Liver transplant - Let's support each other

I also developed a tumor about 8 mos after diagnosis of stage 4 cirrhosis due to asymptomatic long standing Hep C. It was 5.5 cm and diffuse rather than encapsulated. The doctors quickly got me into a radiologic treatment called Theraspheres. It was a 2 part procedure which ended with implantation of radiated beads. The hepatology docs stated that this could be a silver lining to my dire situation. Well, I had a CT scan to measure the tumor. The reading was not successful, as it was blurry and white and could not be measured. A repeat CT was done, as the review board could not give me those "bonus points". The second was not able to be read, either. So I never did get those exception points. Three months later I got my transplant.....

I just came up on this Q & A - so grab a quick lunch, because it is today-

Tue, Mar 10, 2020
2:30pm to 3:00pm CT
Video Q&A - Do you have questions about COVID-19?
https://connect.mayoclinic.org/webinar/video-qa-do-you-have-questions-about-covid-19/

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

It does. My issue is that the NP I have seen has not done anything regarding my issues, not even let me have an appt with a doctor (and I’m a doctor). I know she is only looking at my MELD, but my scans, biop, pulmonary artery pressure etc are way worse than my numbers show. Just wondering if others had that issue and I see at least one person did.
Thank you.

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.

Thank you for your input. I can see so many of you have had different issues along the way. It really helps to hear and be aware of what I may come across. Thank you again.
Karen

Unfortunately, the MELD is what they look at. I believe that it is the only objective way they have. I was in the same boat. I only got a transplant after developing a tumor in my liver. Wish I could have better news.

Mine was found in a CT scan. They took care of the tumor right away, but the six month wait is to make you don't develop cancer elsewhere making you ineligible for a transplant.

Hi Karen. My name is Tammy. On December 16th, 2019, I had a liver transplant at the Mayo facility here in Jacksonville, FL. In FL, your MELD score has a lot to do with you being qualified or not for a liver transplant. My MELD score was 23. Of course, that is not the only thing they base it on, but it is certainly factored in there. I wish you the best of luck.

I go to the mayo in Rochester mn tomorrow for more testing monday and Tuesday