Liver transplant - Let's support each other

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.

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

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.

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.

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 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/

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.....

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.

The symptoms can be quite varied. Personally, my biggest issue was encephalopathy. It can your whole mental status. But others include the yellow skin which can lead to a lot of itching. Esaphogeal varices and bleeding can be another problem. You need to be watchful of these. Most of the other symptoms are pretty invisable.

@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?