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

hi, I'm misdee's sister and she is in hospital atm. My friend had a little boy with HCM, but sadly he died when he was 4 months old. My friend does wonder if another baby would have HCM, if the were to have another baby, and she has been told that is a high chance.

Hope Misdee and her dh are doing ok, I've kept track on that. Shes certainly got alot on her plate.
Oh how sad, and so young, how did the parents cope? Is she likely to try for another baby? Did the parents have HCM as well? Questions, questions, questions!

I'm no expert but I might be able to help, I've read a fair bit about DCM, speak to you later then.

No, Daniel's parents don't have HCM. It was a huge shock to everyone when he was diagnosed at 6 weeks old. Em was told that if Daniel made it to 18 months, he could be put on the transplant list but he never made it there His heart muscles thicken very fast and he died very quickly in the end.

They have been trying for a baby since soon after Daniel died, so about 3 years now, but because em only has one tube it hard for her to get pregnant. I have told her to go to the doctors as she would be able to get IVF on the NHS but she doesn't listen

Did Daniels grandparents have HCM? Only asking because if the parents and grandparents didn't have HCM, then I would have thought it was a sporadic case, and not genetic.

Hi Macwoozy

I went into hospital to have DS and left with two pieces of information.

1. You have Post Partum Cardiomyopathy the Americans call it Peripartum Cardiomyopathy.

2. You can not have any more children

I take Losartan and Aspirin daily and go to the gym several times a week.

It is strange in that I can do a work out in the gym and I feel perfectly fine, hot sweaty,heart working hard but I feel fine. On the other hand I can scoop up DS 3.5 and dance around the room with him and be out of breath.

It is extremely rare, so no surprise that I picked it up then

no, I don't think so, I met Em in hospital when I was pregnant with Dd2 and she was pregnant with Daniel, I remember Emma being on the moniter and Daniels heart rate speeding up to 200b/m and noone was bothered by it

LGJ, that must have been a terrible shock for you to hear that. Although I've heard about it, I've never known anyone to suffer from it. Did your heart improve at all after the pregnancy?

200bpm , I know babies hearts beat faster but surely thats way to fast to not be concerned

It reduced dramatically in the year following DS birth, but there is a part of it that refuses to reduce.

I truly believe that joining a gym immediately and going regularly helped.

I was adamant that I wanted another baby so I sent the consultant off to do some research. He came back with the information that he had a colleague who had a patient who for the want of a better word defied him.

I was listening intently and my heart soared when he said she got pregnant, he carried on....she went into labour at 24 weeks and had to have an EC

My mind raced ahead, 24 weeks not ideal but doable, and then he dropped the bombshell.....that she and the baby and the baby died on the table.

I decided there and then, that DS needed a mummy more than I needed another baby.

It still bothers me, particularly after too much wine, I don't get maudlin just find my self thinking what if.

You are absolutely right, your ds does need his mummy, but that doesn't make it any easier for you does it. I feel sad for you, as I'm wondering if having another baby is a wise thing to do in my circumstances but at least I know another pregnancy is not going to endanger my life.

Hi. In HCM the muscle of the heart is substantially thickened, but in DCM the muscle is more floppy.

Did your dh get DCM through a virus or is it genetic?

My dd has cardiomyopathy, thankfully because hers was aquired due to her other heart problems rather than genetic, it has improved. Initally she has an ejection fraction of 9%. She takes aspirin and enalapril.

The fact that she may never have children has always been a source of sadness to me.

As your dh got diagnosed at a later age, does that make the prognosis better for him, or does that not make a difference. How worried are you for your children? Or is that a bloody stupid question. It keeps me up at night worrying for my ds and he hasn't even been diagnosed yet. My ds visits Great Ormond Street every so often but I'm going to dread the day if and when he's diagnosed. Sometimes I just get so paranoid about it that it just engulfs me with anxiety. It must be so hard for you to watch 3 family members suffer with this condition. How on earth do you cope?
Potty an EF of 9%, Thank god she has improved, is she alot better now or does she still experience any symptoms?

wow, i never realised it was so common, my first dh died suddenly of HCM. and i'd never heard of it before. ds and dd were 4 and 2 at the time. ds has been tested three times and been clear so far, so much so he has been told (at 9) not ot come back til hes 15 or so (hes now 13) does that sound right to you guys? dd has been tested twice, and is due another test, frustratingly I have to go and push the dr to arrnage one and not them contact me. i'm more than alittle nervous. she is 10 now. i dont seem very good at organising the tests...guess i am 'putting it off' incase its bad news.

macwoozy - she is pretty well - doesn't quite keep up with her friends but that's as much to do with the other 'hearty' things she has going on.

At the time I didn't understand just how dire the 9% was - that was probably a good thing I think. How old is your ds? has he had any tests yet?

I hope your appointment goes well tomorrow.

Dramaqueen, I am really surprised that your ds is not tested every year, what hospital do you go to?

Thanks Potty, my ds is almost 5, he had a foetal echo, then one at 1 years, 2 years, 4 years, and his next one is when he's 6. Then it's going to be yearly.

Dramaqueen, the last thing I want to do is alarm you but sudden death mainly occurs between the ages of 12 to 35, and alot can be done with medication to help prevent this happening. I'm no expert but I would strongly advise you to get him tested more regularly.