Personality Change of Kidney Transplant Patient

Posted by cseymour @cseymour, May 13, 2018

I am at a loss. My sweet husband, who is normally very kind and gentle, has become cynical, rude and just downright hard to be around. He has ESRD, been on dialysis, and received a transplant in September 2017. He has a complex case and is facing possible loss of transplant. I realize he has been through so much and I want to keep being a supportive caregiver. However, there is a limit to what one can take. Any suggestions or strategies on dealing with someone who appears to be mad at the world?

@delba

My husband transplanted 7/1/18 and I don’t even know him anymore. It’s like someone else is living in his body. I’m thinking it’s the anti rejection drugs. He’s on a high dose.

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So glad to find your post. My husband completely changed after his transplant and left me not quite 2 years later. It’s heartbreaking.

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@lulujj777

I can completely emphasize with your situation which I certainly hope has very much improved or resolved. I'm am also at my witts end with my husband's change in personality following his kidney transplant 7 weeks ago. I have tried everything I can think of, including pastoral counsel. He continues to go into fits of rage, cursing me, putting me down and saying all our problems are my fault. I am the one who reports this to his doctors & social worker but he will not listen to their suggestions. Do you have any suggestions based on your experience? Thank you for sharing your story.

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@lulujj777
Hi, I am familiar with two cases of personality changes such as are being described here. One was in myself after receiving massive steroid infusions after diagnosis of MS in 1999. In the months subsequent to this my personality changed to a degree which I didn't notice at all but my wife noticed clearly. I became different from my normal kind caring self. At first she came to wonder whether I was having an affair (which I was not and never have) but eventually through research she found out that steroids can cause significant personality changes in a person. Mine went away after a few months. The other case was Bill, our one time next-door-neighbor who had had heart surgery and, according to Barb, his wife, an ER nurse, one or more of the heart medications he received changed him from a very sweet a wonderful gentleman into an angry, mean and abusive person. Barb was beside herself in how he treated her, even as she was caring for him while he remained sick. In a few months Bill died of his ongoing heart issues. I do think that certain medications, and steroids for sure, can cause this type of personality change. If I were you I would investigate all medications your husband is receiving, or has received (in my case it was 2 months after I'd gotten the steroids), for this possible side effect. BTW, I also just read that personality changes can also be caused by anesthesia. Best, Hank

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I can completely emphasize with your situation which I certainly hope has very much improved or resolved. I'm am also at my witts end with my husband's change in personality following his kidney transplant 7 weeks ago. I have tried everything I can think of, including pastoral counsel. He continues to go into fits of rage, cursing me, putting me down and saying all our problems are my fault. I am the one who reports this to his doctors & social worker but he will not listen to their suggestions. Do you have any suggestions based on your experience? Thank you for sharing your story.

Liked by Hank

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@cindyt63

Yes, I have talked with his doctors about his changes. I have told them he is depressed. I have told him he is depressed and we have discussed the signs/symptoms of depression. I have serious depression and know it well. His PCP asked him if he felt down sometimes to which hubby affirmed that he did. The doctor's response was, "Well, we all get that way from time to time. It comes with getting older." When hubby told me this I nearly exploded but didn't as he trusts this doctor and my speaking against him doesn't help matters. I on the other hand don't trust this doctor as far as I can throw him.

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Hello @cindyt63,

I'm sorry to hear that your husband's PCP was not more proactive when your husband mentioned his depression.

Have you considered a second opinion? It might be helpful so that both you and your husband could have a better quality of life.

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@hopeful33250

Hello @cindyt63,

Thanks for sharing the story about your husband's personality changes as a result of his surgeries. Have you discussed any of these changes with his physician? It could be that he might be dealing with some low-grade depression. When patients spend time in the ICU, Post-Intensive Care Syndrome often results. You might want to see the discussion on Connect about that topic. Here is the link,
https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/?pg=35#comment-313366
You are correct when you say, "It is up to us to do our research and learn as much as we can." It is important for every patient and their family members to do as much research as possible regarding their health conditions. In this way, all become better health-care consumers and take care of ourselves better.

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Yes, I have talked with his doctors about his changes. I have told them he is depressed. I have told him he is depressed and we have discussed the signs/symptoms of depression. I have serious depression and know it well. His PCP asked him if he felt down sometimes to which hubby affirmed that he did. The doctor's response was, "Well, we all get that way from time to time. It comes with getting older." When hubby told me this I nearly exploded but didn't as he trusts this doctor and my speaking against him doesn't help matters. I on the other hand don't trust this doctor as far as I can throw him.

