Cardiomyopathy

[mummyduff]

Since sept last year I have been having tests on my heart as during a routine pre op, they discovered things were not working correctly.
I am 37 and have 3 children. The cardiologist has been rather slack in getting me any results and as of today things have been referred to the complaints team.
I am really worried but do not want to say much as feels like Im going on, and to add to things my children also have to be tested too.
I have no idea how this will affect my life etc, but do know that I am classed as young to have this condition.
would appreciate any advice x

Can you be more specific? There are a number of types of cardiomyopathy - I suspect you mean hypertrophic cardiomyopathy which can be genetically determined.

Dear mummyduff
The cardiomyopathy association has a good website here
www.cardiomyopathy.org/
and a helpline with specialist nurses at the end of it who return your calls and are really helpful.
The diagnosis is made on the basis of at least an echocardiogram and a cardiac mri scan. The best way to get these done quickly is to a) ring the cardiac sec and make sure the junior doc/consultant has sent the request off and if not ask them (the sec) nicely to remind the doc and to fax the request through as you are really really anxious. Then b) be nice to the admin staff in the departments of echocardiography and cardiac mri and ask for a cancellation and give them your contact numbers for a cancellation and once done, when you are having our investigations, ask the technician and sec to very kindly send you a copy of the investigation reports. Then once your tests are done and you have your copies of the reports you could try ringing the cardiology sec again and ask for your outpatient appt to be brought forward to discuss the results.
My cardiomyopathy specialist is famous in her field and as a result is too busy and too uppity to have much time for real patients but at the end of the day everyone is human and that includes doctors from whom we expect far too much these days.
Hope this helps. Very tough time for you. Sympathy.

The genetics thing is really worrying I remember worrying about passing things on to my children and feeling really awful about it. But I would rather know than not.

If it is a type of cardiomyopathy you have developed 'early' then it is not congenital, otherwise you would have had it at birth.

As already stated, there are a number of forms, some inherited, some not. 1 in 1000 pregnancies result in a cardiomyopathy for the mother.

Stop googling. I know you have googled, we all do it, but stop NOW. You are allowed to go to the link posted by happy.

i am really sorry to hear that you are going through his mummyduff.
The advice funny has given is brilliant.i went through this a year ago and know what am anxious time it is and how you worry/feel guilty for yous little ones.
I spoke to someone at the cardiomyopathy association; a trained nurse who was v good.could verbalise all my concerns that i felt i couldn't with family.may be worth giving them a call.
Big hug and all the best.xxx

Thank you all so much for your advice, I have now been on the website and will be contacting the nurse specialist for a chat.
Sashh - I have now stopped googling ; ))