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.

Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 22, 2019
In reply to @johnshaw "My labs Friday were excellent. Saturday was my 8 mo sobriety date and Sunday my Doc..." + (show)
@johnshaw

My labs Friday were excellent. Saturday was my 8 mo sobriety date and Sunday my Doc called me. Fathers Day. She indicated my liver function is improving and if my labs continue to improve by August, she may take me off the liver transplant list. My Meld was 26 in Jan now it is less than 12. I’ve changed my lifestyle completely.
Clean from drugs and alcohol, vegetarian diet, running up to 5 miles a day. It feels good being this healthy.

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@johnshaw Congratulations on your eight months sobriety. Having an improving MELD score has given you unexpected rewards in your sobriety, hasn't it? Each day a new beginning, and you can do it!
Ginger

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amyintucson | @amyintucson | Jun 22, 2019
In reply to @johnshaw "My labs Friday were excellent. Saturday was my 8 mo sobriety date and Sunday my Doc..." + (show)
@johnshaw

My labs Friday were excellent. Saturday was my 8 mo sobriety date and Sunday my Doc called me. Fathers Day. She indicated my liver function is improving and if my labs continue to improve by August, she may take me off the liver transplant list. My Meld was 26 in Jan now it is less than 12. I’ve changed my lifestyle completely.
Clean from drugs and alcohol, vegetarian diet, running up to 5 miles a day. It feels good being this healthy.

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@johnshaw Congrats on your improving health. The journey is hard and it sounds like you are handling it well.

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JK | @contentandwell | Jun 23, 2019
In reply to @johnshaw "My labs Friday were excellent. Saturday was my 8 mo sobriety date and Sunday my Doc..." + (show)
@johnshaw

My labs Friday were excellent. Saturday was my 8 mo sobriety date and Sunday my Doc called me. Fathers Day. She indicated my liver function is improving and if my labs continue to improve by August, she may take me off the liver transplant list. My Meld was 26 in Jan now it is less than 12. I’ve changed my lifestyle completely.
Clean from drugs and alcohol, vegetarian diet, running up to 5 miles a day. It feels good being this healthy.

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Great news, @johnshaw I am so happy to hear you are doing so well. I hope you have continued improvement and can stay off of the transplant list.
JK

REPLY
luckonetj | @luckonetj | Jun 23, 2019
In reply to @johnshaw "My labs Friday were excellent. Saturday was my 8 mo sobriety date and Sunday my Doc..." + (show)
@johnshaw

My labs Friday were excellent. Saturday was my 8 mo sobriety date and Sunday my Doc called me. Fathers Day. She indicated my liver function is improving and if my labs continue to improve by August, she may take me off the liver transplant list. My Meld was 26 in Jan now it is less than 12. I’ve changed my lifestyle completely.
Clean from drugs and alcohol, vegetarian diet, running up to 5 miles a day. It feels good being this healthy.

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Great to hear you are doing well and abstaining from alcohol. The lower MELD score is huge. It shouldn't take getting on the transplant list to change one's ways and to start a new life. Human nature is weird that way. Totally eliminate rationalization of good or bad behavior. Live an empirical life. My one-year transplant anniversary is next week and my lab tests are steller.

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1 reply
gaylea1 | @gaylea1 | Jun 23, 2019
In reply to @luckonetj "Great to hear you are doing well and abstaining from alcohol. The lower MELD score is..." + (show)
@luckonetj

Great to hear you are doing well and abstaining from alcohol. The lower MELD score is huge. It shouldn't take getting on the transplant list to change one's ways and to start a new life. Human nature is weird that way. Totally eliminate rationalization of good or bad behavior. Live an empirical life. My one-year transplant anniversary is next week and my lab tests are steller.

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I didn't even know it was possible to have such a dramatic change in your MELD score. I was put on the list when first diagnosed with a MELD score of 26. I didn't drink and followed a regime set out by my transplant team. My score just continued to rise and had my transplant 7 months ago. Shows how we are all so different in our journey.

