MIL Turned Down from Transplant

Posted by pedens20 @pedens20, Oct 3 5:34am

My mother in law who just recently turned 75 was informed by Mayo today she’s too sick to receive a liver transplant and is being referred to the palliative care and hospice group. Her MELD score is not high enough to be listed.

I cannot help but feel that this was the end result of analysis paralysis by Mayo. She has been battling with this for 4 years and only really started in depth with them within the last year or two.

Throughout all of this there have been numerous tests and retests and a lot of hurry up and wait. Earlier this spring we were told her doctor was going to present her case to the committee. Then it came back they asked for more tests.

At one point there was communication that she was listed then that turned out to be incorrect and she needed to do more things to get listed.

There’s just been a lot of back and forth and a few of these doctors are to be honest in need of an attitude adjustment but I digress.

Has anyone else been denied a transplant and it turn out Mayo was wrong?

I’m willing to accept this I mean it’s been a long term chronic condition but I cannot help feeling somewhere along the way these people either dropped the ball or no one wants to make a decision and also take ownership of the situation and here we are.

Has anybody else experienced this? These people are human I get it but maybe I’m just missing something..

Interested in more discussions like this? Go to the Transplants Support Group.

paragem | @paragem | Oct 5 8:53am

I can’t speak directly about your MIL’s situation but I’m so sorry that she and the family are facing this. I can speak about my experience however and hope that maybe it sheds some light.

I had a kidney transplant over 2 years ago at Mayo Phoenix. I was seeing a Mayo nephrologist who referred me for transplant. It was nearly a year before I had my first appt. toward the transplant. In the next 4-5 months, I had nearly 50 separate appts. in order to “qualify” for the transplant. That included interviews, lab work, provider visits, tests, and a few minor procedures. I was in excellent health at the time, other than the kidney disease and high blood pressure (controlled). Thorough does not begin to describe the process; it was exhausting.

I was lucky to have a live donor so the surgery was relatively quick once I was approved. Immediate recovery (healing of incision, improving pain levels, ability to get around and do things) was normal for me, about 6-8 weeks. But since then, it has been very difficult - side effects from the transplant drugs are worse for me than dealing with kidney disease. I have not rebounded the way I hoped. I do have a perfectly functioning new kidney but there are many days when a bit of regret over the transplant creeps in.

I was 66 at the time of surgery, 68 now. Although I still work full time and have a relatively normal life, it has been tough.

If your MIL is going into this with some health problems, the doctors will be very cautious. It’s not that they don’t want her to have the transplant but, crass as it sounds, with the shortage of organs, they don’t want to transplant a healthy organ into someone who may not be successful at overcoming related or other health problems. And there is the recovery - it takes time and strength. If she doesn’t have a live donor, then she will have months, possibly longer to just wait for a match. There are so many variables for them to consider.

I agree that it sounds like they should be moving faster. You should have a coordinator assigned to her that you can talk to. Mention specific examples where follow up was promised but has not occurred. Or testing that was ordered but not performed. If they deem her too sick (or something else -many people are denied transplants every day, sometimes for reasons that you wouldn’t think of), then a follow up with her regular docs to get her to a more stable condition would be a good next step.

It’s all very complicated and I’m sure she is very grateful to have you advocating for her. And, although I believe Mayo is the best place for a transplant, there are other facilities that might have different priorities and where she may fit better into their protocols. Best of luck!

mkh | @mkhogan | Oct 5 9:51am

In reply to @pedens20 "Jax" + (show)

Prayers and healing thoughts are with you. Yes, things are often not impossible. Your attitude if enjoying each day is wonderful and you can still keep hope

apachanga1 | @apachanga1 | Oct 5 10:34am

In reply to @rosemarya "@pedens20, I see that you have recently joined Connect, and I want to extend my welcome...." + (show)

Always get a second opinion! And Mayo, is a great place to go! Just remember these doctors are just human! And they seem to be more overwhelmed now since Covid. So it depends on what day you catch them on and how much they really wanna work on you or help you. Once again they’re just human.

I’ve had a couple of scars before and it turned out to be nothing. I’m hoping this is going to be the same thing. Just got CT scan back. Need to have doctor reevaluate because it may have been a false reading on the first abdominal ultrasound scan. Plus, I have a second doctor standing by with their opinion.
They call us patients, or I believe, the reason is because we just have to be patient with how the medical field works nowadays!

Rosemary, Volunteer Mentor | @rosemarya | Oct 5 11:22am

In reply to @apachanga1 "Always get a second opinion! And Mayo, is a great place to go! Just remember these..." + (show)

hi, @apachanga1 =, I think you meant to respond to my response in
- Liver Transplant 9 years ago - https://connect.mayoclinic.org/discussion/liver-transplant-nine-years-ago-male-restricted-main-artery/?pg=1#comment-1151892
- but that is ok because I got the message anyway!
I am happy that you are getting a reevaluation of the new CT. I hope all goe s and that you and doctors will decide about possible treatment.
I commend you for being proactive and advocating for yourself and communicating with your doctors. We, the patients, and the doctors do best when we work together.

cromme50 | @cromme50 | Oct 5 11:44am

What puzzles me is that your MIL is too sick for a transplant but her MELD is not high enough to qualify for a transplant. Is she too sick because of her liver or does she have co-morbidities such as heart, kidney, lungs, diabetes etc? A transplant is a shock to the body and a co-morbidity can precipitate the downfall of a pre-existing
condition and be fatal. What is the root cause for her liver condition?