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Mon, May 6 8:09pm · It's not all about the MELD Score in Transplants

Yes I agree…the good news is that eveything they have checked was fine
The cardiologist who is head of the heart transplant group at TGH is doing the procedure and has assured me that it wont have any impact on my waiting. He said if there is something going on they will fix it while they are in there. Mayo has agreed to the procedure.
I think they are checking all the weak links before they list. We will see. Know more tomorrow.

Mon, May 6 4:50pm · It's not all about the MELD Score in Transplants

Well I am wondering if the Drs have any clue what path this disease will take. Going to my hep Dr tomorrow and that is one of my many questions for her.
The itchiness from excema is gone for now…but still on the fri ge. Now they are concerned about my heart so I have a heart monitor for 14 days and a catherization next Wed. Oh yes..a sleep study and test too.
The MRI I had at Mayo was all good except for a spot they found on the lung..ultrasound cleared that…
If they could only tell me what comes next…..that doesnt happen with this disease…we are all different. PS I am very fortunate to be a patient of the transplant team at Tampa General Hospital and Mayo Jax Transplant team. I have meld of 6 down from 8. So, I know Im getting very good care and they traet me as if my meld were 20. Not on the hot list deemed too early.

Wed, May 1 6:50pm · It's not all about the MELD Score in Transplants

Thank is good news. I have been hanging in for three years…Im still too early but they watch me like a hawk..all good

Mon, Apr 1 8:23am · This and That and Talk - My Transplant in Transplants

As I figured…you put it so well too. I expect it to be something in me that I will treasure..and protect..like a baby. AND we know for sure we dont want to go back to that place in time of misery. Thanks for sharing..

Sun, Mar 31 9:53pm · This and That and Talk - My Transplant in Transplants

Wow..you live an exciting life! Lol. Im just waiting for a transplant and have all this excitement ahead of me…
Im learning from everyone on this site and it helps me to accept my future.
So glad you are improving and going home…not in an ambulance!
Keep sharing when you can…and never doubt your instincts!

Sun, Mar 31 9:40pm · Primary Biliary Cholangitis and Autoimmune Hepatitis in Transplants

Hang in there…sometimes our docs dont listen..i have a great relationship with my PCP and can tell when Im getting my point across. I was REAL mad at him last week when he asked me if I was drinking…AST level was up. I pounced on him like a cat on a canary. He laughed and got the message. Also. I think communication with our specialists is difficult because they deal with so many like us. I always make a list on my phone of notes before and after each visit. That way I can go back and show them what I was talking about and when.
Im sorry you had to go through that…make sure you let them know how you feel…in the nicest way..of course..lol

Sat, Mar 30 7:13pm · This and That and Talk - My Transplant in Transplants

@heart people
Im having some heart issues to go along with my Stsge 4 cirrhosis. Mayo is going to check me out so I will be asking you all to share with me.
Ive had this liver stuff for 3 years snd understand it pretty well…the heart is a whole new ball game. I need a new dictionary for this!! Will keep you posted

Sat, Mar 30 7:05pm · This and That and Talk - My Transplant in Transplants

Out of the question…you are not allowed to be sick! I dont know how these things go but how long afer transplant do you worry about rejection? Curl up and snooze…drink lots of fluids and take what ever mefs you have been instructed. Of course its Saturday…just to make us worry a little more…lol
I go to the local cardio Dr. On Monday to see what he thinks. I had an ultra sound and bloodwork and will discuss all that with my PCP Tues. Have a 2 day appt with Mayo in Jax on the 16th. Thats a 4 hour trip but always well worth it
The good news is..my faughter Emily is coming to FL to visit next Sunday.
We will be doing some serious boating and beaching!
Please keep us posted…Im sending uou virtual hugs, prayers and chicken soup!