterwards for at least 6 months afterwards get all you..." + (show)

Can't get anything fixed due to platelets in the 20's. If I could get one of the list of things fixed it would be my sinuses but the capilaries are too close to the surface inside the nose and ears. I'll deal with dental later, it's not bugging me yet.

pgruetz | @pgruetz | Apr 7 11:24am

In reply to @azkellyw "Exactly! It was the perfect storm of many things that created it and all anyone can..." + (show)

I believe some hospitals get funding or it’s easier to write alcoholism killed the liver instead of finding the real reason even though some hospitals won’t give you a transplant if you are an alcoholic kinda ironic, I was poisoned but it was on only one record and not investigated

azkellyw | @azkellyw | Apr 7 10:19am

In reply to @pgruetz "23 different ways to lose a liver and everyone chooses that is cause because it sounds..." + (show)

Exactly! It was the perfect storm of many things that created it and all anyone can come up with is drinking, so frustrating. Like lung cancer is just from smoking, kidney disease is just from drugs, heart disease is just from eating fatty foods and smoking. It gets so old!!! I'm glad at least you understand.

pgruetz | @pgruetz | Apr 6 10:06am

In reply to @jaimedavis93 "I’ve been on the Liver Transplant waiting list since 12/4/24… My MELD is 26.. And went..." + (show)

I wish I comes sooner than later I was waiting in ICU for months they were just keeping me alive plus I had to go through a month of testing to see if I could survive the surgery and they repaired some things too

pgruetz | @pgruetz | Apr 6 10:02am

In reply to @azkellyw "I've never drank. It's not alcohol related. That's a stigma." + (show)

23 different ways to lose a liver and everyone chooses that is cause because it sounds the worst mine was a combination of a lot of different things and I wasn’t a heavy drinker either didn’t even drink beer , one of my nurses fingernail gals died because the acetone killed it she didn’t drink at all

pgruetz | @pgruetz | Apr 6 9:58am

In reply to @lcd "You may want to have any procedures done pretransplant. I think the recommendations are to wait..." + (show)

You can’t go to a dentist afterwards for at least 6 months afterwards get all you need done before the surgery

jaimedavis93 | @jaimedavis93 | Apr 5 7:59am

I’ve been on the Liver Transplant waiting list since 12/4/24… My MELD is 26.. And went to 20 in Aug 2024… Since then, my MELD remains 25 or 26 and holds steady at those numbers.. I’m so ready to get the surgery, heal, and move forward with my life!!!!

Rosemary, Volunteer Mentor | @rosemarya | Mar 28 8:10pm

@azkellyw, My own MELD was steady for years, then began a steady decline that made me eligible to be referred to a transplant center. Then for me, it dropped rapidly. Primary Schlerosing Cholangitis (PSC) was the cause of my liver failure and the resulting transplant.

Here is some information about MELD score. I hope that it provides some information that applies to your situation. We are all different, and our MELD scores seem to sometimes have a mind of their own.
- Liver Transplantation: Understanding the MELD Score
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/liver-transplantation-understanding-the-meld-score/
This is a discussion in which other members share their MELD scores.
- MELD Score went down
https://connect.mayoclinic.org/discussion/meld-score-went-down/
Azkellyw -You are welcome to jump right into the conversation.