Heart transplant: recovering but steroids are affecting behavior

@lupedelarosa12, I am not familiar with that. I do remember being somewhat confused and overwhelmed with all the changes after my transplant surgery because I lost track of some time and events. And I needed my husband to fill me in on the confusion in my mind at a later time. But that is not what you are describing here.
I would like to introduce you to one of our moderators, Annie @andreab. Annie has experience with PICS (Post Intensive Care Syndrome). I do not know if being currently in ICU will be significant or not, Annie, do you have information to share with Lupe? Her son is currently in ICU following his heart transplant.
Rosemary

Hi @lupedelarosa12,
Here is some information about ICU delirium, including things you can do to help http://www.icudelirium.org/docs/delirium_education_brochure.pdf

Thank you very much

Thanks for pulling me into this conversation @rosemarya! @lupedelarosa12 it can be really awful and scary to see your loved one struggle in any way. I agree with all of the previous comments, that working with your medical team and heading their guidance is best. Any time spent in an ICU can lead to what is called ICU delirium. It can be a very difficult thing to avoid, and can take time to resolve. The waiting can be the most painful part. One thing that has been found to help patients and families through this is keeping a daily journal. Once your son has recovered from this, he will be able to review this journal and understand what was really happening during the days where he felt so confused. It will replace confusion, delirious memories, hallucinations, etc. with reality and that has been shown to be very impactful in recovery.

This can also be extraordinarily stressful for families. There is some information regarding this on our Pages site that you might find helpful: https://connect.mayoclinic.org/page/pics/. This post specifically might be helpful to you: https://connect.mayoclinic.org/discussion/post-icu-syndrome-tedx-talk/

@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

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.

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

Thank you so much

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

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