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meld score is a 12 ?

Transplants | Last Active: Apr 12 1:55pm | Replies (20)
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@nusscass

Out of curiosity how long has your MELD been 12?
I'm stuck on 8 for 4 years. It's being studied, persistently low MELD
Problem is the disease is still marching on.
Im not at Mayo bc of cost above my regular insurance

I've sought help finding anywhere that plans for tjis
My doc at UAB in Birmingham told me when I lost weight that maybe it Shocked my system into stabilizing
That was the last time I saw him bc I may only be a 34 yr veteran critial care nurse ,CRNP. He said I wont need a transplant for 10-15 yrs! I am Decompensated 4 yrs! Im having trouble finding center that fights for the low melds
If I stayed where I was, Id never even make the list
Im so sick Im disabled
Does anyone have experience and know of other hospitals that are trying to get us listed appropriately. My next step is Medically Assisted death. Im not going to have a long, hopeless death bc of my stuck MELD. Please, if anyone knows other hospitals, please! Im only 56
Thanks and good luck to all.
Cassie

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Replies to "Out of curiosity how long has your MELD been 12? I'm stuck on 8 for 4..."
Rosemary, Volunteer Mentor | @rosemarya | Apr 11 2:31pm

@nusscass, I want to reply to your curiousity about MELD Score being stable at 8. As for me, I was diagnosed with a non-curable progressive liver disease, Primary Sclerosing Cholangitis (PSC) nearly 10 years before my MELD reached acceptance to the Liver Transplant Clinic at regional University Medical Center. During those years, my symptoms gradually increased while I was monitored by my local gastroenterologist (GI). My MELD score increased rapidly over the following months along with progressing symptoms. My age was similar tou yours, between 50-60.
When I read your message, I could not see whether you are under the care of a GI or a liver specialist. I can even feel your frustration and your hopelessness.
@nusscass, Out of my curiosity to you- Are you seeing your doctor regularly? Has he/she offered any medical interventions for your 'disabling' symptoms - or whether they are related to your liver?
I would encourage you to get 2nd opinion or even transfer your mdical care elsewhere. Have you considered a 2nd opinion?

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