1. < Transplants

It's not all about the MELD Score

Posted by amyintucson @amyintucson, May 19, 2018

There are lots of threads out there with questions and comments about MELD Scores. I just had my 1year/3 month pre-liver transplant review and my MELD is a 10. The doctors at Mayo/Phoenix emphasized that the MELD isn't everything as some people are sicker than their scores indicate. They have me on the "active" list and am in the discussion at their weekly team meetings. I have venous congestion that is of major concern because if it continues to grow it causes other operative problems. I have had esophageal varices banded - 6-8 times (no bleeding so far) - but that has precluded using a blood thinner to allow the body to dissolve the clot on its own. If my next upper endoscopy - in the next 2 weeks here in Tucson - shows no new varices we may try the blood thinner even with my low platelet counts. Though it increases the risk of bleeding, with weekly monitoring its a risk/reward decision. The bloid thinner will likely raise my INR and temporarily raise my MELD, it's worth a shot if the body breaks up the clot.

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

JK | @contentandwell | Aug 6, 2018
In reply to @rosemarya "@kltchrmn, I can understand your 'bittersweet' reaction to your changed transplant status due to the lowered..." + (show)
@rosemarya

@kltchrmn, I can understand your 'bittersweet' reaction to your changed transplant status due to the lowered MELD score. Liver disease has a way of causing confusion and upheaval in all aspects of life. I believe that you are making a wise choice by going to work and moving on to your goals. When/if you do become activates, there will be no way of knowing how long you will wait for a transplant or how you will be feeling. Each one of us is different and our bodies, our diseases, our medical histories play such a unique role in what will happen. You will be happy to have a normal routine that you can participate in as long as you are able.

Sometimes, with dietary modifications, avoiding alcohol and certain medications, and treatment, the liver damage can be reversed; sometimes there is no cure except transplant. I had Primary Sclerosing Cholangitis (PSC) and there is no treatment to reverse the damage. But I was monitored carefully throughout my entire time with the disease. I did have a successful transplant.

Do you know what caused your liver condition? And did you make any healthy changes that were responsible for the better score?

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@kltchrmn I was decompensated also. I suspect if you are advanced enough to have a MELD score you must be “end stage” since MELD stands for “Model for End Stage Liver Disease”. I found both of those terms to be very scary.
JK

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kltchrmn | @kltchrmn | Aug 6, 2018
In reply to @rosemarya "@kltchrmn, I can understand your 'bittersweet' reaction to your changed transplant status due to the lowered..." + (show)
@rosemarya

@kltchrmn, I can understand your 'bittersweet' reaction to your changed transplant status due to the lowered MELD score. Liver disease has a way of causing confusion and upheaval in all aspects of life. I believe that you are making a wise choice by going to work and moving on to your goals. When/if you do become activates, there will be no way of knowing how long you will wait for a transplant or how you will be feeling. Each one of us is different and our bodies, our diseases, our medical histories play such a unique role in what will happen. You will be happy to have a normal routine that you can participate in as long as you are able.

Sometimes, with dietary modifications, avoiding alcohol and certain medications, and treatment, the liver damage can be reversed; sometimes there is no cure except transplant. I had Primary Sclerosing Cholangitis (PSC) and there is no treatment to reverse the damage. But I was monitored carefully throughout my entire time with the disease. I did have a successful transplant.

Do you know what caused your liver condition? And did you make any healthy changes that were responsible for the better score?

Jump to this post

Being end stage and too healthy don’t really jive with each other!

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JK | @contentandwell | Aug 6, 2018

@kltchrmn it really is difficult to understand. My MELD was 28 but I still liked good, even my PCP commented that I looked perfectly healthy. Then on the other hand there are people with MELDs in the teens who are miserable. I would love to understand this better than I do.
JK

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3 replies
kltchrmn | @kltchrmn | Aug 6, 2018
In reply to @contentandwell "@kltchrmn it really is difficult to understand. My MELD was 28 but I still liked good,..." + (show)
@contentandwell

@kltchrmn it really is difficult to understand. My MELD was 28 but I still liked good, even my PCP commented that I looked perfectly healthy. Then on the other hand there are people with MELDs in the teens who are miserable. I would love to understand this better than I do.
JK

