1. < Transplants

HELP! Husband's transplant going down hill

Posted by chantel @chantel, Jan 30, 2021

Hi everyone and congratulations on YOUR transplant. I got on this site years ago was was too IGNORANT to figure out I see replies thru emails. Now I know.
My husband had his liver transplant 9/10/2014 and the FIRST YEAR WAS GREAT!!!
These last 5 have been pure HELL!!!
NO drs listen. His labs are AWFUL.
His kidneys are completely shot now😥
He's gotten type 2 diabetes cuz of the transplant.
Why don't these drs help him? It's like they just gave up. He soils himself now.
Personality has COMPLETELY CHANGED
The diabetes is really hurting him too.
How do you get a dr to see how AWFUL your labs are and HELP HIM?
It's like they're just waiting for him to die!
Best part of all?
He got this transplant at 34 years of age.
He's 40 now.
Unbelievable
He's on tachro
Prednisone (whenever he decides to take it) makes him very mean
Myclocenaphate
These are his liver meds.
Any suggestions?
Thank you

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chantel | @chantel | Feb 1, 2021
In reply to @contentandwell "Hi @chantel I too am a post-liver transplant patient. I had mine at Mass General in..." + (show)
@contentandwell

Hi @chantel I too am a post-liver transplant patient. I had mine at Mass General in September 2016. Hopkins is definitely one of the top four hospitals in the country along with Mayo, Mass General, and Cleveland Clinic but even the best hospitals can occasionally have doctors and/or nurses who are not up to their standards. Hopefully those people won't be there for long.

I agree with @athenalee, you really do need to keep track of your husband taking his medications, it's in his best interest. I have heard that many people struggle with depression when they are post-transplant so his transplant team should really be more understanding. If you are going to a new transplant center, may I suggest that you check their rating on the SRTR.org database? I hope things will be smoother for him and for you at a new facility.
JK

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Thank you so much. What is SRTR?

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1 reply
JK | @contentandwell | Feb 1, 2021
In reply to @chantel "Thank you so much. What is SRTR?" + (show)
@chantel

Thank you so much. What is SRTR?

Jump to this post

@chantel SRTR stands for Scientific Registry of Transplant Recipients. They rate transplant hospitals.

Here is a link to the liver transplant hospitals.
https://www.srtr.org/transplant-centers/?organ=liver&recipientType=adult&query=
I think at this point you really want a hospital that is good after transplant. Those are the ones I would think would be most valuable to you since he is post-transplant.
JK

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chantel | @chantel | Feb 1, 2021

Thank you so very much for this information. You are AWESOME❤️❤️❤️

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 19, 2021
In reply to @chantel "Thank you so very much for this information. You are AWESOME❤️❤️❤️" + (show)
@chantel

Thank you so very much for this information. You are AWESOME❤️❤️❤️

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@chantel, I have had you and your husband on my mind. So consider this a virtual, "Thinking of You", card.

What has been going on since you last posted?
Have you found that the new doctor has been helpful to provide the care and direction that your husband will benefit from?

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pinkyj | @pinkyj | Feb 23, 2021

I am sorry to hear of your husband's poor health. I had a liver transplant in August 2020. I had no known allergies, but two medications gave me a lot of trouble: TACROLIMUS made it hard for me to talk and think straight, I had a seizure and hallucinations. This happened after being out of the hospital only a couple of days. I now take CYCLOSPORINE (since mid-August 2020) with no bad effects so far. The other medication is BACTRIM. It apparently caused acute kidney failure and I ended up in the hospital for another 5 days. That was about 3 months post transplant surgery. BACTRIM was replaced with three PANTAMADINE respiratory treatments 30 days apart - last one was a few weeks ago.
Have you suggested to his docs a replacement medication(s)?
I will keep your family in my prayers.
Pinky Johnson

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 25, 2021
In reply to @pinkyj "I am sorry to hear of your husband's poor health. I had a liver transplant in..." + (show)
@pinkyj

I am sorry to hear of your husband's poor health. I had a liver transplant in August 2020. I had no known allergies, but two medications gave me a lot of trouble: TACROLIMUS made it hard for me to talk and think straight, I had a seizure and hallucinations. This happened after being out of the hospital only a couple of days. I now take CYCLOSPORINE (since mid-August 2020) with no bad effects so far. The other medication is BACTRIM. It apparently caused acute kidney failure and I ended up in the hospital for another 5 days. That was about 3 months post transplant surgery. BACTRIM was replaced with three PANTAMADINE respiratory treatments 30 days apart - last one was a few weeks ago.
Have you suggested to his docs a replacement medication(s)?
I will keep your family in my prayers.
Pinky Johnson

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@pinkyj, I am a transplant recipient, and have been on tacrolimus for 12 years with no problems. I appreciate that you shared your experience. That must have been frightening for you and for your loved ones. I'm so happy that your transplant team found a solution as well as a medication that works for you!
Have you had a bad reactions to medications in the past? Or was this a complete surprise? How about the kidney Did it recover?

Oh, before I sign off, I want to say Welcome to Connect. How are you doing as you approach your 6 month anniversary?

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