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HELP...need to know if anyone else has had this happen

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Posted 1/30/2013 9:40 PM (GMT 0)
Hey guys...first time for me on here. My husband had a liver transplant in May 2012.  4 days post op he went catatonic...wouldn't speak...was expressionless....very blank...they said it was probably due to prograf (which they said was notorius for this) ??  They stopped that and put him on cyclosporine (gengraf)...which they explained was prograf's momma...he has done well physically....but several months ago started becoming anxious...angst...unsure about things...now he is VERY anxious...depressed....and just not like himself.  He said it feels similar to the way he felt in the hospital...but not of course to that extent.  Has anyone else experienced anything similar.  It didn't start until months post transplant...not sure if that is even it...Thanks for any information you have....

 

Posted 1/30/2013 10:11 PM (GMT 0)
LJJ,

Thanks for posting on the Hepatitis forum.

WE are patients and caregivers affected by liver disease.

Like you, my man had a liver transplant..his was May 2011.

I have been posting daily on this site since October 2010 and have not heard of this reaction to Prograf.

Mike has some kidney problems and they tried to switch him off Prograf to Rapamune and he had a horrible reaction to that and wound up in the hospital. He got giant mouth sores (Like extra tonsils...they were huge and white and really really were painful. He was sick with it almost 2 months nd he only took the Rapa a week.

Good that the Cyclosporin is working, but these mental/nervous changes can't be any fun at all. Is he still being treated at a major medical center. If not, get back to those guys.

What are they doing for him.

My partner, Mike has recently started taking an antidepressant as he has been grumpy...but nothing like what you are describing.

I'm so sorry this is happening to him.

Hopefully others will be along to post too.

Best, MamaLama
Posted 1/30/2013 10:41 PM (GMT 0)
Talk to your Transplant Coordinator about speaking to a Transplant Psychiatrist or sociologist.
Posted 1/31/2013 1:09 AM (GMT 0)
Wow, love getting feed back so quickly. We have talked to our transplant coordinator and he is seeing a psychiatrist and psychologist. They put him on buspar. They first put him on celexa ( the PCP) because when he noticed not feeling right they decided to try him on that. After several weeks he was worse and the feelings were more intense. Then they increased the dose and he practically went bonkers. They stopped the celexa and that is when they decided to try buspar. He said his mind is constantly racing and he can't really describe what it is. It's just this constant uncomfortable feeling. He worries about EVERYTHING. An unusual and unrealistic type of worrying. It's constant. He has never EVER had any issues like this, and nothing like this runs in his family. I am really worried about him and just grasping at any ideas. I just feel sure it's got to be related to the transplant or medications... It's like someone with PTSD. I have read that can happen to transplant patients but can't rally find anything tangible to help me cope or find some answers. He feels terribly guilty too because he has an excellent liver and is doing great physically so he wants to honor this wonderful gift of life... But this mental stuff is greatly affecting him... I am a nurse and am used to knowing the answers but this has me BAFFLED!
Posted 1/31/2013 2:07 AM (GMT 0)
Has he written a letter to the donor family? That helped me, even though they have yet to get it and read it. At first, I felt as if I didn't feel "enough" and it worried me. The transplant social worker told me that most people receiving a transplant have those feelings. After she said that, the worries went away. Many people have survivors guilt, which is a tough thing to get past.
Posted 1/31/2013 2:13 AM (GMT 0)
LJJ,

I was poking around and found some stuff. Here is a quote from one of those technical articles that are pretty hard to read:

This case highlights the need to remain cautious when psychiatric disorders occur in patients after liver transplantation. The diagnostic procedures should not be restricted to medical or neurological causes of psychosis alone but should also focus vascular complications related to liver transplantation.

This leaves me with the idea that psychiatric symptoms are NOT unusual after all...and maybe a vascular consult is in order...either with the liver or elsewhere!

Best to you both,

Carol

 

Posted 1/31/2013 5:10 PM (GMT 0)
Hello

My husband, Ron,  received his transplant - almost 2 years - ago (February 3, 2011).

Ron is very sensitive to medication.  The Prograf and then Cyclosporine caused all types of neurological issues (talking out of his head, shaking and tremors, he heard our dog running up and down the hospital hallways, told the doctor there was something sitting on his head - and he was convinced there was a family living in the large oak tree outside his hospital window).  Ron was 'glazed' over or asleep, or aggitated. 

The doctors called in a psychiatrist for a consult - nope - that wasn't it.

In the meantime, I was researching the side effects of Prograf and Cyclosporine (since they are related) - he seemed to exhibit every one!

about 1 month after the transplant, I was afraid to leave Ron at home while I worked (even though I was 7 miles away) - after many talks with the team pharmacist/doctors/surgeons Ron was placed on Rappamune.  It took about a week for the Cyclosporine to leave his system.  He stayed on Rappamune for approximately 6 months, then changed over to Prograf. 

I'm sure they can find the right drug - just continue to be the great advocate you are!

Pam and Ron

Posted 1/31/2013 5:15 PM (GMT 0)
Pam....good to hear your "voice." Is Ron doing well now? Thanks for posting in on this.....I'm sure there is a solution for LJJ's hubby. Carol
Posted 1/31/2013 6:58 PM (GMT 0)
Oh my goodness Pam that is music to my ears!! I just feel in my gut it's related to cyclosporine. We go back on Monday, 2/4 for a luver biopsy and office visit. I am hoping they will at least consider all this psych stuff is related to the cyclosporine. I certainly don't want him to have worse issues if they change him to something else... I will just get some more knowledge between now and Monday and pray on it. I absolutely LOVE THIS SITE. You guys are the best and it really helps to talk to others going through the same or similar issues !! Thanks guys any info or help educating us is appreciated...

Pam ( my name too Pam lol)
Posted 1/31/2013 8:59 PM (GMT 0)
Pam #2 smilewinkgrin I may be prejudiced, but I think this is the best site on the web. It's certainly the most active!

It does sound to me that your guy is having a drug reaction. I hope it all gets sorted out soon.

Hugs,
Connie
Posted 2/1/2013 1:32 AM (GMT 0)
Hey everyone - thank you for the well wishes. 

For those who don't know us - besides the liver transplant February 3, 2011, then bile duct repair surgery 10 days later, then diagnosed with a very rare deadly fungus in his lungs (mucormycosis).....he had a triple heart bypass November 15, 2012.  I have to say, he's had a great January..out and about, doing really well.

It's weird that I should come across this post about Prograf levels.........because Ron's Prograf levels have been fabulous, but the past couple of nights, I noticed him sleeping with his eyes half open - and he sews ('hand motions'); I thought he was just tired (he's been busy).  Today our transplant coordinator, Beth, called and left a message.........guess what?  Ron's Prograf level is very, very high.........that's why he's been acting strangely....and tonight he still is.  He's going to call Beth before taking his Prograf in the morning; she may have him taper or skip a dose.  When something like this happens - it always means more trips to the hospital for blood tests.

Posted 2/1/2013 1:33 AM (GMT 0)
From one Pam to another Pam - HELLO!
Posted 2/1/2013 8:19 PM (GMT 0)
I spoke to Ron's transplant coordinator and sure enough his Prograf level is high (usually runs 2-3) it's 13. It's an absortion issue - he's been at a perfect level since November - when it spiked some then.

Just wanted to give you guys an FYI - too much Prograf can equal very odd behavior.
Posted 2/1/2013 9:16 PM (GMT 0)
Hi rc,
Wondered how you guys were doing. Ron has been through a lot, but then, haven't we all. How soon before he gets out on the golf course. I remember that was all he talked about. And, how are you doing?
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