HELP! Husband's transplant going down hill

Posted by chantel @chantel, Jan 30 12:08pm

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

Hi @chantel and welcome to Mayo Clinic Connect. Your husband is having a hard time and he is only 40 yrs old. I am sorry to hear this. Is the physician he is seeing his general practitioner or his transplant doctor?

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Hi, @chantel Welcome to Connect and the Transplants discussions.
I am truly sorry for what your husband is going through, and you too of course. If his transplant hospital is not being helpful I think you need to transfer his care to a different transplant hospital. I think most transplant centers are very good but of course, there are some that are less so than others. It really sounds as if he needs some attention and they are obviously not giving him any. At his age he hopefully has many years left and living them in misery is not something anyone wants.

Is there another transplant center within a distance where he could go? You and he may have to go a distance but if things are that bad it could be very worth it. I hope you consider this and let us know how he and you are doing.
JK

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Thank you so much for responding. Here's the kicker. He got his transplant from JOHNS HOPKINS!! Y'know? The best in the world!! I did take hi to another hospital. There's one thing I didn't tell all of you. When things started going downhill, my hubby got severely depressed. Be stopped taking his meds for around2 weeks. He's the one that was upfront and honest about it. They did t know. His labs NEVER CHANGED!!! You'd think they have so e type of psychological help after a transplant. Nope. Anyway, he's looked at as being "non compliant" now. I think that's why they stopped caring. I think it's dead wrong. He was depressed and sick. I hope and pray to GOD somebody will eventually listen. Thank you ❤️❤️

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@amandaburnett

Hi @chantel and welcome to Mayo Clinic Connect. Your husband is having a hard time and he is only 40 yrs old. I am sorry to hear this. Is the physician he is seeing his general practitioner or his transplant doctor?

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His transplant dr and I don't like her. I tried to get him another at the same facility and something happened. I can't remember now. It's ALWAYS SOMETHING tho 😥
I don't think he should be living in such he'll either at only 40, but what ELSE can I do? I'm really not one to mess with either. Hopkins newme VERY WELL😂😂

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@chantel

Thank you so much for responding. Here's the kicker. He got his transplant from JOHNS HOPKINS!! Y'know? The best in the world!! I did take hi to another hospital. There's one thing I didn't tell all of you. When things started going downhill, my hubby got severely depressed. Be stopped taking his meds for around2 weeks. He's the one that was upfront and honest about it. They did t know. His labs NEVER CHANGED!!! You'd think they have so e type of psychological help after a transplant. Nope. Anyway, he's looked at as being "non compliant" now. I think that's why they stopped caring. I think it's dead wrong. He was depressed and sick. I hope and pray to GOD somebody will eventually listen. Thank you ❤️❤️

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I’m sorry your husband is struggling. It’s fortunate he has your support! Please make sure he takes all of his meds as directed. Organ rejection or complications can occur at anytime. If you cannot change hospitals, you might discuss your experience with the hospital’s patient advocate. When I was having issues while in the hospital, I discussed my concerns with the patient advocate and they were helpful.

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@chantel

His transplant dr and I don't like her. I tried to get him another at the same facility and something happened. I can't remember now. It's ALWAYS SOMETHING tho 😥
I don't think he should be living in such he'll either at only 40, but what ELSE can I do? I'm really not one to mess with either. Hopkins newme VERY WELL😂😂

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@chantel, I am happy to see that you are getting some great ideas from our members as you look to help your husband move ahead toward an improved transplant life.
I am a transplant recipient. I have a son who is 40, so I am speaking from the perspective of a mother. At 40, your 'young' husband has the opportunity to do everything in his power to turn his life around, or at the very least slow the downward slide. I believe that it has to be a commitment on his part to enlist the help/partnership of his medical team. Do you think that he can put the past in the past? Does he want to make his life better? Have you shared any of the member suggestions with him?

What about you? I honestly believe that the spouse/caregiver can see and feel things that, we, the patients do not see and feel. It can be stressful and a burden to the spouse's own health and emotional wellbeing. That is my concern for you. Do you have someone in your circle of friends/relatives that you can depend on for support during these difficult times?

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You are too sweet. I always tell my husband idk how I haven't STROKED OUT YET!!! TBH? I feel like he's kind of given up with how things have gone for him. We just met a new primary Dr last week and SHE WAS GREAT. She actually told him to not go with hopkins anymore. I really feel she might just be the HOPE we've been seeking. Everybody else told us we HAD to stay with Hopkins cuz that's where his transplant was given. I have a WONDERFUL support team, but I felt like I needed you guys in my life too.
Thank you so very much!!! ❤️❤️❤️

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@chantel

You are too sweet. I always tell my husband idk how I haven't STROKED OUT YET!!! TBH? I feel like he's kind of given up with how things have gone for him. We just met a new primary Dr last week and SHE WAS GREAT. She actually told him to not go with hopkins anymore. I really feel she might just be the HOPE we've been seeking. Everybody else told us we HAD to stay with Hopkins cuz that's where his transplant was given. I have a WONDERFUL support team, but I felt like I needed you guys in my life too.
Thank you so very much!!! ❤️❤️❤️

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@chantel. While on my own transplant journey, one of most inspirational quotes was whispered in my ear by a nurse: “The only thing stronger than fear is hope!” That has propelled me on some of the darkest days.
In the previous comment, Rosemary expressed the same concerns I had after reading your initial post. Your husband has to be willing to make the commitment to aid in his recovery. Maybe with this new doctor there is that beacon of hope which will help boost his morale and help get you both on track to a healthier and happier life ahead. I can feel your sense of relief of having a new direction to turn. Is your husband feeling positive about this new physician as well?

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@chantel

Thank you so much for responding. Here's the kicker. He got his transplant from JOHNS HOPKINS!! Y'know? The best in the world!! I did take hi to another hospital. There's one thing I didn't tell all of you. When things started going downhill, my hubby got severely depressed. Be stopped taking his meds for around2 weeks. He's the one that was upfront and honest about it. They did t know. His labs NEVER CHANGED!!! You'd think they have so e type of psychological help after a transplant. Nope. Anyway, he's looked at as being "non compliant" now. I think that's why they stopped caring. I think it's dead wrong. He was depressed and sick. I hope and pray to GOD somebody will eventually listen. Thank you ❤️❤️

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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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@loribmt

@chantel. While on my own transplant journey, one of most inspirational quotes was whispered in my ear by a nurse: “The only thing stronger than fear is hope!” That has propelled me on some of the darkest days.
In the previous comment, Rosemary expressed the same concerns I had after reading your initial post. Your husband has to be willing to make the commitment to aid in his recovery. Maybe with this new doctor there is that beacon of hope which will help boost his morale and help get you both on track to a healthier and happier life ahead. I can feel your sense of relief of having a new direction to turn. Is your husband feeling positive about this new physician as well?

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Yes!!! He is!! Thank GOD!!! Thank you so much for your reply. It means SOOOO MUCH all of you trying to help me. I have support, but I feel MORE SUPPORTED NOW❤️❤️❤️

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@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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@chantel

Thank you so much. What is SRTR?

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

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@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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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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