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@cindyt63

My nephew has now had his fourth kidney transplant. His personality changed with each one. The first donor was a family member and had the least change. The others were cadaver kidneys. The third donor had high blood pressure and took medication for it. My nephew had to take BP medication because the kidney was accustomed to it. The doctors are all aware of these changes in the recipients but the information is not shared with the family or general public. It is up to us to do our research and learn as much as we can.

I had always heard that patients who undergo open heart surgery experience a change in their personality as well. I think it is more than just those who have open heart surgery that are affected. My husband has had angioplasty to insert two stents in a blocked artery and I saw a change in him. He later had to have a defibrillator installed and I have noticed even bigger changes and not for the good. He has changed to someone who has little or no interest in anything including personal hygiene. He is now 72 years old and refuses to do anything that will improve his ability to participate in things we had planned to do during retirement. I am 64 and although I have physical limitations that make me a little slower I am still doing what I can to maintain my mobility.

Jump to this post

Hello @cindyt63,

Thanks for sharing the story about your husband's personality changes as a result of his surgeries. Have you discussed any of these changes with his physician? It could be that he might be dealing with some low-grade depression. When patients spend time in the ICU, Post-Intensive Care Syndrome often results. You might want to see the discussion on Connect about that topic. Here is the link,
https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/?pg=35#comment-313366
You are correct when you say, "It is up to us to do our research and learn as much as we can." It is important for every patient and their family members to do as much research as possible regarding their health conditions. In this way, all become better health-care consumers and take care of ourselves better.

REPLY
@berdyaev11

I'm very interested in the research now on cellular memory. I have also read some articles on how tastes and memories of the donor appear in some patients who have received a transplant. It is disturbing though to read about the amount of distress reported by transplant patients according to a study I saw on pubmed. This probably has to do with all the meds but perhaps something more. In the Bible, body and spirit intimately connected, so I wonder about this too. There was also an interesting article in the New York Times about bone marrow transplants with the title "When a DNA Test Says You're a Younger Man, and Live 5,000 Miles Away." Thanks and God bless.

Jump to this post

My nephew has now had his fourth kidney transplant. His personality changed with each one. The first donor was a family member and had the least change. The others were cadaver kidneys. The third donor had high blood pressure and took medication for it. My nephew had to take BP medication because the kidney was accustomed to it. The doctors are all aware of these changes in the recipients but the information is not shared with the family or general public. It is up to us to do our research and learn as much as we can.

I had always heard that patients who undergo open heart surgery experience a change in their personality as well. I think it is more than just those who have open heart surgery that are affected. My husband has had angioplasty to insert two stents in a blocked artery and I saw a change in him. He later had to have a defibrillator installed and I have noticed even bigger changes and not for the good. He has changed to someone who has little or no interest in anything including personal hygiene. He is now 72 years old and refuses to do anything that will improve his ability to participate in things we had planned to do during retirement. I am 64 and although I have physical limitations that make me a little slower I am still doing what I can to maintain my mobility.

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@hopeful33250

Hello @berdyaev11 and welcome to Mayo Connect!

Thank you for the article about DNA and bone marrow transplants. That is very interesting. I found a link to this article online to share with anyone who would like to read it:
https://www.avpress.com/news/when-dna-test-says-you-re-younger-man-live-miles/article_c5dcd4fa-197e-11ea-a9d7-ef7c4aa6dd03.html
Are you interested in this because you or a loved one has received a transplant of some type, @berdyaev11?

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Thank you very much.

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@berdyaev11

I'm very interested in the research now on cellular memory. I have also read some articles on how tastes and memories of the donor appear in some patients who have received a transplant. It is disturbing though to read about the amount of distress reported by transplant patients according to a study I saw on pubmed. This probably has to do with all the meds but perhaps something more. In the Bible, body and spirit intimately connected, so I wonder about this too. There was also an interesting article in the New York Times about bone marrow transplants with the title "When a DNA Test Says You're a Younger Man, and Live 5,000 Miles Away." Thanks and God bless.

Jump to this post

Hello @berdyaev11 and welcome to Mayo Connect!

