Chat about cardiomyopathy?

[macwoozy]

A while ago, the subject of cardiomyopathy came up, I think it came up on Misdee's thread about her dh. I found that quite a few of you suffered from cardiomyopathy or had a relative who did, either dilated or hypertrophic, and I wondered if anyone wanted to compare notes. {I was a new girl then but since changed my name )
I have hypertrophic cardiomyopathy and it would be great to talk to fellow cardiomyopathy sufferers, how it affects them daily, when and how did they develop it, what medication they are on, if any, and if their children are affected. This is my biggest worry, that my ds will develop it, its a 50% chance. All this is particularly on my mind at mo, as I have an appt with my cardiologist tommorrow and I always worry about what will be said.
Anyway just thought that somebody out there might want to chat about it

my main symptom seems to be rapid heart beat and palpations which seem worse whilst on my period i also have cramp in my left arm, however i am not dizzy, tired etc?? what would an ecg pick up??

An ecg can pick up any electrical disturbances in the heart, and many ecg's are abnormal in cardiomyopathy. But unless you are getting palpitations during this short test, that won't be picked up.

i'm just at a loss as to what this can be??

all i can say is speak to the GP. if your are suffering palpations regularly then a 24hour holter monitor may be suggested. tho Peters neither picked up anything abnormal.

Peter is doing well, he had a blood clot in his leg last week and something like a mini fit on saturday, but his recpovery from the VAD op has been outstanding. he is doing better than anyone expected, but still hasnt been able to do his physio and get to standing because of the small set backs.

ok well i'm at the consultant today so will mention it

Janbo, I hope the consultant can give you a few answers today, remember though cardiomyopathy is fairly rare. I do know how frightening palpitations can be but anxiety can actually cause plapitations itself. Good luck

Misdee, what a huge battle you've both been through, but excellent news that he's coping well with the VAD.

I had a normal ecg and was sent home with 'new mother you are anxious'only an echo revealed my heart condition DONT BE FOBBED OFF!I suffered for 2 yrs and thought I was going mad

PPDCM is very rare. and if ui do have it, dont go hunting the net on your own, loads of sites are very out of date. we can direct you places.

what condition is that you have noddy?

erm, u are mad noddy

i'll report back later

thanks misdee don't tell everyone!I have hypertrophic cardiomyopathy (HOCM)

well seen consultant earlier, he's took some more bloods and i'm going back to have a chest xray, ecg, 24 hour tape & treadmill test is this normal?

Yes, that's perfectly normal. The holter will pick up any palpitations over a 24 hour period, the only small drawback is that it can be unconfortable to wear in this hot weather, I find the pads really irritating and I'm always desperate to itch.
The treadmill will determine how well your heart functions during exercise, and again will pick up any palpitations. X-ray and blood tests are rountine. So looks like they're taking good care of you. Let us know how it goes. Good luck

will do just a matter of waiting now, my esr is still slightly raised which i don't know whether this means its connected??

no idea if its connected. they will be looking at your ejaction fraction (EF%) during the treadm,ill test, its how well your heart works at oxygernated blood (think thats right, anyone cancorrect me if i am wrong). normal person with healthy heart is around 50% IIRC. I know that peters was at 30% last year, but no idea where he would be atm.

i have to see thr docs about getting mykids tested as well. cant face it atm.

ty for all your advice, at least i am going to be tested now and hopefully everything is to get sorted.

Misdee I hope your dh had a stable and peaceful night. How's your dh sallystrawberry?

God I worry so much about the possibility of my ds being diagnosed with HCM. His appointment is in January and I just know I'm going to a bag of nerves come Xmas. I really need to put it in perspective though, a diagnosis doesn't necessarily mean a bad prognosis, IYKWIM. I'd be watching him like a hawk when he's running around though. Even now I'm paranoid, he explained to me that his heart was bleeping the other day (he's 5), I automatically thought that he was having palpitations, but of course he's just describing the normal beating in his heart. If I could buy an ECG machine to test him every month, then I would. How's that for a neurotic mother

to say this condition is fairly rare there seems to be a lot of people on here who suffer with it!! quite scary really

Janbo there are many different sorts of cardiomyopathy, my dh is quite rare as they 'think' it was caused by a virus. but they cant be sure as the tests came back inconclusive. he has dilated cardiomyopathy, noddy has HCM, which is more comman, LGJ/Mrsgordonramsey (whichever name she has now, cant remember) has PPDCM. they is also a few others.

now i'm even more confused!!

what did the doc say?

There are 2 types of HCM I unfortunately have HOCM which is the type where there is also an obstruction aswell as thickened and weakened muscle there is an obstruction(hence the o) which makes it difficult for the blood to flow from one side of the heart to the other and a bit leaks back causing breathlessness.The non obstructive one is HCM and is v common some people have it all their life and never know and it is easily controlled with medication I too am amazed by how many people have it but it is strangely comforting and medicine is advancing all the time so I tend to look on the bright side or maybe I'm just foolishly deluded Either way i really believe in fate and just live every day and get on with it!I may need a transplant one day like Misdee's Peter and so every day that I don't is a blessing keep us posted on how you are xx