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

@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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@contentandwell Yep, MELD one week prior to transplant was 14. And I was only on the transplant list for 1 month. I'm in Phoenix. My blood type is A+ and I'm 6'1", neither of which are horribly unique. I guess I'm just extremely fortunate.

One interesting thing is that I have never had a liver biopsy. In hindsight, I've wondered if my body was healing enough to not need the transplant, but based on the fact that I had 8.5 liters of ascites fluid the day before transplant (1 week's worth) and the surgeon's note that my liver was "shrunken and cirrhotic", transplant was the right thing to do.

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I was told they take your highest Meld score and go off that. They were draining between 9 and 12 liters every week for 3 months from me. I would gain 25 lbs and then lose it once drained. My Meld score got as high as 28 or 29. When I received my liver in Phoenix, i was on list 30 days. I am also blood type B which they said helped as that put me at top of list for that blood type. When i had my transplant, my meld was in low 20's but the draining was taking toll on kidneys and rest of body.

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@bikermike

I was told they take your highest Meld score and go off that. They were draining between 9 and 12 liters every week for 3 months from me. I would gain 25 lbs and then lose it once drained. My Meld score got as high as 28 or 29. When I received my liver in Phoenix, i was on list 30 days. I am also blood type B which they said helped as that put me at top of list for that blood type. When i had my transplant, my meld was in low 20's but the draining was taking toll on kidneys and rest of body.

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@bikermike I am happy for you that you have had a transplant and it sounds as you are doing well now. It’s so nice to be on the other side of transplant.
JK

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My liver doctor emailed me. My electrolytes and kidney function look good, lab mostly unchanged. I still have itchiness at night, up every hour using the bathroom, and feel fatigued during the day. I haven’t had any Ascites or weight gain for 2 months. I will speak to her tomorrow. My thoughts are since my condition is stable, with my last Meld score being a 12, that my case will not be presented to the transplant team (Univ Pa-Philly) and it will just be just wait and see. I wish there was more of a definitive course of direction.

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@johnshaw

My liver doctor emailed me. My electrolytes and kidney function look good, lab mostly unchanged. I still have itchiness at night, up every hour using the bathroom, and feel fatigued during the day. I haven’t had any Ascites or weight gain for 2 months. I will speak to her tomorrow. My thoughts are since my condition is stable, with my last Meld score being a 12, that my case will not be presented to the transplant team (Univ Pa-Philly) and it will just be just wait and see. I wish there was more of a definitive course of direction.

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@johnshaw I am sure you must be feeling very frustrated. It's good that you haven't had ascites or weight gain, I never had ascites until very shortly before my transplant, although I did get edema at times. Both were very bad near the end. I had lost weight previously and it was a good thing I hadn't thrown out my old clothes because they were the only things that fit me, and I could only put slippers on my feet.

I guess you have to be happy that things are stable and that your condition is such that your MELD is low. I have heard that some people can go for very lengthy amounts of time without having a transplant, so perhaps you will be one of those. If you are feeling well, have few symptoms (no HE?) then it sounds like you can live a pretty normal life. I would assume they must consider your cirrhosis to be compensated.
JK

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Saw doc today. Doing so well that won’t be presented for transplant. A wait and see situation. Labs and sonogram at the end of the month

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Thank is good news. I have been hanging in for three years…Im still too early but they watch me like a hawk..all good

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@johnshaw

My liver doctor emailed me. My electrolytes and kidney function look good, lab mostly unchanged. I still have itchiness at night, up every hour using the bathroom, and feel fatigued during the day. I haven’t had any Ascites or weight gain for 2 months. I will speak to her tomorrow. My thoughts are since my condition is stable, with my last Meld score being a 12, that my case will not be presented to the transplant team (Univ Pa-Philly) and it will just be just wait and see. I wish there was more of a definitive course of direction.

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@johnshaw – My liver disease was originally diagnosed at UPenn, the hepatologist was Karen Krok (now at Penn State Health.) I lived in Central NJ at the time and was very pleased with the treatment. I moved to Tucson in 2011.

