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.

@jeanne5009

Yes I agree…the good news is that eveything they have checked was fine
The cardiologist who is head of the heart transplant group at TGH is doing the procedure and has assured me that it wont have any impact on my waiting. He said if there is something going on they will fix it while they are in there. Mayo has agreed to the procedure.
I think they are checking all the weak links before they list. We will see. Know more tomorrow.

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@jeanne5009 That is good news, that everything they have checked is fine. Be confident that they will fix whatever they need to so that a transplant will be possible. I was so afraid that something would be found when I was going through all of the tests but they assured me that if anything did come up they would take care of it.

I am a little confused, you are going to Mayo for tests but when you get to the point of transplant it will be at Tampa? It sounds as if there are a number of good transplant hospitals in Florida. When I first started at Mass General they told me that they generally transplanted at a higher MELD and suggested that I might want to look into hospitals in Florida and Indiana. I had talked to them at Mayo in MN and was just about to move forward when my transplant came through in Boston at MELD 28. That was a very Hallelujah moment.
JK

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@hogan_g1937

My husband has a MELD Score 30. Even though his MELD is considered to be high and possibly first on the transplant list he is not physically sick. It has been a couple of years since he has been hospitalized with HE and Ascites. Yes he is in a lot of pain most days and he push through it. He does drive, keep the yard cut and just about anything he wants to do. So I guess the MELD does not mean the sickest. Just a little confused about the MELD and what it really means as far as your overall health and placement on the transplant list.

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I am happy to say that I am nine months post transplant with no complications. I had Asophagial varasies ten plus years ago and nearly bled out. I developed Acidies 7 months into apstaning from Alcohol consumption and learned during one of two parasyntethys hospitalizations that I had a meld score of 27. I was told by my liver specialists that I had end stage Liver disease. He referred me to a transplant surgeon. Before I could be evaluated for a liver transplant. I contracted E-Coli and my Meld core caped at 40. I was told I was in the 45 range. I was transferred to a transplant hospital were I was put on the transplant list and received a gift of life within three days. Just the other day I opened a letter from the hospital informing me my Meld score is 40 and I will not be leaving the hospital without a liver transplant.10 months late. GOD BLESS!

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@luckonetj

I am happy to say that I am nine months post transplant with no complications. I had Asophagial varasies ten plus years ago and nearly bled out. I developed Acidies 7 months into apstaning from Alcohol consumption and learned during one of two parasyntethys hospitalizations that I had a meld score of 27. I was told by my liver specialists that I had end stage Liver disease. He referred me to a transplant surgeon. Before I could be evaluated for a liver transplant. I contracted E-Coli and my Meld core caped at 40. I was told I was in the 45 range. I was transferred to a transplant hospital were I was put on the transplant list and received a gift of life within three days. Just the other day I opened a letter from the hospital informing me my Meld score is 40 and I will not be leaving the hospital without a liver transplant.10 months late. GOD BLESS!

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@luckonetj, Welcome to Mayo Connect! Thank you for sharing your exciting success story here! Congratulations on your transplant!

Are you interested in any post transplant tips? I invite you to join me and others in: Self-Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed-post/self-care-tips-for-transplant-patients/

As a recipient, I am especially thrilled to celebrate your successful transplant. You have had quite a pretransplant journey, How has your life changed since your life changing event 9 months ago?

Liked by jodeej

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@luckonetj

I am happy to say that I am nine months post transplant with no complications. I had Asophagial varasies ten plus years ago and nearly bled out. I developed Acidies 7 months into apstaning from Alcohol consumption and learned during one of two parasyntethys hospitalizations that I had a meld score of 27. I was told by my liver specialists that I had end stage Liver disease. He referred me to a transplant surgeon. Before I could be evaluated for a liver transplant. I contracted E-Coli and my Meld core caped at 40. I was told I was in the 45 range. I was transferred to a transplant hospital were I was put on the transplant list and received a gift of life within three days. Just the other day I opened a letter from the hospital informing me my Meld score is 40 and I will not be leaving the hospital without a liver transplant.10 months late. GOD BLESS!

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@luckonetj I too welcome you to Connect. You had quite a journey along the way to transplant. It sounds as if it was a very good thing that you were already in the hospital when a liver became available.
I am also post-liver transplant, I received my transplant in September 2016 and have done great post-transplant.
@rosemarya asks some interesting questions. I hope we hear from you some more.
JK

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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

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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@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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@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

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@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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@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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@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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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

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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@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

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@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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