Liver disease: Declining health

Hi @meredithdochniak1, let me see if I understand your concerns. Your father has declining health due to liver disease. His MELD score is 15, but his doctors say that it is too late for a liver transplant. Do I have that right so far?

What type of liver disease does he have? How old is your father?

To meredithdochniak1
I was told by my Tucson doctor that I had inoperable bile duct cancer and that I had 2 months to maybe 2 years to live and that I was too old (71) to get a transplant. That it would be chemo and radiation until I couldn't take it any more. My friends and the nurse practioner knew I was too vital and engaged in life to accept that diagnosis so I reached out to Mayo.
After 6 months of testing, chemo, radiation, stents and surgery to see if cancer had spread, I am now 73 and celebrating my 1st year transplant anniversary in 10 days.
A second opinion especially from Mayo can help you and your father see better into his future.
Barbara aka ajdo129

ajdo congratulations to you my friend how dare they try and give up on you💚 I hope that your post will help meridithdochniak with her father’s situation. I don’t quite understand everything that is going on w/her father.
Wishing the best she gets answers to help her father.

Hello.

Regarding your Dad, I am kind of confused why the hospital would say that his age is a problem for a liver transplant!.
However, please note that every state has its own ways of doing things, but in NC I dont see a problem albeit the MELD score is getting close to the required range.
The fluid draining process could be very inconvenient. One has to be in the hospital every two or three weeks how much fluid the liver generates.
I strongly suggest that you check another hospital or even in other states. I had mine done by the University of Virginia Hospital in Charlottsville. VA.
Please call them asap.

all the best

My husband is 71, his Meld score was 15. Here in California the 'team' declined to list him, stating he wasn't sick enough. His doctor told me they were wrong, and he was close to being too sick. He recommended we not listen to 'his' team and look out of state. So in January we packed up and flew to Mayo in AZ.
His wonderful doctor in California had kept him alive until Mayo could save it. Ten days after going to Mayo in AZ he had a liver transplant. Five days later he was out of the hospital and two months after back home. He has and continues to have issues, but not nearly as bad as we feared and Mayo is there for us all the way.
I urge you (and him) to call and talk with the liver transplant team at the Mayo Clinic campus nearest to you or in a state where you have family or friends to support you. Mayo will even advise you about local places (perhaps even on campus) where you can stay if assistance is needed.
Good luck and God bless.

I have been sober for 10 months. I have not had ANY alcohol during that time, My PETH tests have all came back negative for the transplant team, but this time it showed a 16! My primary prescribed my benzotatate for my cough, thinking it might be walking pnemonia. After 3 days of taking it, I ended up in the ER with a reaction. Turns out it contains alcohol, and shouldn't have been prescribed to me. It has been since Dec. 17 when I took it last - would that still show up on my test??? She then prescribed Mucinex which has no alcohol. Thoughts?

If you can document your attendance at substance abuse support meetings they will most likely understand the PETH mistake. intherooms dot com has dozens of weekly online support meetings and you can obtain documentation of attendance easily

I hope your hospital is better than mine at this. I stopped drinking in '18. I had cirrhosis. Sober ever since. I was put on the list in Jan 19. I was removed from this list immediately with a positive EtG and PETH lab in Jan 20. They told me to have weekly PETH and EtGs, and maybe they'd let me back in at some point. Sepsis led by my liver, and jacked up by a heart attack put me in ER in Nov 20, in a coma. Flat-lined the chopper ride to my hospital, 190 miles away. Brought back, and out of the coma weeks later, and nursed back to life with 3 months in ICU. Then, they decided to put me back on the list. They did call me, and my transplant was on Sep 21.
Be calm with them, they don't know you. If you and your PCP are good, he needs to send the hospital a written letter for documentation for the explanation. It may help the PCP would vouch for your sobriety. Lots of luck, I'm pulling for you.

Thank you all for your support! I have a starting point now.

The criteria and scores for transplant listing can be tricky. You have to be sick enough to warrant the transplant but not so sick that you won’t be able to survive it. It takes some diligence and providers that have your back to vouch for you.