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.

@contentandwell

@gaylea1 do you have friends close enough that maybe each could get you out of the house once a week or so? I am sure that would help. I too would get very down if stuck in the house all day.
JK

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@contentandwell I do go to physio every Wed at the transplant clinic but it is exhausting. I find trying to hold conversation so hard these days. I have a chest cold right now and am hoping it won't affect me if I get my call.

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@contentandwell

@rosemarya @gaylea1 Rosemary, you are absolutely right. Too often in the past I did nothing for a person who was going through some health problems because I didn’t want to interfere. I am working on this.
JK

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@contentandwell I have to learn to ask for help and to take it when offered. I've always been so independent.

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@gaylea1

@contentandwell I have to learn to ask for help and to take it when offered. I've always been so independent.

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@gaylea1 I hope if you do get the call that the cold will not interfere.
I too find it difficult to accept help, even from my husband. I think if you have lived independently that is often true. I was almost 28 when I got married. Prior to that I was a very independent single.
JK

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In January 2019, my Meld score was 26. I went on a Vegetarian diet, and increased my exercise 1-4 miles daily walking. I already gave up drinking and smoking in Oct 2018. Blood work several weeks ago showed a decreased Meld score of 12. Doctor says unless my score is higher, they may not take me as a transplant candidate. My question is. Is such an improvement in labs and Meld score an indication that liver is healing itself and starting to regrow healthy tissue. Thanks for reading and any input. John.

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@johnshaw

In January 2019, my Meld score was 26. I went on a Vegetarian diet, and increased my exercise 1-4 miles daily walking. I already gave up drinking and smoking in Oct 2018. Blood work several weeks ago showed a decreased Meld score of 12. Doctor says unless my score is higher, they may not take me as a transplant candidate. My question is. Is such an improvement in labs and Meld score an indication that liver is healing itself and starting to regrow healthy tissue. Thanks for reading and any input. John.

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@johnshaw Great question, I am interested in the answer also. My MELD never went down at all, despite exercise and diet.
JK

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I am assuming that the Meld score indicates the livers level of functioning and whether it is regenerating. Just had my labs done yesterday. Doc is interested in kidneys and how they are doing. They won’t take me on transplant list unless I have a score of 14

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@johnshaw

I am assuming that the Meld score indicates the livers level of functioning and whether it is regenerating. Just had my labs done yesterday. Doc is interested in kidneys and how they are doing. They won’t take me on transplant list unless I have a score of 14

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Hi @johnshaw, welcome to Connect. You'll notice that I moved your message to this existing discussion about MELD scores. You may be interesting in reading through the previous messages. @amyintucson @hogan_g1937 @gaylea1 and others asked similar questions.

You may also be interested in this blog article by Mayo Transplant staff.
– The MELD Score: Definitions and Frequently Asked Questions https://connect.mayoclinic.org/page/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/

Are you a candidate for a liver and kidney transplant?

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I’m a liver candidate after destroying my liver with years of drinking. I’ve always functioned well, have worked as a professional counselor in a hospital, yet my drinking increased after I retired in 2017. I ended up in a coma and two months in the hospital. I haven’t used alcohol or tobacco for 7 months and am quite involved with AA. Over the last 3 months I have done well. My lifestyle has changed, I take meds as prescribed, and my Meld went down. It is not my intent to judge causes of cirrhosis or end stage liver disease. I know that my illness is severe as my liver showed it was barely able to function. Perhaps when I see my liver doctor tomorrow I will get further direction on being presented to the transplant team. Or, I may have to wait and see if the liver can heal itself. I don’t know and perhaps that uncertainty causes some degree of anxiety. Staying healthy, eating right and regular exercise seems to help my situation. From what I read Meld score isn’t everything and not a guarantee of a transplant. Anyway it’s almost Spring out here Wash DC, and it’s so nice outside. I hope everyone has a good weekend.

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@johnshaw

I’m a liver candidate after destroying my liver with years of drinking. I’ve always functioned well, have worked as a professional counselor in a hospital, yet my drinking increased after I retired in 2017. I ended up in a coma and two months in the hospital. I haven’t used alcohol or tobacco for 7 months and am quite involved with AA. Over the last 3 months I have done well. My lifestyle has changed, I take meds as prescribed, and my Meld went down. It is not my intent to judge causes of cirrhosis or end stage liver disease. I know that my illness is severe as my liver showed it was barely able to function. Perhaps when I see my liver doctor tomorrow I will get further direction on being presented to the transplant team. Or, I may have to wait and see if the liver can heal itself. I don’t know and perhaps that uncertainty causes some degree of anxiety. Staying healthy, eating right and regular exercise seems to help my situation. From what I read Meld score isn’t everything and not a guarantee of a transplant. Anyway it’s almost Spring out here Wash DC, and it’s so nice outside. I hope everyone has a good weekend.

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@johnshaw Congratulations on ending you use of alcohol, I’m sure that must have required a lot of strength.

I will be very interested in hearing what your doctor (hepatologist?) says. I had always heard that cirrhosis cannot be reversed, it can be stalled at best, but I have heard some people say they cured it! Since cirrhosis is basically scars on your liver I do not understand how scars can be eliminated. It does sound as if you are making effort to prevent further damage and I know people can do well if the damage does not progress so hopefully you are one of those people.

Enjoy DC, it’s dreary here in NH. The cherry blossoms in DC are probably gone by now. My daughter lived in DC before moving to NYC. I like DC more.
JK

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@contentandwell

@johnshaw Congratulations on ending you use of alcohol, I’m sure that must have required a lot of strength.

