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.

JK | @contentandwell | Oct 18, 2018
In reply to @gaylea1 "@contentandwell I am in London Ontaro and am in the transplant range. MELD scores here typically..." + (show)
@gaylea1

@contentandwell I am in London Ontaro and am in the transplant range. MELD scores here typically transplant 28+. I'm at 30. I went through a "dry run" where I was called in as a backup when a liver recipient was too ill to transplant. Had an ECG done, chest xray, numerous vitals and blood tests and an IV inserted. Admitted and waited for 6 hours to be told the other patient was going ahead with the surgery and I was sent home.

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@gaylea1 I can imagine how difficult that must have been for you. I was only called the one time, and i don’t recall it ever being mentioned that it was possible I would be called to be a backup. When they called it sounded pretty certain that it was “a go”, the only possible thing being that they might split the liver. That didn’t happen so I guess the other potential recipient was not as good a match.
I did have a similar experience for a much less serious surgery. I was about to have a knee replacement, IV in and all, and the surgeon came to me and told me could not do it because my platelet count was too low. We knew my platelets were borderline so my hemotologist put me on prednisone which did bring them up, but they plummeted again. Of course that was from my yet to be diagnosed cirrhosis. I did finally have that knee done a year after my transplant. They said I could do it in 6 months bit I couldn’t bear the thought of another hospital stay.
I am sure if you were that close that the real call will come very soon. We will all be waiting to hear when it does.
JK

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JK | @contentandwell | Oct 18, 2018
In reply to @gaylea1 "@contentandwell My MELD is 30. I've been on the wait list 15 months now. I keep..." + (show)
@gaylea1

@contentandwell My MELD is 30. I've been on the wait list 15 months now. I keep getting told...the next 2 months and then....the next 2 months on and on.

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@gaylea1 I can totally sympathize. That was one of my greatest fears, that I would have to stop driving. Regarding other forms of transportation, I am in the same situation as you.
JK

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JK | @contentandwell | Oct 18, 2018
In reply to @gaylea1 "@contentandwell My MELD is 30. I've been on the wait list 15 months now. I keep..." + (show)
@gaylea1

@contentandwell My MELD is 30. I've been on the wait list 15 months now. I keep getting told...the next 2 months and then....the next 2 months on and on.

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@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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1 reply
JK | @contentandwell | Oct 18, 2018
In reply to @rosemarya "gaylea, You have mentioned that you are homebound now. Do you have any friends nearby ,..." + (show)
@rosemarya

gaylea, You have mentioned that you are homebound now. Do you have any friends nearby , or not so nearby, that you could ask to drop in for a short visit now and then? It is OK to ask. I found out that people often want to do something, but don't want to impose or else don't know what to do. Very few people are familiar with our needs as we wait for our transplant.
I realize that the last thing that you probably want to do right now is to visit/socialize, however sometimes a short visit and a cup of tea, is something to look forward to, and gives you a temporary diversion.
What you are going thru is the real pre-transplant waiting experience - it is not like a TV version that I once tried to watch (never again) . Let's face it, waiting and getting sicker is not hollywood material. I am thinking about you.

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@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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1 reply
JK | @contentandwell | Oct 18, 2018
In reply to @rosemarya "kitchrmn, My fatigue came on gradually, and then it hit hard. I was thankful that breathing..." + (show)
@rosemarya

kitchrmn, My fatigue came on gradually, and then it hit hard. I was thankful that breathing was automatic because didn't n=have to initiate that action. I was fortunate to have a wonderful assistant and a team teaching situation, so that I could manage to slip out of the classroom on some days when my role was not essential.
It is uncomfortable for me to say that I am happy that your score is rising, but I really am because I hope that you will be eligible for your transplant sooner.
Is your next appointment in 3 months? That seems to be the standard schedule for most liver patients that I have talked to. Do you have to travel far to go to your transplant center?

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@kitchrmn @rosemarya when they discovered malignant lesions my oncologist actually said it was good news that sounded bad, because it would increase my MELD. A rising score can e a blessing.
JK.

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gaylea1 | @gaylea1 | Oct 19, 2018
In reply to @contentandwell "@gaylea1 do you have friends close enough that maybe each could get you out of the..." + (show)
@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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gaylea1 | @gaylea1 | Oct 19, 2018
In reply to @contentandwell "@rosemarya @gaylea1 Rosemary, you are absolutely right. Too often in the past I did nothing for..." + (show)
@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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1 reply
JK | @contentandwell | Oct 19, 2018
In reply to @gaylea1 "@contentandwell I have to learn to ask for help and to take it when offered. I've..." + (show)
@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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johnshaw | @johnshaw | Apr 26, 2019

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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1 reply
JK | @contentandwell | Apr 27, 2019
In reply to @johnshaw "In January 2019, my Meld score was 26. I went on a Vegetarian diet, and increased..." + (show)
@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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