Heart transplant: recovering but steroids are affecting behavior

Posted by lupedelarosa12 @lupedelarosa12, Feb 28, 2017

My son has had a heart transplant and is recovering but is on a high dose of steroids and is acting really different coherent , bilegernt, not him at all , is this normal

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@linda59

Hi there folks, sorry I’m late to the conversation but I do hope things are progressing gently and that your son is feeling a whole lot better soon. As I mum I can relate to the worry, concern and care for him. Our son (29yrs old -3 years post op) went through a similar journey. So much so the staff were going to get the psyche team involved… I counselled against this as it was not so serious ( as a therapist I wanted him to be able to feel his feelings .. as long as he could contain them, with encouragement and as long as he could cope with some confusion) and he didn’t want such intervention. He came around quite quickly, thank Goodness!
Steroids can and did make him crasy but once the levels were reduced and monitored he did better.

As parents we have connected with a local ‘ Carers’ centre which is brilliant. We are taking better care of ourselves and therefore him. They run all sorts of courses.. sleep, worryi workshops, wellbeing events, etc etc. It has saved us!!

We wish you a gentle journey forward. My mantra is ‘one day at a time’ … sometimes ‘ one breath at a time’ but always starts with ‘ giving thanks for his new heart, his donor, the donor family, the staff and finally for each and every day we have been able to share with him since. It’s a long road but your in good company,

Love and blessings to all
Linda and Damien

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@linda59, I am honored to have been a part of your support when things were difficult for you. I just realized that you, Colleen, and I have met before on Connect. Thank you for your kind words. I am happy to meet you again.
I send you a heartfelt thankyou for the support that you are now sharing with @lupedelarosa12. I know that there is a special kind of bond between those of us who are touched by organ transplant. We understand the journey, and we understand what each other is going thru.
We have been blessed.
Rosemary
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@linda59

Hi there folks, sorry I’m late to the conversation but I do hope things are progressing gently and that your son is feeling a whole lot better soon. As I mum I can relate to the worry, concern and care for him. Our son (29yrs old -3 years post op) went through a similar journey. So much so the staff were going to get the psyche team involved… I counselled against this as it was not so serious ( as a therapist I wanted him to be able to feel his feelings .. as long as he could contain them, with encouragement and as long as he could cope with some confusion) and he didn’t want such intervention. He came around quite quickly, thank Goodness!
Steroids can and did make him crasy but once the levels were reduced and monitored he did better.

As parents we have connected with a local ‘ Carers’ centre which is brilliant. We are taking better care of ourselves and therefore him. They run all sorts of courses.. sleep, worryi workshops, wellbeing events, etc etc. It has saved us!!

We wish you a gentle journey forward. My mantra is ‘one day at a time’ … sometimes ‘ one breath at a time’ but always starts with ‘ giving thanks for his new heart, his donor, the donor family, the staff and finally for each and every day we have been able to share with him since. It’s a long road but your in good company,

Love and blessings to all
Linda and Damien

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Thank you , just wanted to let you know that I feel really blessed to be a part of this group, I want to start by saying my son Alex came home on March 14 yesterday on his birthday , how awesome is that , we are so blessed and grateful f or him and his donor, I am nervous about it not wanted him to get any infections, due to having babies that are usually having a runny nose , but him washing his hands often amd wearing his mask around his mouth and nose always might prevent , but I will continue my journey with you and everday stories with you all , thank you all

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@linda59

Hi there folks, sorry I’m late to the conversation but I do hope things are progressing gently and that your son is feeling a whole lot better soon. As I mum I can relate to the worry, concern and care for him. Our son (29yrs old -3 years post op) went through a similar journey. So much so the staff were going to get the psyche team involved… I counselled against this as it was not so serious ( as a therapist I wanted him to be able to feel his feelings .. as long as he could contain them, with encouragement and as long as he could cope with some confusion) and he didn’t want such intervention. He came around quite quickly, thank Goodness!
Steroids can and did make him crasy but once the levels were reduced and monitored he did better.

As parents we have connected with a local ‘ Carers’ centre which is brilliant. We are taking better care of ourselves and therefore him. They run all sorts of courses.. sleep, worryi workshops, wellbeing events, etc etc. It has saved us!!

We wish you a gentle journey forward. My mantra is ‘one day at a time’ … sometimes ‘ one breath at a time’ but always starts with ‘ giving thanks for his new heart, his donor, the donor family, the staff and finally for each and every day we have been able to share with him since. It’s a long road but your in good company,

Love and blessings to all
Linda and Damien

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@lupedelarosa12, We share your joy at Alex’s homecoming and your gratitude for his donor. It is awesome. We thank you for becoming our friend on Connect. Your questions, and your sharing have allowed us to be participants in this miracle! We look forward to an ongoing friendship. And we eagerly await hearing of the milestones as his life returns to normal.