I will be very interested in hearing what your doctor (hepatologist?) says. I had always heard that cirrhosis cannot be reversed, it can be stalled at best, but I have heard some people say they cured it! Since cirrhosis is basically scars on your liver I do not understand how scars can be eliminated. It does sound as if you are making effort to prevent further damage and I know people can do well if the damage does not progress so hopefully you are one of those people.

Enjoy DC, it’s dreary here in NH. The cherry blossoms in DC are probably gone by now. My daughter lived in DC before moving to NYC. I like DC more.
JK

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My original MELD score was 25 and it only went up from there. When I finally reached 30+ they deemed me ill enough to top the transplant wait list. It took 17 months on the wait list to be transplanted. My blood type and small physique held me back. I was diagnosed with cirrhosis and the scarring was irreversable. I'm not sure if they'd transplant you with such a low score but they do take each case individually.

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@gaylea1

My original MELD score was 25 and it only went up from there. When I finally reached 30+ they deemed me ill enough to top the transplant wait list. It took 17 months on the wait list to be transplanted. My blood type and small physique held me back. I was diagnosed with cirrhosis and the scarring was irreversable. I'm not sure if they'd transplant you with such a low score but they do take each case individually.

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@gaylea1 That’s just how long I waited also. I’m just under 5’3”, same height as my donor, and blood type B which I understand is an advantage, along with A and AB. I was MELD 28 but due for an increase when my transplant came through. Things had just gone downhill drastically and quickly.
JK

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@contentandwell

@gaylea1 That’s just how long I waited also. I’m just under 5’3”, same height as my donor, and blood type B which I understand is an advantage, along with A and AB. I was MELD 28 but due for an increase when my transplant came through. Things had just gone downhill drastically and quickly.
JK

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@contentandwell my blood type is O+ and I'm about 5'2". Yes, things went pretty south from about 29 and up. That was about last fall. They transplanted me fairly quickly afyer that. I believe I was about 33. I'm just having (more) problems now. My white blood cell count has plummeted and they've taken me off cellcept. I was on 1000 mg a day. Now I take 2mg tacrolimus and 5mg prednisone (amongst 12 other pills) daily. Fingers crossed 🤞🤞

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@gaylea1

@contentandwell my blood type is O+ and I'm about 5'2". Yes, things went pretty south from about 29 and up. That was about last fall. They transplanted me fairly quickly afyer that. I believe I was about 33. I'm just having (more) problems now. My white blood cell count has plummeted and they've taken me off cellcept. I was on 1000 mg a day. Now I take 2mg tacrolimus and 5mg prednisone (amongst 12 other pills) daily. Fingers crossed 🤞🤞

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@gaylea1 I didn’t expect to get a transplant until I was in the 30s, at that time (2016) that was the MELD where they were generally done in Boston. I was lucky, probably due to my blood type. I had gone downhill so fast and so much that my husband and my sister thought they were going to lose me. Until then I had done amazingly well.

Sorry to hear you are having problems now. I did have a problem with my creatinine increasing when I was on tacrolimus so they changed me to sirolimus and things have been great. Sirolimus is used less frequently after liver transplants but it’s working great for me, and I like just having to take it once a day. I do also take 5mg of prednisone.

Please let is know how your white blood cell count is doing. I hope the lower dose solves the problem.
JK

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@contentandwell

@johnshaw Congratulations on ending you use of alcohol, I’m sure that must have required a lot of strength.

I will be very interested in hearing what your doctor (hepatologist?) says. I had always heard that cirrhosis cannot be reversed, it can be stalled at best, but I have heard some people say they cured it! Since cirrhosis is basically scars on your liver I do not understand how scars can be eliminated. It does sound as if you are making effort to prevent further damage and I know people can do well if the damage does not progress so hopefully you are one of those people.

Enjoy DC, it’s dreary here in NH. The cherry blossoms in DC are probably gone by now. My daughter lived in DC before moving to NYC. I like DC more.
JK

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@contentandwell I don't think MELD score necessarily correlates with level of cirrhosis. A little over 2 years ago, when I found out I had liver disease, my MELD was 40. My last blood test prior to transplant (10 months ago), my MELD was 14. But I was still getting 7-8 liters of ascites fluid drained per week, so obviously, my liver was still not good.

I think that the fact that creatinine is a factor in the MELD calculation is where some of the disconnect happens. To test my little theory, if my creatinine was at the same level today as it was when I was first diagnosed (over 8), and my sodium, bilirubin and INR were what they are today, my MELD score would be 21. As it is, with all 4 MELD factor in "normal" range and a new liver, my MELD score is 9.

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@mickj

@contentandwell I don't think MELD score necessarily correlates with level of cirrhosis. A little over 2 years ago, when I found out I had liver disease, my MELD was 40. My last blood test prior to transplant (10 months ago), my MELD was 14. But I was still getting 7-8 liters of ascites fluid drained per week, so obviously, my liver was still not good.

I think that the fact that creatinine is a factor in the MELD calculation is where some of the disconnect happens. To test my little theory, if my creatinine was at the same level today as it was when I was first diagnosed (over 8), and my sodium, bilirubin and INR were what they are today, my MELD score would be 21. As it is, with all 4 MELD factor in "normal" range and a new liver, my MELD score is 9.

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@mickj You were transplanted with a MELD of 14? That's amazing. What region was that in? From what I know, the MELD helps to determine how sick a person is and who is the greatest need of a transplant, which is why cancer in your liver increases your MELD. My daughter's husband's cousin was a developer of the MELD formula. I should have grilled him about it at my daughter's wedding in December 2017.
JK

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