Surprise Diagnosis - End-Stage Heart Failure

[Fraaahnces]

Three years ago I was diagnosed with Ehler’s Danlos Syndrome (EDS). This all happened when I dislocated my thumb doing CPR on a dummy. (Could only happen to me.) My hand surgeon looked at my orthopaedic history, did the Beighton tests and insisted that due to the severity of my POTS, I see a cardiologist. They diagnosed a bicuspid aortic valve, stating that it would need repair “eventually”. I’m now 51 and pretty energetic. Went for a routine scan and that turned into an emergency CAT Scan with contrast, a billion other tests, etc. Seems that my aortic valve is not causing any cardiac symptoms, but my ejection fraction is only 26 and I have severe dilated cardiomyopathy. I’m not a drinker, have never smoked, work a busy active job and exercise, etc. I’m so shocked! (So is my DH who came to the appointment too.) Am trying new meds, but am also going on the heart transplant list. Anyone else been through anything like this??

I haven't been through this but just wanted to come and give a hand hold, so sorry you've had this shock. I know it seems like a cruel irony when you've lived a healthy lifestyle but actually all those things will help you be an excellent transplant candidate and get over any surgery you may need. Hope someone comes along soon who might be of more help. Hugs to you OP.

Thanks for being so empathetic @2ndTimeAroundMum. I really appreciate your thoughts.

@Fraaahnces
There is cardiomyopathy Facebook support group and they are amazing. There are lots of posts on there similar to yours and they will offer lots of support and advice. Please join and have a look.

I had severe heart failure diagnosed 5 years ago, following what I thought was flu but was actually viral myocarditis leading to complete left bundle branch block and an ejection fraction of 24. I had gross dilated cardiomyopathy .
ended up pretty much unable to even walk across the room and if I went upstairs I had to sit down halfway up and again at the top in order to be able to breathe. My prognosis was 2-3 years.
Well, I’ve just had my 70th birthday, my medication is carefully monitored and upped regularly.
I probably won’t be eligible for a heart transplant, I understand that an implant might help once the medication stops working.
I wish you well 🤗

@Tiddlywinks63 - thank you so much for replying. This is almost exactly my story, but I also have a bicuspid aortic valve which is unrelated to the DCM. Just what I needed to hear. So pleased that you are alive and kicking. My EF is 23. I’m on the lowest dose of Entresto which is supposed to be titrated up if I can tolerate it. Current BP is approx 75/60 so not holding my breath. (As if I could anyway!) Had an iron infusion yesterday so we will see if it helps.

Oh and I’m 51… I have a long life planned.

My husband had DCM diagnosed in his mid forties, and was forced to retire within five years.

a very sedentary life, plus mega drug regime, has sorted the serious decline of his EF figures, and he is now stable, thankfully.

Hope the drugs and lifestyle changes help you too.

Oh @Fraaahnces - I am sorry to read that. What a shock.

I have a bit of experience of transplants - an uncle had one back in the late eighties. He was only the third person to have one in Ireland at the time. A brother in law had a kidney transplant a few years ago and is doing well. And my sister went into sudden liver failure in December and had a liver transplant. My uncle did really well considering it was such early days. My sister is doing well after her liver transplant although it’s early yet for her.

I am sure it is really scary and a lot to get your head around. Thinking of you.

How are you doing @Fraaahnces

Thank you everyone. I have been admitted to hospital and treated on the sepsis pathway. (Because no signs of infection on any of the bajillion tests they ran and I have been febrile and sitting under four or five blankets shivering like a cartoon character (chattering teeth and all!). Tomorrow they’re going to try and get a sonographer in to check for endocarditis and myocarditis.

How are you doing @Fraaahnces? I hope you're out of hospital and on the mend and with a good plan of action for going forward.

What a terrible shock you've had and then this. It's a lot. I hope you have lots of family and friendly support. Sending love

Hello @Fraaahnces I’m a regular name changer but recognise your username and just wanted to say I’m sorry to hear this, and sending you good thoughts

Didn't want to read and run and I hope you're doing ok x

Oh goodness OP, what a shock. Really hope you are doing OK now

Thanks everyone… I’m out of hospital and am trying to get my BP up. Very boring. I’m going to see my GP on Monday to see what’s next.