The decision to be on a liver transplant list or not.

@ran73 I think I understand your wonderings- given the age and health of you and husband, what choices give you the best quality of life? I had a liver transplant 2 years ago, age 54. I had a form of autoimmune liver disease that seemed suddenly to be affecting me horribly so there was no question that I needed a transplant. I had stage 4 cirrhosis and my MELD was a 32. I know that people with far lower MELD score can feel terrible but sounds like you don’t.

One thing I notice about my stage 4 cirrhosis self was that in retrospect I was far more jaundiced and waterlogged than I realized, and also my brain was much more foggy when I was sick than I admitted to myself. And my hands were shaky at baseline which bothered me but again, I really minimized some of my worse symptoms.

That’s something to ask yourself- I have noticed increasingly that we live in a society that likes us to be strong fighters for our health. When I think back, I sometimes bought into that notion, getting fawned over by others for being “strong”, “inspiring”.

The fact that you’ve been sober for over 2 years, you’ve treated your Hep c, are eating well and exercising- all of this will serve you well regardless of your transplant status. I honor you for confiding in your PCP which is so hard to do. I hope you’ll share more and tell us how you fare in your journey for health. Kate

Thank you Kate.
I appreciate the information and advise to be vigilant about symptoms. I'm very independent and can't stand to be babied as my overly protective husband will testify.
Going from compensated to decompensated cirrhosis would change the conversation, although I would have an ethical dilemma being the recipient of a healthy liver at this age when it would give many more years of life to someone younger.
Hopefully this liver will hang on as long as my hepatologist believes it will so that I'm never faced with that decision.
The surgeon is naturally recommending transplant, because that's the world he lives in.
I'm grateful that , for now, I have a choice. Many, like yourself didn't.
Randi

Hi Randi,
My husband had a liver transplant 2 weeks ago. He had stage 4 liver cirrhosis. He didn't have a choice and we thank God every day they found a perfect match. He is doing well. It's not easy to be put on "the list". Lots of testing. When you are presented with an offer of an organ, you have the opportunity to say "no thank you". At least you will be on the list, if you decide you want the transplant. Sometimes, it takes months to be called, so you will be ahead of the game, if you chose to go the surgery route. I know first hand how hard it is. I am so glad you are feeling well. Please do not deny yourself a new healthy organ because you feel someone younger should have it. Everything happens for a reason and whoever receives the organ is the person who should have it. I wish you well.
Lori

Lori,
Congratulations to you and your husband on a successful transplant and the journey of recovery ahead.
When the surgeon who did my tumor ablation 3 weeks ago strongly suggested transplant I began researching and was astounded at the scope of it all, without even knowing the pre-op testing, after care needs, possible side effects, lifetime adjustment to anti rejection meds and financial requirements, will be. What an undertaking and commitment for both spouses that as you said; you do because you had no other option and are grateful for the gift of life.
In my case, it's odd to have a transplant surgeon strongly recommending that route based on his assumption that my liver will eventually fail while my hepatologist, who I respect and trust, supports a more conservative plan of continuing all I'm doing lifestyle wise along with CT angiogram every 3 months, labs and being aware of any change in symptoms.
I admire what transplant families have to deal with and with gratitude.
I pray that it will never be asked of my husband.
For years we've had to grieve the loss of our children. I have deep remorse for now subjecting him to this.
I'm highly motivated to stick with a super healthy, clean diet, exercise daily even if I'm feeling lazy and say thank you for every moment that I continue to feel so good. Being 73 is much to be grateful for.
So many folks haven't had that.
I'll continue to read other's experiences here, in the event that transplant becomes unavoidable. It's quite an education and such generosity in sharing.
The very best to you and your husband while he heals.
Randi

How sick were you when you qualified for a transplant? Were you still able to work? My MELD is 7 and normal bloodwork. I am concerned about “too sick for life but not sick enough for a transplant.” Did you pursue living donor at any point? In your research, what were the top liver hospitals?
Kind regards

Hi @hope25, I'm tagging @katebw to make sure she sees your questions. I also think that @amyintucson @gaylea1 and @athenalee might have experiences to share about “too sick for life but not sick enough for a transplant.”

You might also be interested in this related discussion:
- It's not all about the MELD Score
https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/

Are you on a wait list?

@hope25 my apologies- I didn’t realize you were asking me. By the time I understood I had liver disease my MELD was 32 and would only fluctuate down to 28 here and there. So my needing a liver transplant was a clear cut thing and I didn’t consider a living donor as there was no time to do so.

I have learned from others who have had a slower developing liver disease who are seeking a living donor as they are feeling very sick but in the eyes of the National Transplant List system they cannot be listed in the traditional way. I’ve heard that Mayo, University Hospital in San Antonio, U Pittsburgh and MGH Boston all have specialized living donor programs for liver transplant.

My transplant was through MassGeneral Hospital in Boston as I live in western MA. They are phenomenal. I didn’t scout around as I was so sick so suddenly but nevertheless I was lucky that they were my default transplant service.

Prior to my diagnosis, in retrospect for about 2 years I was not feeling well- tired all the time. I worked right up until a driving catastrophe led to my diagnosis but in retrospect I wasn’t as mentally sharp and lacked necessary energy to do my job well for those two years. Liver disease can affect one’s cognition I think in large part because there are higher levels of ammonia in one’s brain. It’s also fatiguing and muscle wasting so important to be as active as possible while ill- as hard as that is. Best of luck to you on your journey, I think this is a great way to find support.

“too sick for life but not sick enough for a transplant.”
Boy did this comment bring me back to my 10 years of dealing with my liver issues. I am almost 5 years post transplant (12/2018). Searching for a living donor was not on my radar then but I realize it is a possibility. I comforted myself that if I was not sick enough for a transplant then someone sicker than me was offered the life saving opportunity.

The care of my local doctors and the Mayo team kept me sane while I waited. Having a good support system - spouse, family and friends - was critical.

Thank you for your insight. Were you able to work, drive and complete your activities of daily living during these 10 years pre-transplant? I have so many concerns about the trajectory of this disease. Wondering if I need 3rd opinion when my MELD is so low.

No I am not on a wait list. I calculated my MELD at a “7.” I was told only a MELD of “15” is considered for a living donor. I was told that I have “compensated” disease despite “venous congestion” on gastric biopsy. This points to portal hypertensive gastropathy which is not being acknowledged as “decompensation.” I was told that I do not have portal hypertension, but the above suggests that I do. I wonder if I should be started on Carvedilol. Any thoughts?