Fear of transplant denial because of psychiatric illness

Posted by ljeva1968 @ljeva1968, Oct 19, 2023

I’ve struggled with illness anxiety disorder, depression, ocd, for decades. My ptsd started after I was diagnosed with NASH F3. I have horrific night terrors without the meds. I’ve had to be hospitalized a couple of times. I have panic disorder and take high doses of clonazepam and ambien. Im trying hard to find other ways cope with the anxiety. I’m not suicidal but long ago in the midst of panics I’d say I wish I was never born. I work extensively with a therapist weekly. Still trying various meds for the ocd and depression etc. my fear since my diagnosis has been rooted in denial of transplant. Idk how to convince a transplant team that if I’m ever blessed with a new liver I will treat like a baby and do whatever it takes to survive and fight.

I need advice, help, and mostly HOPE!!!! Please help!!

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That gives me some hope. Are there any depression, anxiety meds that have helped you that aren’t controlled? I’ve tried so many. I’m trying to get my psychiatrist to give me Celexa which seemed to help a little long ago. I can’t recall why I got off, I think they wanted to try some new drug on me because I wasn’t 100%. For some reason he won’t rx Celexa so I’m going to ask my pcp. I’m desperate to help my mind. Congrats on your new kidney. I worked decades in dialysis so I’ve seen the other side of the road when it comes to CKD.


I’m new here. I’ve struggled with significant depression and health anxiety since is was diagnosed with Nash F3 and basically told I’d eventually need a transplant even if I lost weight. The doctor told me I had about 10 yrs and then “I really needed to start worrying “; he wasn’t very compassionate at all. I also have ptsd. I work extensively with a therapist and psychiatrist. It’s been almost 10 years and the worry about this is escalating. I’ve lost a ton of weight, eat healthy and exercise as able because I have other physical problems that affect my ability to exercise as much as I used to. Exercise is one of the best coping strategies I use so I hope my current health issue resolves so I can get in good work outs again. I work daily to strengthen coping mechanisms but I still need anxiety and sleep meds as I otherwise have nightmares and horrific night terrors. I take clonazepam and ambien. My goal is to reduce my need for these meds. My question is, did anyone experience mental illness as a barrier to getting approval? Once transplanted, do they allow you to take anxiety/ sleep meds as living with a transplant is very challenging. Any advice is appreciated.

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Hello Friend,
I understand your concerns. I remember, when I was screening for a kidney transplant, feeling like I had to prove I was healthy, physically and mentally, right at the time I felt my weakest on all fronts. I was diagnosed with PKD, 20 years before kidney failure, and am familiar with the anxiety of anticipating an organ transplant, decades before it happens. I was given a live transplant 3 and 1/2 years ago, and feel soooo much better:)

I am glad to hear you are exercising, eating healthy, and at a healthier weight. This indicates you are willing to take care of your gift of life - before and after transplant. And yes, exercise is a great coping strategy, as it allows you to take active steps of self-care, when dealing with a disease, over which you have little control. I found yoga and meditation helpful.

I have not taken clonazepam for anxiety, but I have taken ambien for most of my adulthood, and I have continued taking it after my kidney transplant. You will not be allowed to take it, while you're on post-surgery pain meds, because that can be lethal. However, the pain meds keep you pretty relaxed and I took them for less than a week. I receive my ambien prescription from my general practitioner, not my post-transplant doctor. However, all doctors know what I take. Ambien is metabolized by the liver, not the kidney, if that is helpful.

I believe the psychiatric evaluation, is basically screening to insure you are someone that will take care of someone's gift of an organ. Are you mentally capable of taking the correct meds, at the correct times? Are you faithful about self-care? Would you do anything to jeopardize your transplant, due to depression or despair? Each transplant facility is concerned about successful long-term transplants, as they are judged by their statistics. They need to keep their numbers up, which means there is a bit of self-marketing on the part of patients. You need to let them know, you will be one of their successful transplants:) And it sounds like the healthy life-style changes you have made, and maintained, are a great indicator of your commitment to health. I would lead with that, and keep language to anxiety issues, as opposed to mental illness.

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