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I’ve recently had people tell me how healthy I look. This is, in part, due to the 110 lb weight loss since last June to get my BMI down to a level that’s good for surgery. I didn’t look particularly sick when my MELD was high.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 7, 2018
In reply to @contentandwell "@kltchrmn it really is difficult to understand. My MELD was 28 but I still liked good,..." + (show)
@contentandwell

@kltchrmn it really is difficult to understand. My MELD was 28 but I still liked good, even my PCP commented that I looked perfectly healthy. Then on the other hand there are people with MELDs in the teens who are miserable. I would love to understand this better than I do.
JK

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@kltchrmn, Congratulations on taking care of yourself and getting your body in a good condition for the eventual surgery.

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1 reply
jodeej | @jodeej | Aug 7, 2018

@kltchrmn @contentandwell @rosemarya my husband looked healthy and actually felt reasonably good up to the day of his surgery. His MELD was a 30 when he transplanted. He did get exception points due to having cancer in his liver. There were many times that we'd go to an appointment and almost feel guilty because there were so many people there that looked and obviously felt much worse.
Blessings,
JoDee

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1 reply
JK | @contentandwell | Aug 7, 2018
In reply to @contentandwell "@kltchrmn it really is difficult to understand. My MELD was 28 but I still liked good,..." + (show)
@contentandwell

@kltchrmn it really is difficult to understand. My MELD was 28 but I still liked good, even my PCP commented that I looked perfectly healthy. Then on the other hand there are people with MELDs in the teens who are miserable. I would love to understand this better than I do.
JK

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@congratulations on getting in better shape and on your phenomenal weight loss. I too lost a substantial amount of weight in preparation, along with frequenting my health club more frequently for water exercises, primarily, but my loss after my diagnosis was about 45 pounds. Prior to that I had gradually lost about 40 - 45 pounds.
I am reading a book, “Obsessed” by Mika Brzezinski about being weight and food obsessed. It’s really good, and frankly helps me to look at my past weight as being very influenced by our culture. Some thin people, like her, actually are food obsessed but have managed to control it.
I think reading it will help me to keep the weight off. It has made very conscious of things.
JK

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JK | @contentandwell | Aug 7, 2018
In reply to @jodeej "@kltchrmn @contentandwell @rosemarya my husband looked healthy and actually felt reasonably good up to the day..." + (show)
@jodeej

@kltchrmn @contentandwell @rosemarya my husband looked healthy and actually felt reasonably good up to the day of his surgery. His MELD was a 30 when he transplanted. He did get exception points due to having cancer in his liver. There were many times that we'd go to an appointment and almost feel guilty because there were so many people there that looked and obviously felt much worse.
Blessings,
JoDee

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@jodeej your husband sounds similar to what my position was, except for the fact that the waiting room was large and for all of the gastro patients, not just the hepatology patients, so many more than just Pre-transplant.
After transplant, at my hospital, the transplant patients are the only ones there and then I really did feel different. I felt so fortunate to be so well as quickly as I did after transplant.
I am really excited for you and your husband to be on the other side now.
JK

REPLY
kltchrmn | @kltchrmn | Sep 3, 2018
In reply to @rosemarya "@kltchrmn, Congratulations on taking care of yourself and getting your body in a good condition for..." + (show)
@rosemarya

@kltchrmn, Congratulations on taking care of yourself and getting your body in a good condition for the eventual surgery.

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My newest twist: I have developed an inguinal hernia that can’t be fixed until after the transplant. With a MELD of 11 it’s a long time of being careful and watching what I do ☹️

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3 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 3, 2018
In reply to @kltchrmn "My newest twist: I have developed an inguinal hernia that can’t be fixed until after the..." + (show)
@kltchrmn

My newest twist: I have developed an inguinal hernia that can’t be fixed until after the transplant. With a MELD of 11 it’s a long time of being careful and watching what I do ☹️

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@kltchrmn, I want to share a discussion with you where you will be able to meet another member (@hogan_g1937) who has discussed preliver transplant/hernia experience.
https://connect.mayoclinic.org/discussion/hernia-surgery-scheduled/

Yes, waiting can seem endless. Sending you a virtual hug. I care, and I am rooting for you.

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