Thank you for the article about DNA and bone marrow transplants. That is very interesting. I found a link to this article online to share with anyone who would like to read it:
https://www.avpress.com/news/when-dna-test-says-you-re-younger-man-live-miles/article_c5dcd4fa-197e-11ea-a9d7-ef7c4aa6dd03.html
Are you interested in this because you or a loved one has received a transplant of some type, @berdyaev11?

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@paradis

Hi Teresa,

Sure, I can get back to Connect after some time to share my further experience. I actually got here just because I was reading through different articles available online describing how various people changed after they got an organ transplanted from another person – and, many times, how they picked up certain habits, preferences, behaviors etc. from the donor. Which is, in my opinion, another taboo in this society, because of course, who wants to get an organ from, let's say, a nasty person? But, if you need an organ, you don't think twice. So, people often do not think about these things. But the cells do have a memory and patients and their relatives do notice these changes (thankfully, not always bad changes). As I said, this is a very wide topic but yes I do believe that this is possible since I learned certain things about our donor which explains a lot to me. If at least the society helped the caregivers more, that would be nice, but we don't get any real help from anywhere. Anyways, thanks for having me here and I really wish the best to everyone, I wish people were always healthy and nobody would have to suffer in any way.

Jump to this post

I'm very interested in the research now on cellular memory. I have also read some articles on how tastes and memories of the donor appear in some patients who have received a transplant. It is disturbing though to read about the amount of distress reported by transplant patients according to a study I saw on pubmed. This probably has to do with all the meds but perhaps something more. In the Bible, body and spirit intimately connected, so I wonder about this too. There was also an interesting article in the New York Times about bone marrow transplants with the title "When a DNA Test Says You're a Younger Man, and Live 5,000 Miles Away." Thanks and God bless.

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@hullegan

Hi Ginger thank you for your reply, concern and advice. I have spoken with him about his changes and memory impairment.
He says there’s nothing wrong with him that I am a ‘B’. And that since his transplant I’m “out to get him”. Omg!
His lab work is ideal. His does have pain from other conditions, arthritis and neuropathy. His diet is awful and he often drinks to excess. (But he has to drink in order to live with me, he says).
I spoke briefly to the social worker who is useless. She said , he’s such a nice man , just exercise patience. For 1-12 yrs I’ve asked the neph on different occasions to give him a dementia test. Yet she maintained that she noticed things about him
A couple yrs ago. But she’s done Nothing!!!!

As for divorce, he suggested that the marriage has no future.
In order to split I wouldn’t function well financially. His answer was … then live in poverty cuz I f.. n hate you and I hope you never get a decent nights sleep. I sleep like a log and he resents it. He resents that I am well but I am diabetic also . His favourite word towards me is 4 letter.
He picks and criticizes me moans, acts irrationally , curses worse than a truck driver about everything and I mean everything. He displays signs of ocd.
He has always had a short fuse but not like this. I see this behaviour in his Mother, his son and his grandson.
His son has not spoken to him in 20 years. Won’t even let him know where he lives.
That’s a big red flag.
I’ve been with him 19 years. He’s never worked a day in that time. He is now 70. I finally quit working because of his illness… had to hand hold sit with him while he dialysed for 2 years and still try to work when I was 70. Now 71.
Why should I stay where I’m obviously not wanted. Needed somewhat? Probably!

My GP Dr has referred me to a woman’s shelter. She suggests I leave. She will give him geriatric test. His nephrologist doesn’t seem to care that his illness affects me. I asked her a question once and she put her hand up in the air and said, Sorry, Lisa , I cant answer you , you’re not my patient I must treat Tom. I asked him to get another Dr. He refused.
There is no care or attention paid to family members.

Financially he’ll be fine. He has a large inheritance coming soon. He always promised to share that because I worked all those years while he went fishing, shooting, baking pies & cookies. I’ll get squat.
The least I should have is my peace of mind and freedom.
I saw how he treaded his X wife in their divorce so making sure she got nothing.
I’m not expecting this to be different. She couldn’t fight.., I can snd will.
I’m too old to stay and too old to leave.
Sigh 😔!
It’s been good to vent here. Thanks.

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Hello @hullegan It has been a while since you last posted about your marriage difficulties since your husband had a transplant. I was wondering if there have been any changes in your situation. How is your husband doing now? How are you coping with the changes?

Hello @destmg96 How are you doing these days with the stressors you mentioned a while ago? Are you feeling safe now?

