It's not all about the MELD Score

@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 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 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@contentandwell My li sense was revoked due to the lactulose and I don't live near any bus routes.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 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.

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.

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 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.

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.