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Fatigue during the day, itchiness at night along with bathroom trips every hour. I’m glad I’m not sicker but doc has made it clear my liver is quite diseased. Of course she won’t predict the future so I will live with that uncertainty. For the time being I run 5 miles a day, eat only vegetarian and attend AA meetings. I do enjoy the fellowship of the patients on this group and the people at AA. I truly believe that fellowship helps us stay grounded and provides an avenue for support.

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@johnshaw

Fatigue during the day, itchiness at night along with bathroom trips every hour. I’m glad I’m not sicker but doc has made it clear my liver is quite diseased. Of course she won’t predict the future so I will live with that uncertainty. For the time being I run 5 miles a day, eat only vegetarian and attend AA meetings. I do enjoy the fellowship of the patients on this group and the people at AA. I truly believe that fellowship helps us stay grounded and provides an avenue for support.

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Hi, @johnshaw. I am a transplant recipient. I received both liver and kidney simultaneously from the same deceased donor. That was in 2009. I was diagnosed with liver disease almost 8 years before I became a transplant candidate. If my memory serves correctly, my score was mostly steadily rising. In all honesty, I never paid any attention to that number because how I felt told me what I needed to know. I was more concerned with trying to maintain some level of physical activity and to combat the excessive nausea as well as itching and ascites. I can understand how you feel as you are living with the unknowing. I want to congratulate you for your strength to overcome your alcohol dependence and to develop a new healthy lifestyle. That will be a major benefit as you move forward with whatever path your liver takes.
I hope that you looked at the information that was posted earlier that says "Since your health condition can change frequently, your doctor will send you to the lab for updated blood work routinely, so they can assess your condition often"….The MELD Score: Definitions and Frequently Asked Questions https://connect.mayoclinic.org/page/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/
I am sorry that you feel so poorly, but it sounds like your doctor is keeping a close watch on your liver. Will you keep us updated?
I have always been told that all liver disease has some similarities, yet no two of us are alike in what we experience. The best we can hope for is to be patient and to do everything to promote out best healthy living during the difficult journey so that we are helping our bodies prepare for eventual surgery.
I am happy that you have joined our fellowship! I invite you to brouse thru all of the discussions and to know that you are welcome to join in anywhere.
What has your doctor said she wants to learn from the sonogram at end of May?

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Hi Rosemary
I have had frank conversations with my liver doctor and I continue to be hopeful. I do service work for AA, giving rides, and meeting with those who request it. I take my meds and have blood work done monthly. I also do a weekly urinalysis for drugs and alcohol. Patients who test positive are often dropped from the transplant list, per most insurance companies. I am in the best shape of my life, ironically since I almost drank myself to death. I know that at some point, my health may decline to the point where I need a transplant. Until than, I will continue to live a productive, healthy life, and will deal with symptoms as they appear. Ideally I would love my liver to heal itself so that I do not need any further intervention. My doctor has made it clear that my liver is not viable and at some point it will need to be replaced. I will deal with that if / when that point arrives. As all patients, I do live with that anxiety over when that point arrives. Thank you for your response.

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@johnshaw

Hi Rosemary
I have had frank conversations with my liver doctor and I continue to be hopeful. I do service work for AA, giving rides, and meeting with those who request it. I take my meds and have blood work done monthly. I also do a weekly urinalysis for drugs and alcohol. Patients who test positive are often dropped from the transplant list, per most insurance companies. I am in the best shape of my life, ironically since I almost drank myself to death. I know that at some point, my health may decline to the point where I need a transplant. Until than, I will continue to live a productive, healthy life, and will deal with symptoms as they appear. Ideally I would love my liver to heal itself so that I do not need any further intervention. My doctor has made it clear that my liver is not viable and at some point it will need to be replaced. I will deal with that if / when that point arrives. As all patients, I do live with that anxiety over when that point arrives. Thank you for your response.