A request from me, is to help him to get the rest that he needs, and to him to be patient as he continues the recovery. Take it one day at a time! As you must already know, the medical team and his nurse are the best source of information

To help you later on, as he gets out-and-about, we do have a discussion where some of our transplant recipients are sharing hints for daily healthy living after transplant. Here is the link to the discussion for whenever you might want to look at it. https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/

I’m sending hugs to all of you,
Rosemary

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@incrediblemulk98

My father was put on a steroid regimen after his heart transplant and there were several changes to his mood even up to 3 months after cessation. It is perfectly normal but feel free to ask the physician. The only thing I would look out for is OVER agression like something resembling psychosis which is really rare but not unheard of.

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I had a knee replacement surgery and got delirium. It was from the anesthesia or pain meds. For 4 days i wanted to see my family and thought the nurses wouldn’t let me so I kept trying to climb out of bed to leave the hospital. I was in an awful state of mind but kept acting like I was having the best time of my life when they were there but my mind was elsewhere. I remember things I did while I was delirium but didn’t remember anything that happened in the hospital but bits and pieces.
I know this is different from what you went through but if you ever want to know what happens when you are in this state get in touch with me. God bless you and your family
Marie (marield65)

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@rosemarya

@lupedelarosa12, Welcome to Connect. I am a liver/kidney transplant recipient. I encourage you to talk to his transplant coordinator or transplant team about this. They are the only ones who have the knowledge to answer your question. It is okay to call them, even if it is between appointments.

If you feel this is urgent and needs to be addressed tonight, you should call his doctor’s office and see who is on call to help you with this.

I’ll be back online tomorrow.
Rosemary

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My father had a heart transplant July 2017 at the age of 71. He is still on his steroids (although the amount is decreasing). He certainly has a different attitude. I get the brunt of it as I am the one that handles a substantial part of his care. He becomes very agitated and angry when things are not going his way. He will be very demanding and raise his voice with me. He seems to have some short term memory loss but nothing major. He has had severe GI issues since the transplant and really seems to add to the bad attitude. Wonder how you have managed with your son’s changes? It can be hard to cope with.

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@rosemarya

@lupedelarosa12, Welcome to Connect. I am a liver/kidney transplant recipient. I encourage you to talk to his transplant coordinator or transplant team about this. They are the only ones who have the knowledge to answer your question. It is okay to call them, even if it is between appointments.

If you feel this is urgent and needs to be addressed tonight, you should call his doctor’s office and see who is on call to help you with this.

I’ll be back online tomorrow.
Rosemary

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Welcome to Connect, @fatherscaregiver
I can definitely relate. My father lashed out too when he was in my care (colon cancer, not heart transplant). While we wait for @lupedelarosa12 to return to the discussion to share her experiences about her son with you, I’d like to also introduce you to other heart transplant recipients @amynewheart @eileenheart and @bsox1901. They may be able to shed some like on the GI issues.

Fatherscaregiver, July is not that long ago. Healing mentally and physically takes time. Have you read this discussion about Post-Intensive Care Syndrome (PICS) https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/ I think you’ll find it interesting.

These changes certainly can be hard to cope with. Do you have any help from other family members so you can step back occasionally?

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@rosemarya

@lupedelarosa12, Welcome to Connect. I am a liver/kidney transplant recipient. I encourage you to talk to his transplant coordinator or transplant team about this. They are the only ones who have the knowledge to answer your question. It is okay to call them, even if it is between appointments.

If you feel this is urgent and needs to be addressed tonight, you should call his doctor’s office and see who is on call to help you with this.

I’ll be back online tomorrow.
Rosemary

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Hi and thanks for responding so quickly! I have read the PICS discussion. We see the transplant psychologist tomorrow morning and hoping she can help with the emotional state. As far as his physical recovery I think he is extremely delayed because of the GI problems. They are extensive, he has accidents that even depends cannot contain. This has been going on since he has been home post transplant and seem to be only getting worse. I know he is miserable, anyone would be. I think this also contributes to the depression and lack of trying to recover. The GI problems are most likely medication and diet. He is not too compliant when it comes to diet. I try explaining that poor diet will only lead to further complications and medical problems. He does not listen to me just gets angry with me.
I had a family member and a friend stay with him for the first month after coming home. They were wonderful and I could not have done it without them. My sister stayed with him for five nights after our friend went back home. All of our family lives out of town. He is completely reliant on my husband, son and myself. I feel it is my responsibility and have trouble expecting or asking my husband to help. He does help and it is very much appreciated! He will often stop in to check on him or help while I am at work. My son spends the night with my dad to make sure somebody is there overnight if he needs anything. I am expected to basically be on call for him. I don’t think he understands or cares that I must work. I leave my house at 5:45am and work 10 hour days to try to get my 40 hours in a week. I take a lot of time off work for doctor’s appointments, etc. When I get off work I am running getting his groceries, prescriptions, cleaning or whatever else he needs. I am often not home until after 9:00pm. I have been doing this since he was listed.
I do not expect anything return, he is my father and I will do whatever I can for him. I guess I do expect a few things from him and that is respect and for him to contribute to his recovery. He is very dependent on me and isn’t very willing to aid in his recovery. I feel at this point in the recovery he should be compliant with his diet and exercises. I truly believe this will help with emotional and physical recovery. I also feel he isn’t being appreciative or grateful for everything everyone has done for him. His transplant coordinator is the best! His doctors and nurses, his family and friends that have helped, the donor and the donor’s family deserve and expect him to make every effort possible to have a healthy, happy second chance at life.
I know I am not in his shoes and can’t fully understand how he feels. I do try, but I can honestly say my patience is running thin. There is only so much demands and nasty out bursts one can take. He does not yell or get nasty with anybody other than my husband, my son and mostly myself.
I am hoping that maybe other caregivers and heart transplant recipients can share their experiences during recovery.
Thank you so much for listening and have a great day!