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1 reply
amyintucson | @amyintucson | Jun 23, 2019
In reply to @gaylea1 "I didn't even know it was possible to have such a dramatic change in your MELD..." + (show)
@gaylea1

I didn't even know it was possible to have such a dramatic change in your MELD score. I was put on the list when first diagnosed with a MELD score of 26. I didn't drink and followed a regime set out by my transplant team. My score just continued to rise and had my transplant 7 months ago. Shows how we are all so different in our journey.

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If there is a condition in your liver that is fixable then a lower MELD score is possible and desired if changes can be made. HEP-C, drug, alcohol and diet (choices) are the most common ones. The HEP-C medicines have made great strides in "curing" HEP-C, which I got from the transplanted liver.

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johnshaw | @johnshaw | Jun 23, 2019

I have a good team, and they advise me to be prepared for anything. In Jan 2019 I was so sick that my family gathered for my final days. I was in a coma for 4 days had severe HE with weekly fluids removed from my abdomen. I had decided to get clean from alcohol and change my life style. By March I was ambulatory walking daily and eating a healthier diet. My labs continued to improve and my Meld score dropped. My doctor reminds me that I may still get sick and need a transplant, just not right now. I do a lot of Vol work with AA and the hospital as I am a LCPC and 30+ years working in a hospital. Although the damage to my liver was caused by alcohol abuse, I do what I can now, to stay healthy and help others.

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3 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 23, 2019
In reply to @johnshaw "I have a good team, and they advise me to be prepared for anything. In Jan..." + (show)
@johnshaw

I have a good team, and they advise me to be prepared for anything. In Jan 2019 I was so sick that my family gathered for my final days. I was in a coma for 4 days had severe HE with weekly fluids removed from my abdomen. I had decided to get clean from alcohol and change my life style. By March I was ambulatory walking daily and eating a healthier diet. My labs continued to improve and my Meld score dropped. My doctor reminds me that I may still get sick and need a transplant, just not right now. I do a lot of Vol work with AA and the hospital as I am a LCPC and 30+ years working in a hospital. Although the damage to my liver was caused by alcohol abuse, I do what I can now, to stay healthy and help others.

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@johnshaw A friend told me just today that the secret to life is to help others. I am sure those whose lives you have touched, are grateful.
Ginger

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jodeej | @jodeej | Jun 23, 2019
In reply to @johnshaw "My labs Friday were excellent. Saturday was my 8 mo sobriety date and Sunday my Doc..." + (show)
@johnshaw

My labs Friday were excellent. Saturday was my 8 mo sobriety date and Sunday my Doc called me. Fathers Day. She indicated my liver function is improving and if my labs continue to improve by August, she may take me off the liver transplant list. My Meld was 26 in Jan now it is less than 12. I’ve changed my lifestyle completely.
Clean from drugs and alcohol, vegetarian diet, running up to 5 miles a day. It feels good being this healthy.

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Congratulations!! Keep up the great work. 🙂
Blessings,
JoDee

REPLY
JK | @contentandwell | Jun 23, 2019
In reply to @johnshaw "I have a good team, and they advise me to be prepared for anything. In Jan..." + (show)
@johnshaw

I have a good team, and they advise me to be prepared for anything. In Jan 2019 I was so sick that my family gathered for my final days. I was in a coma for 4 days had severe HE with weekly fluids removed from my abdomen. I had decided to get clean from alcohol and change my life style. By March I was ambulatory walking daily and eating a healthier diet. My labs continued to improve and my Meld score dropped. My doctor reminds me that I may still get sick and need a transplant, just not right now. I do a lot of Vol work with AA and the hospital as I am a LCPC and 30+ years working in a hospital. Although the damage to my liver was caused by alcohol abuse, I do what I can now, to stay healthy and help others.

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@johnshaw Your story is amazing. I never knew a person could turn things around like that once they had cirrhosis. If your MELD was that high I presume there must have been extensive liver damage. If the damage is still there, and it must be, doing so many of the right things has somehow allowed the remainder of your liver to compensate for the poorly functioning part.
You really deserve to be proud of how well you have turned things around.

Like @gaylea1 I was following all of my doctor's instructions regarding diet yet my MELD continued to increase.

@luckonetj I am now approaching three years post-transplant and my lab tests are stellar also. I had been going monthly for them but after the last one, they called me and said that since they had been so consistently good for so long I can drop to every other month!
JK

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