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

Please do bear in mind Janbo that Hypertrophic cardiomopathy (HCM/HOCM) is only present in 1 out of every 500 people. I really don't think you should be worrying about this just yet. Dilated Hypertrophic cardiomyopathy (DCM) is rarer still, and the other one, restrictive cardiomyopathy is very rare.

I meant dilated cardiomyopathy, not dilated hypertrophic cardiomyopathy, I don't want to confuse you even more

blimey macwoozey you know your stuff!!,

macwoozey you forgot Arrhythmogenic Right Ventricular Cardiomyopathy.

dilated is quite rare and generally familirial.

Hello, I have just happened across this thread and I hope no-one minds me joining in. I can't quite believe that there are others out there going the same things as my family! My DH collapsed with heart failure 10 yrs ago, shortly after out 1st wedding anniversary. The diagnosis was idopathic cardiomyopathy brought on by an unknown virus.

Things were pretty desperate for the first couple of years, heart tx list etc. but then things started to improve very slowly and DH was able to go back to work part-time in 1997.

In 2002 our dd was born, bringing much joy to both of us. DH suffered a bit of a relapse when she was about 4 mths and was in poor health for about a year but is now (touch wood) more stable and back at work again.

Really amazed that after all this time I have found some others who are going through this too.

Jane

Hi

Glad you dh is well atm, and hope he continues to be.

Peter isnt too great today, very down. has been told that atm hardly any transplants are happenign due to lack of donors, so more LVADs are going ahead. atm on the unit there are at least 7 people with different LVADs. |Peter has also been told he is looking at at least 5month stay, but more l;ikely 6-12months.

my mother died 2 years ago and we agreed for her to be a donor

Hi Tyakit, great to hear from you. How do you cope with something like that?. Does idiopathic mean no known cause? Is it Dilated cardiomopathy? Excellent to hear how much improvement he's made, was that helped by drugs?

Hi all,

thanks for the welcome. Misdee is Peter your DH? Sorry to hear he is not well at present.

Macwoozy, yes idopathic means cause unknown and the diagnosis was dilated cardiomyopathy. On intial admission, DHs heart was so enlarged you could actually see it protruding from the chest wall. The x-ray was scary and the junior docs all looked frightened to death.

We were lucky that we were living in Oxford at the time and DH was treated at the JR which is a regional cardology centre. DH was part of a trial into the use of ACE inhibitors for heart failure patients and has remained on a similar combination of drugs (ACE, beta blocker, ++diuretics, digoxin) ever since although ha has been able to drop the warfarin.

As for coping - we just carry on as best we can. Sometimes the future seems bleak and scary but we have become good at living for the moment.

We are just starting to try TTC for #2 this month. It has been a big decision for us so please wish us luck and send some baby dust our way!

Oh dear - have I killed this thread?? Where is everyone??

Hi Tyakit, I couldn't reply as I've been in hospital getting an implantable defibrillator. I had pretty nasty arrythmias and now I'm finally free from them. Huge relief.
You mentioned that it was caused by a virus. Will this mean you won't have to get your dd tested? I had really negative thoughts about my ds getting HCM, but now I've got my ICD, I'm far more positive, so much can be done. I can't imagine what it must be like for you and your family, as my condition doesn't debillitate me, but I can empathise with the worry of the future.
Wish you all the luck, here is some baby dust coming you way

hi Tyakit

yes peter is my husband. he was dx with suspected viral dilated cardiomyopathy just over 3years ago now. we say suapected as the screening tests came back inconclusive, but that may have been thwy were done too late and the virus had left his body. His mum was told by a nurse o nthe day he was admitted to expect the worst, he was very ill. but 2 weeks later he was home. then in oct last year, 2.5years after being disgnosed he took a turn for the worst. he was admitted to a local hospital who wouldnt listen to us saying that he was showing signs of advancing heart failure, and he was in and out5 of there untill dec. then we took him to the hospital where he was diagnosed, who got him transferred to harefield. he was put on the transplant list in march, had 3 calls, but none suitable. he had an LVAD fitted earliert this month as he couldnt wait any longer for a heart.

thats a shortened version btw

hope your dh remains stable for years to come.

Hi y'all
my dh had DCM & we lost a baby to similar (23weeks in womb that is). Our dd (4) seems to be clear, but our ds (21/2) has something, maybe restrictive cardio . He seems to be doing fine at moment.

DH had transplant in Feb and is fantastic now. So for anyone waiting - its devestating to be told you need it, but once you have acepted that, grasp it with both hands, in someways it may be the best thing that ever happened to you. Hopefully like a 'normal' person after years of being ill.

This message is getting too long. Will post what I really am here about below...

On a recent check-up trip to Papworth, I read an article about a man who reminded me of my DH. My DH had a big heart from birth, but had only been on medication since about the age of 32. Even then he was leading a fairly normal life until suddenly developing heart failure last yr after about 7 yrs. He had several stays in hospital etc and soon we were told that he needed a transplant, and soon. Once he got on the list, he only had to wait 2 weeks, and that was after one false alarm!!Brilliant.

Anyway, the article I read was about a man from Cornwall who had DCM for many yrs before suddenly becoming ill last yr. He had a transplant at Papworth after being called 5 times! The article said his story would be shown as part of a series on donors in August. I've been scouring the web ever since and this sounds like the series:

'Life on the List' series of 5 progs mon-fri NEXT WEEK 7 - 7.30pm BBC1. About all sorts of transplants. Part of a week trying to raise awareness of need for donors, called 'DoNation' (corny name alert!), includes an interactive Holby City following Saturday where viewers decide who gets a transplant!! Various links on BBC TV schedules website.

Hope these progs will be of interest and raise awareness of transplants and cardiomyopathy. Get watching!!