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@rosemarya

@lupedelarosa12, Welcome to Connect. I am a liver/kidney transplant recipient. I encourage you to talk to his transplant coordinator or transplant team about this. They are the only ones who have the knowledge to answer your question. It is okay to call them, even if it is between appointments.

If you feel this is urgent and needs to be addressed tonight, you should call his doctor’s office and see who is on call to help you with this.

I’ll be back online tomorrow.
Rosemary

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@fatherscaregiver I wonder if this discussion thread might be helpful for you: https://connect.mayoclinic.org/group/caregivers/

It will connect you with other caregivers who have experienced many of the same challenges that you have shared with us.

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@rosemarya

@lupedelarosa12, Welcome to Connect. I am a liver/kidney transplant recipient. I encourage you to talk to his transplant coordinator or transplant team about this. They are the only ones who have the knowledge to answer your question. It is okay to call them, even if it is between appointments.

If you feel this is urgent and needs to be addressed tonight, you should call his doctor’s office and see who is on call to help you with this.

I’ll be back online tomorrow.
Rosemary

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There are so many echoes of recognition in your message, @fatherscaregiver. I’m brought back to my own situation with my father.
Food is such a touchy subject. It is attached to much more than just nutrition. It is also frustrating when someone, who has received so much care from so many people, chooses not to follow a healthy lifestyle. His food choices may be something you can’t change. But I encourage you to have a frank conversation with your father about respect. While your love is unconditional and your commitment to duty unshakable, you and your husband and son shouldn’t be subjected to disrespect. Better to establish that sooner than later. Now I’m starting to sound like a counselor. I’m not. But as a fellow caregiver, I share my story and thoughts. Take them if they suit your situation. Only you walk in your shoes.

I agree with Annie. Please check out the Caregivers Group as well as this group. If you post there, you will get a lot of support from caregivers in the same situation. https://connect.mayoclinic.org/group/caregivers/

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@rosemarya

@lupedelarosa12, Welcome to Connect. I am a liver/kidney transplant recipient. I encourage you to talk to his transplant coordinator or transplant team about this. They are the only ones who have the knowledge to answer your question. It is okay to call them, even if it is between appointments.

If you feel this is urgent and needs to be addressed tonight, you should call his doctor’s office and see who is on call to help you with this.

I’ll be back online tomorrow.
Rosemary

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Thank you for the response and understanding! I have talked with him on several occasions about the food but he will sneak it. It is impressive how they can ask a friend to stop and grab a treat. As far as the respect and the manner he speaks to us. He blames it on his steroids. I know that steroids to cause the change in temper and attitude but he controls it without side people. That makes me feel like he should control it with us as well. We are going to have a nice conversation with the psychologist tomorrow about it. I did check the caregivers group briefly and will be looking at it more closely as time permits.
Thank you again!

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@rosemarya

@lupedelarosa12, Welcome to Connect. I am a liver/kidney transplant recipient. I encourage you to talk to his transplant coordinator or transplant team about this. They are the only ones who have the knowledge to answer your question. It is okay to call them, even if it is between appointments.

If you feel this is urgent and needs to be addressed tonight, you should call his doctor’s office and see who is on call to help you with this.

I’ll be back online tomorrow.
Rosemary

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@fatherscaregiver – I want to ask how is your dad doing? I know you mentioned an appointment with transplant team psychologist. Did you (and dad) receive any helpful information?
I am a liver/kidney transplant recipient. My recovery after transplant was immediate; it follow a very difficult pretransplant peroid. I was 60 at the time. I felt jubilant after the surgery. But frustrated too, when I had to “go slow” for a while. Do you think that is part of what is going on?
How is your dad recovering from the surgery? How is his physical progress coming?
Rosemary

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@rosemarya

@lupedelarosa12, Welcome to Connect. I am a liver/kidney transplant recipient. I encourage you to talk to his transplant coordinator or transplant team about this. They are the only ones who have the knowledge to answer your question. It is okay to call them, even if it is between appointments.

If you feel this is urgent and needs to be addressed tonight, you should call his doctor’s office and see who is on call to help you with this.

I’ll be back online tomorrow.
Rosemary

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@incrediblemulk98 I haven’t seen any posts recently from you. I do hope that you and your dad are doing well.
I recall that you have mentioned how your dad reacted to steroids following his heart transplant surgery.
Do you have anything that might be helpful to @fatherscaregiver while she is struggling with her own father’s post heart transplant caregiving?
In advance, Thank you.
Rosemary

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