Heart transplant

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

Liked by @tbirdmunchkin

@rosemarya

@lupedelarosa12, I hope that your son is doing well. And I want to send you both my thoughts and wishes for a nice weekend, I used to enjoy the hospital weekends because they were quieter, with no procedures scheduled!
@lupedelarosa12, Please take care of yourself, too. Take some time to refresh. Get something to eat, take a nap, or maybe a short walk if the weather permits.
Rosemary

Jump to this post

He is doing well and is out of ICU. Maybe will be able to come home this week. I am really grateful to you and other Mayo Clinic Connect members. It really helped me when I had no one to talk to about how I felt and what I was going through, so thank you for everything, and yes I have made myself regroup, by taking walks, thank you.

REPLY

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

REPLY
@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

Jump to this post

Thank you so much

REPLY

You’re more than welcome. We’re here if ever you want to chat… we can Skype, WhatsApp, email … whatever helps. Just know you are not alone .. ever XXL

REPLY
@linda59

You’re more than welcome. We’re here if ever you want to chat… we can Skype, WhatsApp, email … whatever helps. Just know you are not alone .. ever XXL

Jump to this post

That would be awesome, I would love to keep in touch , he.will be coming home this week and they will be staying with me for a while , I know I will need some one I can talk to that knows what I will be going through , im so glad I joined this group and it has been so amazingly mentally helpful , im grateful for you and all the other heart transplant parents and families

REPLY
@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

Jump to this post

@linda59, Thank you for joining this discussion. I am happy to hear that your son is doing well. He is fortunate to have you to advocate for his needs when he was unable to do so himself.
Love and blessings to you, too, as your son continue this new life’s journey. Know that you are always welcome to enter into any of our discussions.
Rosemary

REPLY
@linda59

You’re more than welcome. We’re here if ever you want to chat… we can Skype, WhatsApp, email … whatever helps. Just know you are not alone .. ever XXL

Jump to this post

@lupedelarosa12, We are happy for your son – that his recovery is continuing to go forward. Going home is something to look forward to!
Rosemary

REPLY
@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

Jump to this post

Thanks Rosemary. We would have been lost souls if it had not been for you dear friends. Always so grateful…Kind regardsLinda 

REPLY
@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

Jump to this post

Thank you rosmary

REPLY
@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

Jump to this post

@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
.

Liked by linda59

REPLY
@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

Jump to this post

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

REPLY
@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

Jump to this post

@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

REPLY
@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.

Jump to this post

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)

REPLY
@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

Jump to this post

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.

Liked by @tbirdmunchkin

REPLY
@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

Jump to this post

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?

REPLY
Please login or register to post a reply.