Liver transplant - Let's support each other

That’s one thing I was pondering. I’m like the dead walking but my MELD stays the same! It’s insane. You said it’s mandatory to wait 6 months after getting a tumor? Is that when it is diagnosed by scans or biopsy or what?
Thank you, Karen

I have always thought that the MELD score had very limited criteria. I was 12 for quite awhile and this is after 2 episodes of esophageal varices bleeding. I know it needs to be an objective measurement, but it is too limited, in my opinion. And regarding an apt to be seen by an MD, sometimes you have to be assertive as your own advocate. I am a retired RN and have been vocal and questioning all along this 12 year journey. Best Wishes.

I have always thought that the MELD score had very limited criteria. I was 12 for quite awhile and this is after 2 episodes of esophageal varices bleeding. I know it needs to be an objective measurement, but it is too limited, in my opinion. And regarding an apt to be seen by an MD, sometimes you have to be assertive as your own advocate. I am a retired RN and have been vocal and questioning all along this 12 year journey. Best Wishes.

@khh, As a patient, I had to look up Metuvar 4, and I learned that it indicates the amount of inflammation in the liver and the stage represents the amount of scarring or fibrosis. I recognize some of the symptoms that you are describing from my own liver disease journey. Connect is a patient to patient group, and as such, we share our experiences and are not qualified to give medical advice.

The reason that I asked you about a diagnosis is because that diagnosis is how your doctor and medical team will be able to identify what you need in the way of treatment and care. I encourage you to continue your proactive self advocacy as you seek answers. Have you been able to schedule an appointment with the doctor yet?

You almost have to hope for a tumor. I had similar issue with my MELD score not going over twelve for years. But the encephalopathy was really bad. I finally got a tumor and after a sixth month waiting period (mandatory) I got my exception points. Three days later, had a transplant.

You may have seen a few statements I had entered. Please read them. I would like your opinion as far as what I need to do and where you think I could go.
Will I be able to talk to other programs considering they have not put me on the list. The Np is see is looking at a number. My meld has stayed just below 15, however, my scans, CT’s density of my liver etc are much much worse. I need everything to be looked at together. I’m also a physician (not liver specialist), but I am fully aware of many of the problems. I am just getting the run around here just like my 2 friends who died on the waiting list I need y’all’s advice as to what to do. I want to continue working and helping people too. I’m only 52

@lmctif as a pre-transplant liver patient I am interested in symptoms that occur before surgery and tips on how to remedy them. Sharing in others journeys seems to be very helpful and combats the lonliness. Just knowing that others are waiting and discussing post transplant expectations are beneficial.