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@johnshaw It sounds as if yes, a transplant is in your future but not immediate future. I too was anxious and actually thought of not having one, but as my condition worsened it changed my mind. Now, being post-transplant by 2.5 years, I think how crazy I was to not want one. My life is so improved. Sure, there are some difficulties due to the immunosuppressants, but I can live with those relatively small problems.
From what I have read, the vast majority of patients who have liver transplants have few problems afterward, and as long as you keep up doing as you are, staying in shape, etc., then I am sure you will be the same. I worked hard at getting into better shape prior to my liver transplant and it really did make a difference.
JK

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@rosemarya

Hi, @johnshaw. I am a transplant recipient. I received both liver and kidney simultaneously from the same deceased donor. That was in 2009. I was diagnosed with liver disease almost 8 years before I became a transplant candidate. If my memory serves correctly, my score was mostly steadily rising. In all honesty, I never paid any attention to that number because how I felt told me what I needed to know. I was more concerned with trying to maintain some level of physical activity and to combat the excessive nausea as well as itching and ascites. I can understand how you feel as you are living with the unknowing. I want to congratulate you for your strength to overcome your alcohol dependence and to develop a new healthy lifestyle. That will be a major benefit as you move forward with whatever path your liver takes.
I hope that you looked at the information that was posted earlier that says "Since your health condition can change frequently, your doctor will send you to the lab for updated blood work routinely, so they can assess your condition often"….The MELD Score: Definitions and Frequently Asked Questions https://connect.mayoclinic.org/page/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/
I am sorry that you feel so poorly, but it sounds like your doctor is keeping a close watch on your liver. Will you keep us updated?
I have always been told that all liver disease has some similarities, yet no two of us are alike in what we experience. The best we can hope for is to be patient and to do everything to promote out best healthy living during the difficult journey so that we are helping our bodies prepare for eventual surgery.
I am happy that you have joined our fellowship! I invite you to brouse thru all of the discussions and to know that you are welcome to join in anywhere.
What has your doctor said she wants to learn from the sonogram at end of May?

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@rosemarya
Well I am wondering if the Drs have any clue what path this disease will take. Going to my hep Dr tomorrow and that is one of my many questions for her.
The itchiness from excema is gone for now…but still on the fri ge. Now they are concerned about my heart so I have a heart monitor for 14 days and a catherization next Wed. Oh yes..a sleep study and test too.
The MRI I had at Mayo was all good except for a spot they found on the lung..ultrasound cleared that…
.whew!
If they could only tell me what comes next…..that doesnt happen with this disease…we are all different. PS I am very fortunate to be a patient of the transplant team at Tampa General Hospital and Mayo Jax Transplant team. I have meld of 6 down from 8. So, I know Im getting very good care and they traet me as if my meld were 20. Not on the hot list deemed too early.

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@jeanne5009

@rosemarya
Well I am wondering if the Drs have any clue what path this disease will take. Going to my hep Dr tomorrow and that is one of my many questions for her.
The itchiness from excema is gone for now…but still on the fri ge. Now they are concerned about my heart so I have a heart monitor for 14 days and a catherization next Wed. Oh yes..a sleep study and test too.
The MRI I had at Mayo was all good except for a spot they found on the lung..ultrasound cleared that…
.whew!
If they could only tell me what comes next…..that doesnt happen with this disease…we are all different. PS I am very fortunate to be a patient of the transplant team at Tampa General Hospital and Mayo Jax Transplant team. I have meld of 6 down from 8. So, I know Im getting very good care and they traet me as if my meld were 20. Not on the hot list deemed too early.

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@jeanne5009, I hope that you get some good news tomorrow with your hep Dr. I think that it might be a good thing that you are not on the list yet, because all of these complications would cause you to be inactivated. So maybe it is best that you can get everything addressed now while your liver is maintaining itself.
I used to use the analogy of a row boat that kept popping new holes as fast as the old ones could be plugged. On my good days I could picture an old cartoon image. At least the boat never sank, but it was hard work to keep it afloat.

Stay strong. You are in good care.

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@rosemarya

@jeanne5009, I hope that you get some good news tomorrow with your hep Dr. I think that it might be a good thing that you are not on the list yet, because all of these complications would cause you to be inactivated. So maybe it is best that you can get everything addressed now while your liver is maintaining itself.
I used to use the analogy of a row boat that kept popping new holes as fast as the old ones could be plugged. On my good days I could picture an old cartoon image. At least the boat never sank, but it was hard work to keep it afloat.

Stay strong. You are in good care.

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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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