Waiting for a heart transplant AMA

[HowMuchOfYourHeart]

That’s it really. Been in heart failure for 8 years and just recently been assessed and listed for transplant.

Nothing to ask but I just wanted to say I am rooting for you.

Transplant is such an emotive and fraught thing.

We have been on the other side (agreed to donate our siblings organs) and we were so pleased she helped so many people. She would have been pleased too and I’m so glad we had talked about it as a family as we had no hesitation or doubts.

I wish you good health x

So sorry for your loss.

This is one of the things which I emphasise the most, that people need to talk to their families. People are under the misguided belief that opt-out means that they don’t have to have these discussions, but ultimately the family still have the ultimate say, and families are less likely to agree to donation if the donor’s wishes aren’t known. The figure is spectacularly high i.e. approximately 50% of families decline organ donation if the deceased’s wishes aren’t known to them - even if they carry a donor card. But that figure drops to just 10% if those wishes are known. Which is why talking to family is so important.

Ooo I do have a question actually - what’s in your go bag?

Best of luck OP!

Can I ask the cause of your HF?
How long have you been listed?
What are you most looking forward to being able to do pot transplant?

It is the most selfless, kindest, thoughtful but painful decision that any individual and their families can make.

I feel very strongly about talking about this and for my nearest & dearest being aware and their wishes known.
I would donate my organs no question if I was able. Everyone I know, knows this.

Post transplant obv!

I have nightwear, some clothes and underwear, toiletries, I bought an extra phone charger/plug as well as a portable charger in case i don’t have access to a socket.
It’s worth bearing in mind that if you get called it doesn’t necessarily mean that the transplant will go ahead, because if the heart isn’t considered good enough for transplant they can call time at the last minute, so as much as you have to be prepared to go in for transplant, you also have to take clothes etc for if you end up going home again.

I have a condition called hypertrophic cardiomyopathy which I was unaware of until I caught the flu 8 years ago and ended up in ICU with additional heart damage.

At the moment I am living a fairly normal life, but I think the thing I am most looking forward to is not having to worry about what impact anything is going to have on my heart iyswim.

I have been listed very recently - in the past couple of months, it’s a process from assessment to meeting surgeons and signing consent forms and such. While I feel mostly well ATM it’s a window of opportunity, since the average wait for a heart is around two years, so they don’t want to potentially leave it too late iyswim.

Other things to add to your bag - a cup with a lid (like a child’s sippy cup). The meds will make your hands shake terribly for the first few weeks post tx and this kind of cup helps. Also down load some audio books, you wont have the concentration span to read but it’s nice to lie and listen to them, and good luck, from a fellow heart transplantee :)

How’s things @HowMuchOfYourHeart

I was searching for heart failure as I have this diagnosis. And wondered at what stage you get to before transplant is considered?

Also searched for heart transplant - I have dilated cardiomyopathy and my consultant mentioned the possibility of a heart transplant in the future to me this morning. Hopefully not for a while but will have to see how things go.

Hope all went well for you OP and sorry you also have HF Pink

@CorporaINobbyNobbs this is my diagnosis too. I have no idea what caused it but they’re investigating.
Cardiomyopathy UK held a webinar via Eventbrite recently. Unfortunately I couldn’t attend.

Are you having any treatment?

Oh they also have sessions in towards transplant coming up.

I have a genetic mutation which causes it (inherited from my father) - also prone to abnormal heart rhythms and heart block so I’ve had a pacemaker/ICD for a few years now. Am on lots of meds to slow down heart rate deterioration so will just have to see how it goes. Hopefully heart transplant not on the horizon for a while yet but just don’t know.

Thanks for answering @CorporaINobbyNobbs
ive just had the blood test for genetic testing. Awaiting results. Lots of meds to slow the pressure on my heart too. Sounds like im
earky on in my journey. The consultant I have is the transplant specialist. It’s scary but have to keep
going.

Yes Pink hopefully the transplant is far down the line for us if necessary at all! It’s very unpredictable but treatment getting better all the time.

Could I ask are you on hrt ar all? My gp has taken me off it and I’ve been referred to the menopause clinic. 6 month wait and my symptoms are returning but obviously I have to look after my heart as priority.

Best of luck!

I spent some time in ICU with my neice. The 10 year old girl if the next bed was not as lucky as my neice and her parents donated her organs. Not sure I could have done it but I recall thinking what a remarkable selfless act it was. RIP young girl with the long blonde hair.

Hi @Pinkfluffypencilcase no HRT here, i’m not menopausal yet (am 45). So I don’t really anything about that.

We have close experience of this in the family and it can be life changing . I am sorry you need it OP and wish you so well with it . I signed up as a donor without hesitation having been a bit reticent at the idea when younger. It can make such an important difference .

@HowMuchOfYourHeart hi there, hope you don’t mind me piggybacking on your old thread. Do you mind updating us on where you are at now? A family member is being assessed and it feels surreal.

@Schoolrefusa if you wouldn’t mind sharing you’re out too I’d be very grateful

*HeidiHighHoDeHo *yes my family member had a very good quality of life post transplant and lived life more fully than most as never took it for granted . We remain so grateful to the amazing surgeon and team who did an amazing job .

Thank you.

can I asked how long after being placed on the list they waited for heart?

*HeidiHighHoDeHo *I'm afraid I don't know but also this was some 30 years ago .