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@hullegan

Hi Ginger thank you for your reply, concern and advice. I have spoken with him about his changes and memory impairment.
He says there’s nothing wrong with him that I am a ‘B’. And that since his transplant I’m “out to get him”. Omg!
His lab work is ideal. His does have pain from other conditions, arthritis and neuropathy. His diet is awful and he often drinks to excess. (But he has to drink in order to live with me, he says).
I spoke briefly to the social worker who is useless. She said , he’s such a nice man , just exercise patience. For 1-12 yrs I’ve asked the neph on different occasions to give him a dementia test. Yet she maintained that she noticed things about him
A couple yrs ago. But she’s done Nothing!!!!

As for divorce, he suggested that the marriage has no future.
In order to split I wouldn’t function well financially. His answer was … then live in poverty cuz I f.. n hate you and I hope you never get a decent nights sleep. I sleep like a log and he resents it. He resents that I am well but I am diabetic also . His favourite word towards me is 4 letter.
He picks and criticizes me moans, acts irrationally , curses worse than a truck driver about everything and I mean everything. He displays signs of ocd.
He has always had a short fuse but not like this. I see this behaviour in his Mother, his son and his grandson.
His son has not spoken to him in 20 years. Won’t even let him know where he lives.
That’s a big red flag.
I’ve been with him 19 years. He’s never worked a day in that time. He is now 70. I finally quit working because of his illness… had to hand hold sit with him while he dialysed for 2 years and still try to work when I was 70. Now 71.
Why should I stay where I’m obviously not wanted. Needed somewhat? Probably!

My GP Dr has referred me to a woman’s shelter. She suggests I leave. She will give him geriatric test. His nephrologist doesn’t seem to care that his illness affects me. I asked her a question once and she put her hand up in the air and said, Sorry, Lisa , I cant answer you , you’re not my patient I must treat Tom. I asked him to get another Dr. He refused.
There is no care or attention paid to family members.

Financially he’ll be fine. He has a large inheritance coming soon. He always promised to share that because I worked all those years while he went fishing, shooting, baking pies & cookies. I’ll get squat.
The least I should have is my peace of mind and freedom.
I saw how he treaded his X wife in their divorce so making sure she got nothing.
I’m not expecting this to be different. She couldn’t fight.., I can snd will.
I’m too old to stay and too old to leave.
Sigh 😔!
It’s been good to vent here. Thanks.

Jump to this post

@hullegan Your safety is paramount. It sounds like you have been given resources from local people there by you, of where to turn to. Take those steps when you're ready. Have yourself setup however you need to. Your emotional and mental health comes way before financial health. Ask me how I know; I know that because I've been there and done that. My ex-husband told me I could never make it on my own, which I took as a challenge and proved him completely wrong.
I'm glad you have a safe place to vent here. Please continue to do so, so that you don't get sick, too.
Ginger

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@gingerw

@hullegan Welcome to Mayo Clinic Connect. As others have noted, personality changes after a transplant can be fairly dramatic and drastic to not only the patient, but family and friends. Have you talked to your husband about this change in personality? What was he like before transplant? How long was he on dialysis, and did he have a good medical team to help guide him through the process? Have you had joint counseling or discussions with the transplant social worker? I wonder if a modification in his medications might help the situation? It's sad to hear that you feel you need to file for divorce, but your safety [physical, mental, and emotional] is paramount. Do you have a place that you can go to in case he has an outburst when he finds out about the filing for divorce? I would be careful and make sure that a few trusted friends know your situation. We hope that you will come back here and tell us how you are doing. We care.
Ginger

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Hi Ginger thank you for your reply, concern and advice. I have spoken with him about his changes and memory impairment.
He says there’s nothing wrong with him that I am a ‘B’. And that since his transplant I’m “out to get him”. Omg!
His lab work is ideal. His does have pain from other conditions, arthritis and neuropathy. His diet is awful and he often drinks to excess. (But he has to drink in order to live with me, he says).
I spoke briefly to the social worker who is useless. She said , he’s such a nice man , just exercise patience. For 1-12 yrs I’ve asked the neph on different occasions to give him a dementia test. Yet she maintained that she noticed things about him
A couple yrs ago. But she’s done Nothing!!!!

