Scared: Hi. I've was recently diagnosed... - British Heart Fou...

British Heart Foundation

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Hi. I've was recently diagnosed with Hypertrophic Cardiomyopathy and I also have Atrial Fibrillation and my LV EF is at 31%. I'm 45 years old with 2 children and was told by a specialist yesterday that I have 50% chance of dying within the next 2 years. I'm going today at 5.30pm to have Cardioversion to see if they can get the heart back in rhythm. As you can imagine I'm terrified of what the future holds and wondered if anyone had been in the same boat or could offer any advice? Thanks

8 Replies
DeirdreO_BHFBHF Nurse

Hi, i am so sorry to hear of your diagnosis. Good luck with your cardioversion this afternoon. We have got some useful information on living with Hypertrophic Cardiomyopathy (HCM) here

There is also cardiomyopathy UK, who offer a nurse helpline and patient support group to people living with HCM.

Pleases also feel free to give our genetic information service a call, where you can also speak to a nurse on 0300 456 8383.

Wishing you well

Regards Dee

Thanks DeirdreO_BHF for all the info above, I'll start calling and reading up. The Cardioversion seemed to go fine and my heart was back in rhythm when I left the hospital, I've got my wife checking every now and again but we're not 100% sure it still is. Onto the next stage now I guess. Not sure what that is right now.

skid112Heart Star

hi there, wishing you well and hope your cardioversion went well. I don't have any idea, aside from having read the links, of your diagnosis. You are in the best possible hands, please keep us informed of progress and look at the 50% chance of living. I know maybe trite words but I'm rooting for you

anderson100 in reply to skid112

Thanks skid112. Not trite at all. Got to focus on the 50% chance of living, just hard not to think about the opposite. The Cardioversion seemd to work but they don't know if it will last.

skid112Heart Star in reply to anderson100

Agree it's difficult at times not to think of the alternative and it's only human

Hey, we are all think of you & sending hugs of support.

I think you should think more on the otherside of the 50% lifeline. You have also got 50% chance of living on for many more years.

Take each day & make lots of happy fun day memories.

Nothing is an exact science in life.

Apart from all my adult health issues, which I genrally do let get me down, evan the heart stuff. I tend to say not today, not today.

But apart from that, I had a horrific road accident at 8.5years. Was read the last rights etc.

Wasn't meant to make it through the night. When they seen I was going to hang around for a bit longer. They said I still had just a slight chance of living. That opinion lastedfor a while, from what Ibwas told by family. They said I would probably never walk, talk etc. Took more than months, couple of years to learn the basics again.

Had to learn to eat, walk, talk draw.

Learn who these strange people were, who were calling themselves my family & friend.

More opps to come & they said I'd never be able to conceive.

Science said a lot of things about what I would & wouldn't do, well I guess they got that wrong, lol!!!!

I have physical scars of course, they don't really bother me, they're my war wounds, hahaaa.. But the worse scar, is memory. All of the above is info handed to me constintly over the years. I remember nothing of the actual accident or the first months in hospital.

I know I have gone on a bit, but just trying to explain. You have a good chance of things turning out better than you think. Good luck on your consultation xx

Thanks for the support says. Feeling a bit more positive now, last week with the initial news was a huge shock. You don't expect to be told you've got a life threatening heartbproblem at 45. Need to now just work through it all.

Bless ya, yep! we've all been there. And of course you are so very young.

Shall I tell you the difference?

You, bless you. You have found out at 45. A lot of us didn't find out till we were there. Till we were at the stage of were we really had no choice. We had to take the information & act bloody fast.

Take me for example, I had simptons a few years before I got it checked. I recon I was about your age then. I knew for a long time something wasn't right. But I was full of it & ignored my body.

Even on the day of my heart attack I walked about five miles to the hospital, a lot of it up hill. And believe me, when I say hill, ha, I mean hill. I was at the stage, they thought I must have arrived in an ambulance lol.

Listen my darling, a sure way of Kelling over & not making it, is believing it has got the better of you. It has never, ever got the better of you. Not now you are armed & know what you are dealing with.

Make sure you take a notepad to the conciliation with you.

If your wife/partner goes with you. Youbask the questions, but get hrr to write the answers down.

It really is all more scary than it need be.

You know when someone flys to Spain for example. They have heart history, on god knows what meds, they sit in seat E39. Then the guy next to them, 28 years old, saposidly fit as a fiddle, gorgious 6"1ich health freak, Jack the lad, full of it in seat E40. If there is a cardiac arrest on the fight, which guy do you think it is going to be?

I can tell you? Probably the poor guy who hasn't been diagnosed, that's who it is.

Honestly my darling, if you accept your predicament & your partner is on board with support. You are goingnto do ok if the BHF consultants are on to it, you're l as laughing. These guys are so intelligent in their field, so skilled & talented, it's unreal.

Those of us that have been through it, are so confident in the surgeon's capabilities it's unreal. These guys know what they are doing. So do I, they're saving our lives. And they'rr bloody good at it.

So I know you are scared, we've all been there, putting our lives in their hands.

But really, you are in duch hood hands. 6months/ possibly year from now, you'll wonder why you were scared.

Love n hugs from us all, Jo:)

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