Has anyone noticed personality changes in kidney transplant patients?

@pastahdoe53 Welcome to Mayo Clinic Connect! You’ve asked a pretty common question, but I don’t know if there is a common answer. Several people before you have asked the same question. You might also be interested in the Transplants support group https://connect.mayoclinic.org/group/transplants/

This must be so difficult to deal with. You're not alone. @footballmum started a similar discussion here:
- Anyone experience personality change post solid organ transplant?https://connect.mayoclinic.org/discussion/personality-change/

@pastahdoe53, may I ask in what ways has your husband changed? Does he notice the changes too?

My spouse of over 40 yrs never had dialysis but received his kidney transplant over 7 yrs ago. THe organ functions , though it took 14 months at the beginning for that to occur. The immunosuppressants he takes 3 times a day have many negative side effects. His nephrologists realize that many people experience such things. I've told his doctors that often I feel his personality is not the person I married any more. Alot of his behaviors are opposite of his normal traits. I am not surprised by what you wrote. What are some things you are noticing different? My spouse admits he feels different. I look forward to your responding. It is hard to move onward in our relationship when learning such off things happen. I only heard the doctors talk about rejection of organ and not much else as we waited for a kidney. I wish we knew all that 'could' happen being on these meds. The man I married is gone and I'm still coping with that. I love him. This is the most challenging time in our entire long marriage. I feel betrayed by the transplant clinic (not Mayo) that were not transparent on the possible side effects of taking these strong medications. Please know you are not alone. Thanks for sharing all this.

@dotygl This is an interesting question, and I have done some thinking about my own experience with my transplant. I am not aware of any changes other than feeling more emotional and more appreciative for my "new life" of 17 years. I have learned to be more aware and careful of my surroundings which means being selective of where/when I go somewhere. I accept that it is OK to say "no" if I am unsure about something, and always include my husband in my decisions. He is a wonderful support and has been with me thtoughout my entire transplant process. Together we make decisions, and he gives my health needs priority. I also have made new friends since transplant who actually "get it" and support my safe luncheons and activity dates! Today, I'm going to my quilting group chatiry sewing day, and will sit where I feel safe, but also be alert if someone appears to be sick - and respectfully make my exit.
As the patient, I need to get out on my own and participate in my activitiea. And my husband get to have a free day at home! Togetherness is good, but does have its limits!
Have you considered "fresh air" for you and/or your husband? for example:
Does your husband have any activities that he enjoys? Is he able to participate in outside the home events?
What about you? What do you enjoy doing? What are some things that you used to enjoy that you might resume doing?
Try doing something nice for yourself today!

I think it is probably due to the adrenal glands. They produce hormones and we all know that when hormones fluctuate what happens. The kidneys are closely tied to adrenal gland hormone regulation, so anything going on with the kidneys will affect adrenal function and the hormones they produce.

Adrenal glands produce adrenaline, hence name of the gland. That is the flight or flight hormone. So one might see changes in personality along that order: nervousness, agitation, depression, anxiety...aggression..

Just a guess. Am in the medical profession.

@dotygl My husband received a kidney transplant October 2016. At that time we were still in the beginning of our relationship, so I cannot tell you what changes he might have gone though mentally of emotionally.

Any medications we take can have a variety of effects on us. I'm really not sure that is something the transplant doctors have a handle on, but the social worker from the transplant team may be able to give you some direction? And don't forget to factor in if your husband is on medications for other health concerns, as the combination might have less-than-stellar side effects.

Don't be afraid to consider couples counseling!
Ginger

@gingerw
Thanks for writing. I wish my spouse was open to any kind of counseling alone or with me but he is not at all. That is very very clear from my talking to him about it. I went into counseling for myself during Covid19 for over two years, but it did very little to help me. I am an extrovert super involved in many groups involving hobbies, museums, quilting and more and it all ended. I went into my first in life depression over 6 yrs ago and it is with me like a shadow due to still living isolated. Friends and family have departed support also. I'm out of ideas. The transplant team doctor we saw had come from John Hopkins Medical beforehand and she had heard of many same/similar issues my spouse has been having In patients there. What was sad though was she had no suggestions to improve my spouse' low quality of life all this time. I feel no one can relate to all this. I appreciate your writing. I think most people in a similar situation like us stay silent.

@dotygl Perhaps if you can return to counseling even if it is by yourself, for yourself? In my opinion, you owe that to yourself.

Over the last 5 years, my health has changed pretty dramatically. This we had planned to do as a couple, and I had planned to do solely, have been nixed. I can no longer physically or emotionally do what was on the list of "want to/gotta do this..." How does this change the relationship with my husband? He continues to go off on his solo trips by motorhome or motorcycle. He continues to head off in the morning sometimes, returning late in the day, doing errands and whatnot then taking his time coming home. I have only asked him once to accompany me to my medical appointments; he does not volunteer to go.

How do I cope? By journaling, seeking counseling for myself [like your husband, he won't consider it], being involved in what things I can do, that have meaning for me. We live pretty rural.
Ginger