ICD insertion and went for Heart Transplant

[MIS_G]

Hi friends,

I have insertion of ICD on 5th April, 2024 from City Hospital, Nottingham but I am enlisted in waiting list of heart transplant from Royal popwarth Hospital, Cambridge.

Suddenly I received a call from my Hospital Co-ordinator at 2.00Am midnight on 24/04/2024 that are you ready to go for heart transplant and we found heart donor for you but I was not expecting this while I was enlisted in October, 2023. He informed me that transport will pick you around 3.30 AM and hopefully we will go transplant at 6.30 Am in morning. I said ok.

I prepared myself and reached there around 5.30 Am but I waiting waiting ……..they did some tests and some other preparation as required for same but around 11.30 Am the coordinator came to me and sorry donor heart was not fine for transplant so you can go home and this was your rehearsal for next time.🌹🙏

so all friends to pray for me for the best. Thanks

[Cherrelleford]

Bless you. Fingers crossed and sending prayers your way xx

[sturon]

As the transplant coordinator said 'see this as a rehearsal'. You will know what to expect when the time is right. One thing this shows you are definitely on the list and the systems are in place to send for you when it is your time. Good luck and lets hope it is soon.

[Traveldreams]

so stressful for you, at least you know that you’re in mind and at the top of the list but I can’t imagine how you feel. Good luck and let us know how it goes.

[Driver11]

Can't imagine how you feel but at least you know it will get done soon Good luck

[Thanksnhs]

Hi the same thing happened to me although I was an inpatient, I waited on the routine list for over two years no call, eventually I was put on the urgent list and admitted to wait. It was the middle of lockdown July 2020 no visitors, I got wakened in the early hours of the morning after about a week by my nurse, up showered, goonie on ready to go and then my consultant came in and said no go the antibodies don't match. It's a weird feeling when something as major as that happens when the adrenaline has been pumping along with the fear of such a large operation,I think I just crawled back to bed in shock. A week or so later we were good to go it all happened in a flash suddenly my room was filled with every medic I knew and I was heading for theatre. It was completely successful and the after care was absolutely brilliant, discharged in just over two weeks and I lived alone, they made sure I could cope with the stairs etc. it has changed my life everything is so much easier to do, it is amazing, you soon get used to the daily meds routine and hospital appointments. I cannot thank everyone involved enough and the wonderful Golden Jubilee hospital in Scotland. I wish you well and I hope you don't have much longer to wait and like me 2nd time lucky. Take care and keep me posted how you getting on. Char

[DodgyTickerMum in reply to Thanksnhs]

I just want to say - I read your response here and your Bio recently and I think you should become the poster girl for heart surgery! ❤️‍🩹You’ve been through so much - definitely more than most and have such positive advice for anyone here, facing the prospect of O.H.S.

To be out, back at home following a transplant, in a little over 2 wks is just phenomenal. (I was in for 2 wks for a valve replacement!)

I’m sure the donor’s family would be so pleased to hear how successful your surgery was and that their loved one, is living on through you. What an inspiration you are. Keep well! 😊

[Thanksnhs in reply to DodgyTickerMum]

Thank you so much for your kind words, it looks like you have been through the mill as well, it must have been so hard not being able to eat or swallow properly and still be recovering from surgery.On my heart anniversary I the 26th July I always think of the family that are grieving for their, sister, daughter, mother and I have a quiet moment being a donor is a wonderful selfless thing to do. It took me a while to fully recover and get used to the meds and their side effects but once the dosage was released and the happy day I finished with the steroids things were a lot better.

Take care char x

[Scotland24 in reply to Thanksnhs]

sounds like you had an amazing team at the Golden Jubilee. I have an appointment with them next week to consider transplant. I have cardiomyopathy with diastolic heart failure and arrhythmias, also have an icd. Not sure what to expect? But kinda looks like I will be goi ng the transplant route. X

[DodgyTickerMum]

So very sorry to hear this. I can’t imagine the turmoil that news must have caused. I hope you don’t have too much longer to wait. Keep strong.

[OreoCookie27]

Hi,What was it like having an ICD fitted? Waiting for mine in the next few weeks and dreading it.

Thanks Oreo