HF and scared : Hi I may be facing a... - British Heart Fou...

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HF and scared

Seaguller profile image
10 Replies

Hi

I may be facing a diagnosis of heart failure. I have done some research and it shows that about 21% only reach 10 years of life post diagnosis. I'm only 42 and was fitted with a metal aortic valve at 15. Been fine for 25 years but now EF has reduced to 41%. Had an MRI in September but not heard anymore. Anyone living long time with HF? If so, how quickly after diagnosis were you referred to the HF clinics and nurses?

Thanks P

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Seaguller profile image
Seaguller
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10 Replies
Sunrise_ profile image
Sunrise_

Hiya, Have no experience of what you are going through. However, to be able to have some control over your medical referrals please get NHS App with blue logo ( but not Covid NHS app) . I set it up and have information of my GP appointments, plus hospital and potential wating list etc. You have to ensure that allow it link in with other services. I found this invaluable to get information of where my referral are at etc. Hope this may be helpful to you.

Good Luck!

LHDLondon profile image
LHDLondon

After one stenting 7 years ago after heart attack (aged 60), 2 open heart surgeries for valve repairs and replacement, and 3 ops for atrial fibrillation resulting in an insertion of a pacemaker, I can honestly say one can live with heart failure. It's an effort, and it is important to remain positive.

Small steps of increasing exercise and maintaining a level you can manage are important.

The British Society for Heart Failure has some useful information.Your cardiologist should be referring you to heart failure nurses in your area if they deem it necessary.

You're not alone, there is a community of HF patients. I was told to expect to be living well into my 80s. That was 4 (nearly 5) years ago. A few wobbles but basically able to cope.

Good luck. Stay in touch.

Seaguller profile image
Seaguller in reply toLHDLondon

Hi. Thanks for your reply. Were you told the HF was from the impact of the initial heart attack?

LHDLondon profile image
LHDLondon in reply toSeaguller

If only life were that easy. No....In fact I only heard the word Heart Failure After the second of my open heart procedures before my atrial fibrillation operations. It might have been mentioned before but I was so sh^t scared that I might not have noticed. Ejection fraction must be the factor in diagnosing heart failure but so must general condition of the heart. To be honest I've never paid much attention to figures, just go by how I feel. And I feel heart failure every day - just keep it under control.

ahk59 profile image
ahk59

Hi .I took heart failure about 8 years ago caused by chemotherapy.Was in hospital for 3 weeks had a few stone in fluids in me and could hardly walk so exhausted after about 6 month I improved now I'm really good and do my walks every day.I saw heart failure nurse within week of getting discharged after a few months was signed off from seeing them.And then no more cardiology apps.On lots of meds but they keeping me well.Take care

MissisF profile image
MissisF

Try not to worry. Mostly HF. Is in older people so the overall stats reflect that. There are lots of good long term outcomes when you’re on the right meds. Try taking a look at pumpingmarvellous.org.uk. Lots of info/help. There’s also a Facebook page.

Prada47 profile image
Prada47

Morning

My Heart Nurse said don't worry over life expectance with Heart Failure.

There is every chance something else will get you long before Heart Failure does !!! So you have to manage your situation, not easy but no alternative. From what I understand HF is not a long lingering death like some forms of cancer etc it is a very slow decline into old age !!!

Just edited this post

Heart failure is a very serious condition for some people, but for the many. it is part of the ageing process. I think I am correct in saying people with very serious HF are diagnosed when they are relatively Young

I sometimes get extremely short of breath but don't think it's going to kill me It hasn't done so far !! Medication is getting better all the time looks like a combination of Dap and Entresto is currently flavour of the Month

Happy Christmas and May You have many many more.

FiftyNotOut profile image
FiftyNotOut

My EF was 43% post STEMI in April. It was 51% before it (I’d had a routine cardiac MRI a week before the HA) and was 59% a year before that. I’ve found the drop very difficult to come to terms with. But I remain hopeful that medication, exercise and a healthy lifestyle can see improvements. Don’t forget that normal is over around 50%, so 41% isn’t as bad as it first sounds. I was reassured by my consultant that I don’t have heart failure - and I’ve also been reassured by others that heart failure isn’t as dire as it sounds!

Seaguller profile image
Seaguller

Thank you. Why did he say you don't have heart failure?

Seaguller profile image
Seaguller

Thank You. Why did he say you don't have heart failure?

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