As for divorce, he suggested that the marriage has no future.
In order to split I wouldn’t function well financially. His answer was … then live in poverty cuz I f.. n hate you and I hope you never get a decent nights sleep. I sleep like a log and he resents it. He resents that I am well but I am diabetic also . His favourite word towards me is 4 letter.
He picks and criticizes me moans, acts irrationally , curses worse than a truck driver about everything and I mean everything. He displays signs of ocd.
He has always had a short fuse but not like this. I see this behaviour in his Mother, his son and his grandson.
His son has not spoken to him in 20 years. Won’t even let him know where he lives.
That’s a big red flag.
I’ve been with him 19 years. He’s never worked a day in that time. He is now 70. I finally quit working because of his illness… had to hand hold sit with him while he dialysed for 2 years and still try to work when I was 70. Now 71.
Why should I stay where I’m obviously not wanted. Needed somewhat? Probably!

My GP Dr has referred me to a woman’s shelter. She suggests I leave. She will give him geriatric test. His nephrologist doesn’t seem to care that his illness affects me. I asked her a question once and she put her hand up in the air and said, Sorry, Lisa , I cant answer you , you’re not my patient I must treat Tom. I asked him to get another Dr. He refused.
There is no care or attention paid to family members.

Financially he’ll be fine. He has a large inheritance coming soon. He always promised to share that because I worked all those years while he went fishing, shooting, baking pies & cookies. I’ll get squat.
The least I should have is my peace of mind and freedom.
I saw how he treaded his X wife in their divorce so making sure she got nothing.
I’m not expecting this to be different. She couldn’t fight.., I can snd will.
I’m too old to stay and too old to leave.
Sigh 😔!
It’s been good to vent here. Thanks.

REPLY
@hullegan

Wow paradis you hit the nail on the head. I experience much the same , a self centred. Rude screaming verbally abusive man. Everything is my fault and I’m the stupidest
most ignorant person he’s ever known. His language directed at me is vile. He has hysterical vicious outbursts of anger over the smallest things.
I just can’t stand it. Don’t deserve being treated like this … and will soon file for divorce. This situation has gradually become worse and I don’t see it getting better. One day his anger will be directed at me physically … it’s been too close for comfort. I’m getting out, while I’m still alive. I am terrified of his outbursts. He totally loses it!
I don’t care what anyone thinks of me. Yes, I’m leaving the ship before it goes down.
( yes I’ve tried everything, the church, Dr counseling. Now it’s time for the lawyer). This is s second rotten marriage. I’m done !
Thank you for listening. Amen!!

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Hello @hullegan and welcome to Mayo Connect,

I am so sorry to hear about your stressful marriage relationship following your husband's transplant. I can tell you are angry and frightened by his behavior and it is normal to want to protect yourself. I encourage you to do what you need to do in order to keep yourself both physically and emotionally safe. At Mayo Connect we care. Will you post again and provide an update on your situation?

Hello @destmg96

It has been a while since you first posted. How are you doing? Have you taken the necessary steps to find safety for yourself and your children?

Hello @paradis

How are you doing these days? Have you found some help for yourself?

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@hullegan

Wow paradis you hit the nail on the head. I experience much the same , a self centred. Rude screaming verbally abusive man. Everything is my fault and I’m the stupidest
most ignorant person he’s ever known. His language directed at me is vile. He has hysterical vicious outbursts of anger over the smallest things.
I just can’t stand it. Don’t deserve being treated like this … and will soon file for divorce. This situation has gradually become worse and I don’t see it getting better. One day his anger will be directed at me physically … it’s been too close for comfort. I’m getting out, while I’m still alive. I am terrified of his outbursts. He totally loses it!
I don’t care what anyone thinks of me. Yes, I’m leaving the ship before it goes down.
( yes I’ve tried everything, the church, Dr counseling. Now it’s time for the lawyer). This is s second rotten marriage. I’m done !
Thank you for listening. Amen!!

Jump to this post

@hullegan Welcome to Mayo Clinic Connect. As others have noted, personality changes after a transplant can be fairly dramatic and drastic to not only the patient, but family and friends. Have you talked to your husband about this change in personality? What was he like before transplant? How long was he on dialysis, and did he have a good medical team to help guide him through the process? Have you had joint counseling or discussions with the transplant social worker? I wonder if a modification in his medications might help the situation? It's sad to hear that you feel you need to file for divorce, but your safety [physical, mental, and emotional] is paramount. Do you have a place that you can go to in case he has an outburst when he finds out about the filing for divorce? I would be careful and make sure that a few trusted friends know your situation. We hope that you will come back here and tell us how you are doing. We care.
Ginger

REPLY
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