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

I agree Sallystrawberry, other than the gp getting his blood pressure checked, what else can he do. He needs to see his cardiologist. All this extra stress regarding shifts can't be doing him any good.
Noddyholder, what type have you got?
Fingers crossed Misdee.

I was diagnosed initially with HOCM but now the doctors are saying I got the thickened left ventricle from having high bp and being on dialysis before my kidney transplant.None of them can agree as there is no history in my family.They are 100% sure I had it when I had my ds and have advised that although all cardio pregnancies are high risk the outcome is good.I am waiting for my appt in 3 weeks to discuss this further.I am on meds at the moment and my consultant won't even discuss surgery at this point as he thinks my condition could stay as it is

Sorry noddyholder I remember your circumstances now, we spoke briefly before, my name was origianlly swilt, but that was my nickname at school so thought it was best to change it.
You're very similar to me, I have hcm, the only one in the family. But I read the other day, that as the carried gene is dominant, it never misses a generation, its just that not every one has the physical signs of HCm, but carries the gene for it. So unless you're immendaite family has had a blood test to see if they have the gene, an echo, ecg, might not actually diagnose it. As for pregancy, I have the same concerns, I've done it once, like to do it again, but ????

oh sally. that must be hard for you.

i have to speak to the GP soon about screening programmes for the girls. not something i am looking forward to.

dd3 has also got to have a scan done on her kidneys and bladder when she is 11 weeks old, and a hearing test as well.

oh sally thats a worry isnt it. hope they get it under control with meds.

what medication does your dh take? is he stable for now?

re-apply for DLA. have just re-applied for dh as he cant look after himself anymore, and we're hoping they increase that to high rate (was on low), he gets the high rate mobility part already. it took 3 applications to get that.

there just isnt enough cardiologists............

Sally - sorry that you have all this worry - hope the ACE's do the trick at least for now. Dd has just had her dose doubled and does seem a lot less tired at the moment. And she's put on 3 lbs after having not put any weight on for 18 months.

sally i hope you have a prepaid cert for your dh meds. i know if we had to pay for dh meds it would cripple us for payment for each item.

dh isnt too good today. his stomache is swollen as well as his feet and ankles. he is also coughing a lot. all signs of water retention caused by heart failure. he is going to ring gp and harefield in the morning to see what needs to be done. not looking good tho is it?

here ya go prepaid certificate for perscriptions

thats ok. i now how draining perscription charges can be.

dh is shattered. has been asleep most of the day.

how is everyone doing?

what r the general symptoms of this????

janbo, there are different types of cardiomyopathy and many symptoms. are you worried at all?

hi yes slightly symptoms being Hi, I had my ds 6 months ago and ever since then I've not felt 100% I've always had some sort of achy pain in my chest but a blood clot as been ruled out and I have had an ECG which to appeared fine. However my ESR as remained raised apparently although not highly significantly only around 27 - 30. I also feel like i get heart palpatations now and again and cramp in my left arm, I'm not sure but think it may be worse whilst I am on my period, I am due to see the consultant later today but just wondered if anyone else has felt similar or any thing???

Hi Janbo.

For a good majority there are no symptoms, sometimes it will be discovered from a routine health examination, sometimes a heart murmur can be heard. In my case I had many troublesome palpitations. Also shortness of breath can be a symptom along with tiredness, dizziness, or more seriously blackouts. Do you have any concerns yourself?

ask for an echocardiogram to be done. dh was detected with an x-ray and echo confirmed it.

I think raised ESR can be a sign of inflamation somewhere. I've never known it to be linked with cardiomyopathy. Yes, an echo is the best test, an ecg might not necessarily pick it up. But do realise this is quite rare.

Hi Misdee, I hope all is going well with you and Peter