It's not all about the MELD Score

Hi Rosemary
I have had frank conversations with my liver doctor and I continue to be hopeful. I do service work for AA, giving rides, and meeting with those who request it. I take my meds and have blood work done monthly. I also do a weekly urinalysis for drugs and alcohol. Patients who test positive are often dropped from the transplant list, per most insurance companies. I am in the best shape of my life, ironically since I almost drank myself to death. I know that at some point, my health may decline to the point where I need a transplant. Until than, I will continue to live a productive, healthy life, and will deal with symptoms as they appear. Ideally I would love my liver to heal itself so that I do not need any further intervention. My doctor has made it clear that my liver is not viable and at some point it will need to be replaced. I will deal with that if / when that point arrives. As all patients, I do live with that anxiety over when that point arrives. Thank you for your response.

Jump to this post

Hi, @johnshaw. I am a transplant recipient. I received both liver and kidney simultaneously from the same deceased donor. That was in 2009. I was diagnosed with liver disease almost 8 years before I became a transplant candidate. If my memory serves correctly, my score was mostly steadily rising. In all honesty, I never paid any attention to that number because how I felt told me what I needed to know. I was more concerned with trying to maintain some level of physical activity and to combat the excessive nausea as well as itching and ascites. I can understand how you feel as you are living with the unknowing. I want to congratulate you for your strength to overcome your alcohol dependence and to develop a new healthy lifestyle. That will be a major benefit as you move forward with whatever path your liver takes.
I hope that you looked at the information that was posted earlier that says "Since your health condition can change frequently, your doctor will send you to the lab for updated blood work routinely, so they can assess your condition often"....The MELD Score: Definitions and Frequently Asked Questions https://connect.mayoclinic.org/page/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/
I am sorry that you feel so poorly, but it sounds like your doctor is keeping a close watch on your liver. Will you keep us updated?
I have always been told that all liver disease has some similarities, yet no two of us are alike in what we experience. The best we can hope for is to be patient and to do everything to promote out best healthy living during the difficult journey so that we are helping our bodies prepare for eventual surgery.
I am happy that you have joined our fellowship! I invite you to brouse thru all of the discussions and to know that you are welcome to join in anywhere.
What has your doctor said she wants to learn from the sonogram at end of May?

Jump to this post

@rosemarya
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...
.whew!
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.

Jump to this post

@jeanne5009, I hope that you get some good news tomorrow with your hep Dr. I think that it might be a good thing that you are not on the list yet, because all of these complications would cause you to be inactivated. So maybe it is best that you can get everything addressed now while your liver is maintaining itself.
I used to use the analogy of a row boat that kept popping new holes as fast as the old ones could be plugged. On my good days I could picture an old cartoon image. At least the boat never sank, but it was hard work to keep it afloat.

Stay strong. You are in good care.

Jump to this post

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.

Jump to this post

My husband has a MELD Score 30. Even though his MELD is considered to be high and possibly first on the transplant list he is not physically sick. It has been a couple of years since he has been hospitalized with HE and Ascites. Yes he is in a lot of pain most days and he push through it. He does drive, keep the yard cut and just about anything he wants to do. So I guess the MELD does not mean the sickest. Just a little confused about the MELD and what it really means as far as your overall health and placement on the transplant list.

Jump to this post

I am happy to say that I am nine months post transplant with no complications. I had Asophagial varasies ten plus years ago and nearly bled out. I developed Acidies 7 months into apstaning from Alcohol consumption and learned during one of two parasyntethys hospitalizations that I had a meld score of 27. I was told by my liver specialists that I had end stage Liver disease. He referred me to a transplant surgeon. Before I could be evaluated for a liver transplant. I contracted E-Coli and my Meld core caped at 40. I was told I was in the 45 range. I was transferred to a transplant hospital were I was put on the transplant list and received a gift of life within three days. Just the other day I opened a letter from the hospital informing me my Meld score is 40 and I will not be leaving the hospital without a liver transplant.10 months late. GOD BLESS!

Jump to this post

I am happy to say that I am nine months post transplant with no complications. I had Asophagial varasies ten plus years ago and nearly bled out. I developed Acidies 7 months into apstaning from Alcohol consumption and learned during one of two parasyntethys hospitalizations that I had a meld score of 27. I was told by my liver specialists that I had end stage Liver disease. He referred me to a transplant surgeon. Before I could be evaluated for a liver transplant. I contracted E-Coli and my Meld core caped at 40. I was told I was in the 45 range. I was transferred to a transplant hospital were I was put on the transplant list and received a gift of life within three days. Just the other day I opened a letter from the hospital informing me my Meld score is 40 and I will not be leaving the hospital without a liver transplant.10 months late. GOD BLESS!

Jump to this post