Familial hypercholesterolemia Diagnos... - British Heart Fou...

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Familial hypercholesterolemia Diagnosis with a sprinkle of heart disease

HastingsD profile image
8 Replies

Hello ill people!

I am also now ill and while I was diagnosed with FH some 8-9 years ago, and have been placed on statins ever since. I have a good diet, lots of vegetables, fish, no readability meals, very few takeaways, mostly home cooked meals, etc

My brother has FH and in January last year had a quadruple bypass, which prompted me to get a CT scan which led to a angiogram and ultimately at the tender age of 47 having 1 stent and another two veins at 70% and 50% reduced flow.

Anyone out there with FH and CVD?

While I’ve known about my FH for some time the last year has been quite a shock for me and my brother.

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HastingsD
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8 Replies
FULLMJ profile image
FULLMJ

Hi HastingsD.

I'll be 60 this year. I have FH, was in the military and the police after that till retirement. My first procedure was at 37 with 3 stents ( a couple of months before my wedding). Since then, I've had 10 procedures and have 11 (maybe 12) stents. The most complicated procedure of which occurred in Nov 2018 requiring 2 cardiologists and over 3 hours. Highly unusual.

The short story is that there are many among us with multiple stents. Stress is a major factor. I'm essentially teetotal and a nonsmoker eating "clean" and now trying vegan (1 week in).

Try not to worry too much. Plenty of support here. These are now routine procedures.

All the very best to you and yours and may your 2020 be one of pleasant surprises.

Mark

Rob6868 profile image
Rob6868 in reply toFULLMJ

Wow you have certainly been through the mill.

But come through the other side thankfully!

Great strength of character

FULLMJ profile image
FULLMJ in reply toRob6868

Rob6868: More a case of “too lazy to worry overmuch” than strength of character, but thank you.

Rob6868 profile image
Rob6868 in reply toFULLMJ

I wouldn't say that after your long journey from the age of 37

At least your testiment that we all still have a future after a heart event.

FULLMJ profile image
FULLMJ in reply toRob6868

What you say is true. Any heart event is very worrisome, particularly the first time. Of course some are more serious than others but I would say, for me, the greatest risk factor is uncontrolled stress. Generally speaking, lifestyle changes (start gradually if you have several risk factors) provide some control you have over your health, not some random event that decides to choose you. Cardio related exercise will greatly improve your quality of life, even a 30 minute daily walk at your comfortable pace will help if you're consistent. Consistency is very important. There is always hope and always life. Choose to be positive, choose to be active. Don't choose to be a victim.

We on this forum will get you there.

HastingsD profile image
HastingsD in reply toFULLMJ

Hello FULLMJ

Thank you for your reply. I’ve read some of your other posts while going through this site before Christmas.

37 is very young. And so many procedures!

A few questions if your able to respond, as it seems your the only person to have responded with FH.

When were you diagnosed with FH?

And when did your start taking statins ?

What meds are you on now ?

For me at the moment I am a bit peeved, what with friends who smoked for the last 25 years, and then people I know who don’t look after themselves and are massively over weight, and here I am, good diet, slim, don’t smoke, with CVD. I have always liked a drink mind.... and at the moment still do, but I’ll try and cut down. Issue is I have a stressful job and that was my release.

I’ll get over it though! ..... I was in a road accident when I was 30, and while that is another story, I was left with a life changing injury. Sh!t happens.

That said I am finding it a worry what lays ahead for me, and my brother. We both have children and I want to see them grow up.

Thanks

D

NorthantsSteve profile image
NorthantsSteve

Hi HastingsD. I don’t have FH but at age 55 (over 3 years ago) had a heart attack out of the blue + stent. There was no way of seeing it coming as I don’t have any of the usual indicators and haven’t led a rock star lifestyle! I take the view that I’d been ill for a long time but didn’t know it and it was the heart attack that brought it to my attention. Since I started taking the meds, exercising more and eating better (never was very bad) I feel better than I have in a long time. And I don’t see myself as ill- more like someone who could be if I didn’t do the right things.

You’ve been really fortunate in heading off a heart attack at the pass. And it sounds as though you’re getting good medical support. Try not to stress about things but if it gets too much do talk to your doctor/cardio nurse et al. Hope you have a great 2020.

HastingsD profile image
HastingsD in reply toNorthantsSteve

Hello Steve

Thanks for your response. I am not sure that I have headed of a heart attack. Merely delayed the inevitable. So that is itself stressful at the moment.

My brother actually seems to be more at peace following his Quad bypass. That said his op was a year ago. However, I’m really not keen on that option of a bypass but feel like my FH means that ultimately this will be where I end up, no matter what i do..... along with the heart attack.

What did I eat today - dried fruit (mango), a couple of oat flapjacks, sushi, and when I got home from scratch a Jamie Oliver Super Food recipe - jalfrezi chicken curry. The curry was very tasty by the way and super low in saturated fats. Maybe I wasn’t trying hard enough previously, but my diet wasn’t that different before.

Ultimately we have no crystal ball, so it’s simply suck it and see. I’ll eventually come to peace with it. Just need a release! 👍

Regards

D

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