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.

kltchrmn | @kltchrmn | Aug 3, 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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That’s what I’ve been told. I continue to be considered a good candidate for transplant and have been encouraged to look for a living donor.

Kim

REPLY
kltchrmn | @kltchrmn | Aug 3, 2018
In reply to @kltchrmn "I just had my one year check up and have been on the for the same..." + (show)
@kltchrmn

I just had my one year check up and have been on the for the same time. My MELD was high enough at one point for me to be activated. At this check up my MELD has gone down to 11. I feel bittersweet about it. I’m going to work on moving on to goals I thought I would have to address after transplant - change in housing, etc.

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@contentandwell The side effects continue to make me feel “sick,” fatigue and watching carefully for hepatic encephalopathy take my time.

REPLY
JK | @contentandwell | Aug 3, 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

@kltchrmn There is considerably more encouragement for living donors now even than there was before my 09.2016 transplant. Some hospitals are really encouraging it. I believe it was the University of Pittsburgh that has actually done more living donor transplants in the last year than deceased donors! I hope you are able to find someone who will do that for you. My son and daughter both did volunteer initially but I didn't want my son to because having to lay low for about a month after could have seriously derailed his career, but my daughter could have without that being a problem. I got her the information but then unfortunately she could not do it.
JK

REPLY
JK | @contentandwell | Aug 3, 2018
In reply to @kltchrmn "I just had my one year check up and have been on the for the same..." + (show)
@kltchrmn

I just had my one year check up and have been on the for the same time. My MELD was high enough at one point for me to be activated. At this check up my MELD has gone down to 11. I feel bittersweet about it. I’m going to work on moving on to goals I thought I would have to address after transplant - change in housing, etc.

Jump to this post

@kltchrmn The HE is the worst. Has your doctor prescribed xifaxan? My hepatologist did for me and it kept me free from Hepatic Encephalopathy for almost a year, and then as my condition worsened I did have another HE episode and had to resume taking lactulose along with the xifaxan.
I fortunately was not too sick most of the time, except when I took lactulose.
JK

REPLY
kltchrmn | @kltchrmn | Aug 3, 2018
In reply to @kltchrmn "I just had my one year check up and have been on the for the same..." + (show)
@kltchrmn

I just had my one year check up and have been on the for the same time. My MELD was high enough at one point for me to be activated. At this check up my MELD has gone down to 11. I feel bittersweet about it. I’m going to work on moving on to goals I thought I would have to address after transplant - change in housing, etc.

Jump to this post

I take Xifaxan and Lactulose. Lactulose does not cause me any trouble as I’m on such high doses of diuretics. The last time I had a paracentesis was in June of 2017 at May and they drained 14 litres of fluid! Have not needed one since!

REPLY
kltchrmn | @kltchrmn | Aug 3, 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

I had a cousin in England who started the process, but was not encouraged by his doctor due to age (57 like me!) and just having given up a 40 year smoking habit. My nephews are only just out of college so I haven’t asked them because they’re just starting their careers.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 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

I am sorry about the confusion that I caused with my previous response.

Here is what I found in the Patient Care & Health Information from Mayo Clinic on Cirrhosis (https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487)
"Cirrhosis occurs in response to damage to your liver. Each time your liver is injured, it tries to repair itself. In the process, scar tissue forms. As cirrhosis progresses, more and more scar tissue forms, making it difficult for the liver to function.
Decompensated cirrhosis is the term used to describe the development of specific complications resulting from the changes brought on by cirrhosis. Decompensated cirrhosis is life-threatening.
The liver damage done by cirrhosis generally can't be undone. But if liver cirrhosis is diagnosed early and the cause is treated, further damage can be limited and, rarely, reversed."

@contentandwell and @kltchrmn , Thanks for bringing this to my attention.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 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

@kltchrmn - Those are encouraging words that you are a good candidate for a living donor. I want to share this Transplant information with a Living Donor and Recipient Toolkit.
https://connect.mayoclinic.org/page/transplant/

REPLY
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?

Jump to this post

@rosemarya thanks for the clarification.
JK

REPLY
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

The term that’s been used to describe me is end stage liver disease.

REPLY
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