Cardiomyopathy

[csrehman]

Hi, Is anybody here with hypotrophic cardiomyopathy. Mine was diagnosed 11 years ago but was limited to left ventricle, in recent scans the whole of left chamber is now affected and they found scarring of the heart due to its progressive thickning. Has anybody been able to control or slow down the progression? I am 54 and doctor wont say how many years I've got before the scarring reptures or the chamber simply becomes too narrow to sustain life. Any advice?

[Love100cats]

Just the sort of info I'm looking for. I hope we get answers.

[csrehman in reply to Love100cats]

Hi, I've volunteered to a research project on this. Hopefully they will find a treatment soon. Did the hospital give you a SCD score? that helps to know the level of risk one may be in.

[Love100cats in reply to csrehman]

No nothing from hospital. Discharged to Arrhythmia then heart failure and now discharged from all and back to g.p. A vicious circle because I know I'll be back again but I suppose it helps with numbers! Sorry sounds negative!

[Dickydon]

Unfortunately and sadly my sister died from this exact problem complicated further by Type 1 Diabetes 18 years ago at the age of 42. I was hoping that 18yrs on there may have been medical advances with this type of Cardiomyopathy and that peoples’ longevity has been improved hopefully.

BEST OF LUCK

[csrehman in reply to Dickydon]

Thank you for your information. There are no treatment options except a heart transplant but that too is complicated by the body accepting new heart and may start to traet it is it did the old one i.e. cause thickning or scarring. They have tried to cut out the muscle to decrease narrowing but the heart cell are trained to return heart to same position.

the can now better predict Suddent Cardiact Death -SCD score, i.e likley hood of collapse within 5 year. Mine is 2.47%, it can go as far as 10% before certian death or paralysis, in other words I am in low risk over next five years (baring any changes in condition). I don't understand why 10 is not taken as 100% . I think 2.47% is same as 24.7% risk but not sure.

Do you mind me asking if other members of family were tested because i am told the cause could be genetic.

[Dickydon in reply to csrehman]

Thanks for replying. I had a heart attack albeit a mild one last June and a Pacemaker fitted in August last year. Must admit, I don’t feel great a year on nearly either. They never fitted any stents as my arteries were quite clear even at 58yrs old; perhaps being a non smoker or any alcohol helps.

However, I did have an MRI scan last July at the Hammersmith Hospital to check for any Cardiomyopathy and none was detected, but a leaky Aortic Valve was and they’re trying to deal with that through medication rather than unzipping surgery thank goodness.

I, like my sister was, a Type 1 Diabetic and her diabetes wasn’t as well controlled as mine, so that heaped more problems for her and her heart health. I’ve had Diabetes for 43 plus years.

My father had heart attack and a stroke in the early 1980’s but no Cardiomyopathy. So it does seem though, that heart problems are significant in the family and certainly on my deceased father’s side.