I am in heart failure AMA

[DontGoBreakingMyHeart]

Diagnosed 7 years ago. The term heart failure strikes so much fear into people.

I have been from one end of the spectrum (cardiac arrest) to the other, where I am now living a normal life.

Feel free to ask me anything.

Hi OP - I have a relative with HF who was diagnosed 6 years ago so very similar.
Have you found it a struggle to get the balance of medications right? Do you have linked issues or issues arising as a result of the HF - kidney disease, diabetes? Do you have a pacemaker?

Could you tell is a bit more. My df had heart failure but this was back in the 90s and I expect your treatment and quality of life is completely different nowadays

Did you have any symptoms before the heart attack? Glad to hear you are able to lead a relatively normal life again 💐

Hi no questions. Just wanted to say I hope you're as well as can be. My DF is currently in the end stages of heart failure,couple of months left at most.he has a very rare genetic disease which I have been diagnosed with. I don't know my prognosis yet,but not looking good. If you ever need to chat, you can always private message me 💐💐

In the beginning it was a careful balancing act between the correct doses of beta blockers and anti arrhythmia drugs. But I have an excellent team and when I crashed all my meds were changed and I have been pretty much stable ever since.

I had an ICD fitted four years ago after I had my cardiac arrest. This was originally on the cards anyway due to my condition, but was somewhat brought forward.

I was scheduled for a valve replacement but was told I wouldn’t survive it so had a mitraclip fitted instead which is a partial mitral valve repair done through the groin so less invasive. The procedure was only actually licenced for use on the NHS in December 2018 and I had mine in 2019.

I don’t have any other issues (yet) but one of the drugs I take has the potential for kidney/liver failure/thyroid issues and because of that I have to have regular blood tests.

I think the definition of heart failure has changed massively over the years.

Heart failure used to essentially mean you were at death’s door because your heart was literally about to fail. Now it means that your heart isn’t acting as efficiently as it should be, and covers a multitude of conditions.

I have hypertrophic cardiomyopathy, atrial fibrillation and mitral regurgitation as well as a leaking tricuspid valve. Also my heart isn’t a normal shape. In isolation these things might not be an issue, but combined there is potential for things to go very wrong very quickly. But due to my meds as well as my ICD and mitraclip which I had fitted to partially repair the mitral valve, I am now living a normal life.

I have been told this will be a temporary fix and that I will need a transplant in the future. But tbh I think they thought it would have been sooner than now and I’m still going, so at this stage who knows. I won’t think about that until I have to.

Thanks. How does it affect your everyday life?

A cardiac arrest is actually different to a heart attack. A heart attack is generally caused by a blockage, whereas a cardiac arrest can be caused by all manner of things, irregular heartbeat, the heart rate going too slow or too fast.

I was lucky, was in hospital at the time and had already spent ten days on ICU and was back up on the coronary care unit at the time.I was actually doing fairly well at the tie, had bee out of bed etc. Then I woke up in the night, sat up, and the whole world started spinning around me. Rang the bell, the crash team came and then my heart stopped. It was really as quick as that. If it hadn’t been for the fact I was in hospital at the time there is no way I would have survived it.

It's great to hear you're doing so well OP

I’m so sorry to read this. I hope your dad is as peaceful as he can be.

In terms of your prognosis, cardiac medicine is ever improving, I am constantly amazed when I read about new treatments which are available now which weren’t available before I was diagnosed.

Thank you. Yes medicine is improving all the time and I hope you're getting all the care you need. And I hope you have a great 'real life' support network

before I had my mitraclip fitted I had lost all independence. Couldn’t walk from my lounge to my kitchen without being breathless, and my heart raced constantly.

Now my life is pretty much normal, and on the whole if you didn’t know, you wouldn’t know. I have occasional episodes where my heart rate goes up or where the beat becomes arhythmic, but on the whole these do pass off.

I have to be cautious about what I eat/drink sometimes, keep off the salt where possible and limit my fluid intake. I’m also on warferin and it’s amazing the things which have an impact on it. But most of that stuff is just part of my routine now and I think my family worry about it more than I do.

I know I am essentially on borrowed time but the reality is that we all are. It’s just that sometimes we have an insight into how that might be.

TBH I’m more afraid of regressing back to the point I was at before I had my intervention than I am of dying. I guess having had a cardiac arrest has given me a bit of an insight into what that’s like, and assuming it will be quick like that I’m not scared.

I’m sorry to hear this OP. My father is in heart failure, with cardiac cachexia which has a poorer prognosis.

May I ask - did you have any inherited heart issue? If not, do you know what triggered your heart failure?

You say your heart is not a normal shape - I’m wondering if that was inherited or its shape has been distorted by the heart disease.

My father had a mitral valve repair 25 years ago which has held remarkably well. He subsequently experienced AFib and AFlutter, had an ablation. It was a matter of time before his heart eventually started to fail.

I have my own minor heart issues that I think are probably inherited. The male members of my father’s family all dropped dead between 60&65.

So I’m interested in the genetic background to heart issues.

Did your lifestyle contribute to this? How old were you when you were diagnosed?

Mine is genetic although I am the first one in my family to show symptoms. My parents aren’t interested in being tested, they’re in their 70’s now and figure that they’ve been through their lives without knowing, so they’re happy not to know.

With hypertrophic cardiomyopathy most people live symptom free, however in some instances it just happens that something triggers the symptoms. When you hear of athletes dying suddenly for instance that is almost always caused by a cardiomyopathy they never knew they had.

Nobody has suggested why my heart shape is different. They’ve just said that it is. Because of that though I’m not able to have ablation or any of those kinds of procedures which is why my next port of call will be transplant if things go wrong.

I was 42 when I was diagnosed. No lifestyle issues there, it’s genetic.

I caught the flu and the virus attacked my heart and I had endocarditis and sepsis. The HCM was diagnosed then, and the rest happened because of the flu but were made worse by the cardiomyopathy.

My mother died of heart failure aged 86.
They thought hers was caused by an infection of scarlet fever as a child. She had mitral stenosis. It didn't really cause huge problems until her later years but was distressing at the end.

Very interesting OP, I’m sorry to hear it, thanks for your response. Do you think your heart was more vulnerable to infection due to the genetic defect or was it bad luck?

@DontGoBreakingMyHeart That must be tough, you’re still so young too sepsis on top of it all must have felt like a slap in the face! I won’t pretend to know a lot about it, my gran had heart failure then passed away from a large heart attack, my granddad was the same. Was rather hoping it was a lifestyle issue that could be fixed if it was caught early enough as my DMum is now having issues with her own heart (though refuses to go to the doctor)

Thank you for this thread. There is a strong genetic link to heat disease in my family and this has been reassuring.

Best wishes. Please may I ask if there is a good balance for exercise and what that involves.