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?

My husband received a kidney April 2017, and his mood/personality changed almost immediately. We were required by the VA to stay in NY for 3 months to be near our VA transplant facility and I immediately noticed how angry, controlling, and indignant he became. It doesn’t help that he was already dealing with PTSD, which the docs attribute everything to. I don’t agree. I’m not the war. The kids aren’t the war. We are the ones he target most often. I genuinely believe that he gained more than a kidney and actually inherited personality traits from the donor. I believe in transferring energy/spirits and I think he got more than we bargained for. He was much more active and energetic before transplant..even while on dialysis for many years. He also seems entitled to ALL of my time and attention which is totally unfair. He’s 60..I’m 45….and my role has become caregiver instead of wife. Our intimate life ended 5 years ago, along with me enjoying all my interests and hobbies. He’s extremely jealous of the children now. He won’t pay bills anymore. He’s just generally unhappy. While we bear the brunt of it in the home, he lashes out at everyone he comes in contact with. I don’t know what to do as I am really afraid of what he may do and how I may react. He’s lost a considerable amount of weight going from 180 to 127 since transplant. He LOOKS ill and I think his self esteem and ego have been damaged because of it. I’ve been a good wife and even better caregiver..navigating transplant protocol along with the tangled web we call the VA. I’m just at my wits end, really contemplating filing a restraining order. I was relieved yet saddened to see the many people experiencing similar situations. I just wish they’d told us about this possible adverse reaction before transplant. Live on dialysis happy and loving or get a new kidney and become miserable, unhappy and mad at the world! I just don’t understand why no one hears me no matter how hard I scream HELP!!

Peace and Blessings to you all!!

REPLY
@destmg96

My husband received a kidney April 2017, and his mood/personality changed almost immediately. We were required by the VA to stay in NY for 3 months to be near our VA transplant facility and I immediately noticed how angry, controlling, and indignant he became. It doesn’t help that he was already dealing with PTSD, which the docs attribute everything to. I don’t agree. I’m not the war. The kids aren’t the war. We are the ones he target most often. I genuinely believe that he gained more than a kidney and actually inherited personality traits from the donor. I believe in transferring energy/spirits and I think he got more than we bargained for. He was much more active and energetic before transplant..even while on dialysis for many years. He also seems entitled to ALL of my time and attention which is totally unfair. He’s 60..I’m 45….and my role has become caregiver instead of wife. Our intimate life ended 5 years ago, along with me enjoying all my interests and hobbies. He’s extremely jealous of the children now. He won’t pay bills anymore. He’s just generally unhappy. While we bear the brunt of it in the home, he lashes out at everyone he comes in contact with. I don’t know what to do as I am really afraid of what he may do and how I may react. He’s lost a considerable amount of weight going from 180 to 127 since transplant. He LOOKS ill and I think his self esteem and ego have been damaged because of it. I’ve been a good wife and even better caregiver..navigating transplant protocol along with the tangled web we call the VA. I’m just at my wits end, really contemplating filing a restraining order. I was relieved yet saddened to see the many people experiencing similar situations. I just wish they’d told us about this possible adverse reaction before transplant. Live on dialysis happy and loving or get a new kidney and become miserable, unhappy and mad at the world! I just don’t understand why no one hears me no matter how hard I scream HELP!!

Peace and Blessings to you all!!

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@destmg96, I want to say Welcome to Mayo Clinic Connect. I am happy that you have posted your experience with caring for your husband. By way of introduction, I am a transplant recipient, and I have noticed minor changes in my reaction to situations, and my emotions are more sensitive than before. I don't know if that is a post transplant reaction due to side effects of the stress that I experienced during my failing health prior to my transplant, or to medications, or even a contrast to how poorly I felt before.
I don't understand why your husband feels this way.
I am concerned for what you have said about your call for HELP and no one hears you. Do you have someone,-friend, minister, social worker who you can go to for support and to talk about your needs?

REPLY
@destmg96

My husband received a kidney April 2017, and his mood/personality changed almost immediately. We were required by the VA to stay in NY for 3 months to be near our VA transplant facility and I immediately noticed how angry, controlling, and indignant he became. It doesn’t help that he was already dealing with PTSD, which the docs attribute everything to. I don’t agree. I’m not the war. The kids aren’t the war. We are the ones he target most often. I genuinely believe that he gained more than a kidney and actually inherited personality traits from the donor. I believe in transferring energy/spirits and I think he got more than we bargained for. He was much more active and energetic before transplant..even while on dialysis for many years. He also seems entitled to ALL of my time and attention which is totally unfair. He’s 60..I’m 45….and my role has become caregiver instead of wife. Our intimate life ended 5 years ago, along with me enjoying all my interests and hobbies. He’s extremely jealous of the children now. He won’t pay bills anymore. He’s just generally unhappy. While we bear the brunt of it in the home, he lashes out at everyone he comes in contact with. I don’t know what to do as I am really afraid of what he may do and how I may react. He’s lost a considerable amount of weight going from 180 to 127 since transplant. He LOOKS ill and I think his self esteem and ego have been damaged because of it. I’ve been a good wife and even better caregiver..navigating transplant protocol along with the tangled web we call the VA. I’m just at my wits end, really contemplating filing a restraining order. I was relieved yet saddened to see the many people experiencing similar situations. I just wish they’d told us about this possible adverse reaction before transplant. Live on dialysis happy and loving or get a new kidney and become miserable, unhappy and mad at the world! I just don’t understand why no one hears me no matter how hard I scream HELP!!

