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.

@gaylea1

@jodeej thanks. I'm trying so hard but I'm at MELD 30 and more frustrated than ever. I am so tired of being sick. 2 years now and my MELD has only moved from 25 to 30. I have been putting my faith in prayers but as we all know the decision will be made when best suited. My days are long and tiring. I am just so fatigued, mentally and physically. It's really taking it's toll on Me. I have no quality of life right now.

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@gaylea1 I don’t recall if you are a transplant candidate in the US, or elsewhere. If the US, what region are you in, and do you know at what MELD transplants typically occur?
JK

@gaylea1

@rosemary I have to admit I am feeling so lost. I've been sick for so long I almost feel like giving up. I feel like my call will never come.

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@gaylea1 I think all of us on here empathize with the waiting.There are definitely days I can't get out of my own way. I had weaned off the low dose Lexapro I was taking last year, but I found I needed it to help get by. I've been dealing with Sarcoidosis and its side effects for 10 years and I try to do what I can do. My passion is kiln-formed glass art – and until about 2 years ago, I would go the local studio 2-3 times a week. Now, with my own kiln at home, I still can't get myself motivated. Knowing that there are others in worse shape than I am is what keeps me feeling grateful.

@contentandwell

@gaylea1 I don’t recall if you are a transplant candidate in the US, or elsewhere. If the US, what region are you in, and do you know at what MELD transplants typically occur?
JK

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@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.

@contentandwell My li sense was revoked due to the lactulose and I don't live near any bus routes. I am housebound and alone 6am to 5pm.

@contentandwell

@gaylea1 don’t ever give up. Sure, there are days when you feel like it, but you have to hope for the future. I did extremely well until sometime in August 2016, and then things started going downhill fast. I gained about 35 pounds of water weight, and I felt very poorly. I was told i would not get a transplant until at least November and felt despair that I couldn’t endure feeling that bad for that long. My husband didn’t tell me until afterward that he thought that he was going to lose me, and my sister did also. Then on September 22 I got the miraculous call so much sooner than anticipated. My transplant occurred at @ 12:30 A.M. on September 23. It still seems surreal to me. One thing that amazes is how calm both my husband and I were on the 1.5 hour drive!
Your time will come, probably very soon, try to think positively.
JK

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@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.

@gaylea1

@rosemarya I feel your warmth and empathy. I do trust in the Lord and know I shouldn't lose faith. I'm just in despair and I guess that's normal. I do pray for the transplant donor's family and hope they are consoled with the fact that they have given a gift of life through their loved one.

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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.

@kltchrmn

Got my three month MELD update today: up from 11 to 16. Makes me feel better as I was concerned it wouldn’t change much. Dealing with exhaustion now – resting in all my spare time so I can keep going to my part-time job. Thinking about going on disability through my employer.

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Hi @kitchrmn, Is the fatigue a new symptom for you? I remember how I would melt into the couch after a day of teaching. At first, I tried to blame it on a hard day of teaching. But soon learned that it was my advancing liver disease. It is good that you are being monitored.

Are you currently on the transplant list? Or are you approaching your evaluation/listing as your MELD score gets higher?

@rosemarya

Hi @kitchrmn, Is the fatigue a new symptom for you? I remember how I would melt into the couch after a day of teaching. At first, I tried to blame it on a hard day of teaching. But soon learned that it was my advancing liver disease. It is good that you are being monitored.

Are you currently on the transplant list? Or are you approaching your evaluation/listing as your MELD score gets higher?

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@rosemarya I’ve been tired from the start. However, the exhaustion came upon me this summer. I teach 24 hours per week and seem to do nothing but rest so I can work!

Been on the list since June 2017. Had a MELD of 26 at one point.

@kltchrmn

@rosemarya I’ve been tired from the start. However, the exhaustion came upon me this summer. I teach 24 hours per week and seem to do nothing but rest so I can work!

Been on the list since June 2017. Had a MELD of 26 at one point.

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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?

I’m glad it’s rising, too. My appointments are every six months, but they’ve got me coming in December this time rather than January. I go to Rochester and it’s only 1.5 hours.

@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

Liked by amyintucson, gaylea1

@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

Liked by gaylea1

@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

@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.

Jump to this post

@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

@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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