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Heart transplant: recovering but steroids are affecting behavior
Transplants | Last Active: Dec 21, 2020 | Replies (91)Comment receiving replies
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
Replies to "Hi there folks, sorry I'm late to the conversation but I do hope things are progressing..."
@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
Thanks Rosemary. We would have been lost souls if it had not been for you dear friends. Always so grateful...Kind regardsLinda
Thank you rosmary
@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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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
@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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Thank you so much