Peace and Blessings to you all!!

Jump to this post

Hi @destmg96, I want to add my welcome as well. As you have read here, caregivers have noticed slight to dramatic changes in their partners after transplant. I also found this 2014 study
Psychopathological aspects of kidney transplantation: Efficacy of a multidisciplinary team https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4274596/

The study states:
"Transplantation can result in a psychosomatic crisis that requires the patient to mobilize all bio-psycho-social resources during the process of adaptation to the new foreign organ which may result in an alteration in self-representation and identity, with possible psychopathologic repercussions. … the emotional experiences and the psychological and psychopathological complications related to organ donation and transplantation should not be underestimated. … Transplanted patient re-employment and social and family reintegration requires psychotherapeutic support to implement new coping strategies."

In plain language, what you are witnessing in your husband is real. And what affects him, affects you and your family. The study also stresses the importance of getting help. You and your husband should not be expected to handle this on your own.

Is your husband willing to get counselling and seek therapy?

Like @rosemarya, I'm concerned for YOU. You mentioned that no one hears you when you cry for help. Have you told your husband's Transplant Social Worker about the situation at home? A social worker can work with you to get help first for you. I think you're at your wit's end, worn out and should start with taking care of you first and how you can keep yourself safe.

REPLY
@destmg96

My husband received a kidney April 2017, and his mood/personality changed almost immediately. We were required by the VA to stay in NY for 3 months to be near our VA transplant facility and I immediately noticed how angry, controlling, and indignant he became. It doesn’t help that he was already dealing with PTSD, which the docs attribute everything to. I don’t agree. I’m not the war. The kids aren’t the war. We are the ones he target most often. I genuinely believe that he gained more than a kidney and actually inherited personality traits from the donor. I believe in transferring energy/spirits and I think he got more than we bargained for. He was much more active and energetic before transplant..even while on dialysis for many years. He also seems entitled to ALL of my time and attention which is totally unfair. He’s 60..I’m 45….and my role has become caregiver instead of wife. Our intimate life ended 5 years ago, along with me enjoying all my interests and hobbies. He’s extremely jealous of the children now. He won’t pay bills anymore. He’s just generally unhappy. While we bear the brunt of it in the home, he lashes out at everyone he comes in contact with. I don’t know what to do as I am really afraid of what he may do and how I may react. He’s lost a considerable amount of weight going from 180 to 127 since transplant. He LOOKS ill and I think his self esteem and ego have been damaged because of it. I’ve been a good wife and even better caregiver..navigating transplant protocol along with the tangled web we call the VA. I’m just at my wits end, really contemplating filing a restraining order. I was relieved yet saddened to see the many people experiencing similar situations. I just wish they’d told us about this possible adverse reaction before transplant. Live on dialysis happy and loving or get a new kidney and become miserable, unhappy and mad at the world! I just don’t understand why no one hears me no matter how hard I scream HELP!!

Peace and Blessings to you all!!

Jump to this post

Hello @destmg96

I just read your post and feel concerned for you. The onset of a personality change is very difficult and can feel very dangerous when the change involves trying to control others or blaming others. This is the time you need to protect yourself and your children from continued emotional, verbal and/or physical abuse. These types of situations can have a long-lasting effect, especially on children.

I would encourage you to seek out a shelter that provides protection for domestic violence survivors until you can get a restraining order in place. If possible, you might consider bringing an attorney and law enforcement into this situation as well.

Please know that I care and want you to be safe!

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@paradis

Dear all, thanks a lot for your kind words. I can assure you that after 10+ years of caregiving and handling almost everything myself, I already went through the whole internet to read about every possible aspect of the transplant journey. At times I also did participate at various caregiver support forums, etc. however realistically, this won't help you. Because, this reality is here every day, every hour and every second of your life. It won't go away. It just gets worse when over time your husband's personality changes drastically and you are supposed to still take care of an ungrateful person who has no problem yelling at you, putting you down, etc. Yes I talked to church, doctors, friends, God, you name it, but no, it won't help you because first of all, he would have to be willing to go to a psychologist or psychiatrist and he just refuses to do so! He believes that he is totally normal which he clearly is not. I could write a book about this and one day I probably will but I would like to warn everyone to think twice before committing to something like this. I do not expect any special gratitude, I did everything because I truly believed that it was a right thing to do but now I think that I sacrificed my life and my health to something that most likely wasn't worth it. This illness brought down not only him but also me and it is very questionable what is right and what is wrong. I am sure that most patients do understand how much efforts, energy, emotions, etc. is invested by their caregivers to help them in their unfortunate situation however in my specific case, this was an awful experience and if things don't get better I will probably be forced to file for a divorce. Which is against my heart but at some point, I have to protect myself and my child too. I wish you all the best, no worries, I'm fine and will be fine, I just wanted to let people know that these things don't always turn well for caregivers.

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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!!

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!!

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
@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

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?

REPLY
@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

Jump to this post

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

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

REPLY
@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

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?

REPLY
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