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MIL Turned Down from Transplant
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..
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pedens20 @pedens20 I have not had that particular experience, but I am so sorry for what your mother-in-law and your family has been suffering and going through over the past few years. Hopefully someone else on Connect can give you some insight from their personal experience. Thoughts and prayers are with you. 🙏🏼
I would keep fighting Mayo’s denial, and be a squeaky wheel. Don’t ever stop trying! Mayo, is the best. But sometimes it takes talking to a different person. So keep talking and keep fighting! You can also contact UF Health and see if they would reevaluate.
Also get a hold of a dietitian to see if it can help her health! And keep stress low and pray, and God will give you the answers and the faith with direction! Clear your head and start over and keep fighting!
My thing is I’m not a doctor but she was put on an NG tube to assist with getting the nutrition up but it actually made her feel worse! They told the doctors this and they don’t really have an answer.
I want to scream you know this stuff doesn’t always follow the textbook you published so let’s think outside the box here.
They took the tube out and she feels and looks better than before.
PT visited two days ago and said she was in better shape than they expected.
The only thing that’s really happening has been the need for repeated thoracentesis and fluid building up in the abdomen.
She’s 75 and I guess I don’t understand are they just writing her off thinking age and likely progression coupled with any post op side effects and long term rejection risks ? They claim she could get an infection and that be it, they say anywhere from a few weeks to couple of months.
I want to say make it make sense because I don’t see it.
I’m a total realist with this I’m not on here grasping for a false hope I just truly don’t get it..
Well, they say at that age if you have other issues with your health, especially other organs, they most likely won’t do a transplant if there’s a low chance of survival. I’m 67 going on 68 in March and I’m having a problem with my main artery, going to my liver And I’m afraid because it could lead to a transplant if not handle properly. Nine years I’ve been going just fine and this pops up. This is a kind of problem that usually happens within three months on a transplant, not nine years later. And I still have no clue from the doctors what’s going on yet
Ever since Covid, the health system has gone to hell! It seems the best of doctors have left and most of the medical teams have broken up! And the cost of doing business has really scooped things up to. It’s a horrible time for health issues if you have them.
Just treasure every day you have and your loved ones and treasure the days she gave you! It really sucks. They won’t work with you but once again, get a second opinion. Where are you located? Maybe I can tell you some better place to go.
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1 ReactionAlso, you need to find out what her MELD level is! It might be something else in her health that’s causing her problems if that factor is not very high! The doctor should be able to tell you at least that much
Which mayo campus are you working with for her care.
Jax
@pedens20, I see that you have recently joined Connect, and I want to extend my welcome. I am so sorry to read that your MOL is now too sick to undergo a liver transplant surgery. This is very painful for me to read because this is the biggest fear that I encountered during my pre transplant period: Will I get transplant in time? Will I be strong enough to proceed to transplant surgery?
After 8 years pre transplant observation, and several months on the UNOS transplant waiting list, I had to be inactivated from the transplant list when bile duct cancer was suspected. I was inactivated until a cancer free diagnosis could be determined. My local team was unsuccessful in getting results. My local transplant doctor told me that they could not do anything for me. That is when they told my husband and me that they wanted a 2nd opinion and wanted to send me to Mayo. They offered us 2 choices: Go to Mayo for a possible treatment, ..or a short time in Hospice Care. Although my outcome was different, Please accept a virtual hug from me because I do know how you are feeling right now. ❤️
@peden20, How is your MOL dealing with this ?
Thanks she’s at peace with it. We all are…I just can’t help but think this isn’t time but we will value what we have and be grateful for any added time.
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4 ReactionsJust remember, the impossible doesn’t exist! Anything can happen!
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