Cardiomyopathy

[MrsCampbellBlack]

My sister has just been diagnosed with cardiomyopathy (not sure what type yet) and I'm off for some initial screening on Thursday morning.

Does anyone know what the type of prognosis is for cardiomyopathy as my sister has been told very little - just that her GP will be sent details of what drugs she needs and if she gets any chest pain to call an ambulance.

Is this what generally happens? I'm just surprised she's been given no details of things she should avoid or advice on diet etc.

Thanks.

Not sure if I can be a huge amount of help MrsCB but didn't want you to go unanswered. My dd has a degree of DCM caused by a congenital defect.

Generally the prognosis these days is hugely improved; there are loads of new drugs which help to support the heart. The first step really is to find out which sort of cardiomyopathy she has and whether it's genetic or caused by a virus. They usually do some baseline tests to measure how well the heart is pumping; echo (ultrasound), stress test, maybe an MRI. Then it's a case of starting on the meds and seeing how things improve over time.

Some hospitals have specialist cardiomyopathy clinics so she mayget referred to one of those. There is a discussion board on the Cardiomyopathy.org website. They have a helpline too.

Hope your tests go well on Thursday

Oh thank you!

She's been told its the genetic type and has had the stress test where they put dye in your heart and make it beat faster - the consultant wanted to double check the results and then sort out drugs.

I'm not too worried - am pretty prepared that I'll have it too but better to know is my attitude.

Thanks again and I hope your DD is doing well.

My FIL has HOCM - and despite our initial fears at diagnosis, he has lived with it for over 15 years and still going strong. He is monitored closely, has excellent support from his GP and the specialist, and the family have been screened (and are screened every few years) because it's hereditary, but nothing has shown up.

Try not to panic, although I appreciate this is easier said than done

I don't have cardiomyopathy but didn't want to leave your post unanswered. I do have a heart condition (am recovering from surgery at the moment). I know how frustrating it can be when you have a rare condition, and doctors have a patchy understanding of it - I'm not talking about GP's, no-one could reasonably expect them to know everything, but hospital consultants should be able to answer questions.

It may be that your sister could be referred to a different consultant with a specialist interest in this condition. Perhaps her GP or contacting the cardiomyopathy association could help her find a more appropriate consultant. I was seen for years by a consultant with little interest in my condition - actually his registrars. When I was referred to an appropriate specialist, the difference was astonishing. She has seen me through two pregnancies, and referred me to the best surgeon for my condition when I needed an operation. It was great to be able to ask any question, and get an answer based on the latest research. It may be that she will need to travel for the best care to a teaching hospital, but it would be worth it.

Thats reassuring Hopenglory.

And interesting Madsometimes - its taken 5 months for her to be diagnosed as it was initially picked up via a routine ecg as part of a pre-op thing for something else.

Am hoping when she sees her GP she'll get some more answers as she's pretty young (37) to have been diagnosed with this I think.

Must say that I'm quite surprised at the lack of info she's been given - its just been so much waiting around.

And Madsometimes - I hope you're doing ok after your surgery.

My DH has DCM as the result of a virus he contracted over 17 years ago. He was very very ill initially and the first few years recovery were slow and scary but you wouldn't know there was anything wrong with him now. Drug therapy has come on along way over the time he has been ill and his condition is well managed now although he finds the high doses of diuretics a nuisance and has started suffering from gout as a side effect of his meds.

PM me if you want more info.

With hindsight my FIL could have been diagnosed years ago, but the Drs kept mistaking his breathlessness for asthma

Thanks MrsCB, I have learnt the art of delegating, but it has taken some time. My dh has stepped up to the challenge of looking after myself and the children despite me trying to micromanage things from my CICU bed. Actually I am much better now anyway. I am 7 weeks post op, so can do most things now. Let's just say we had a very quiet Christmas.

I hope your sister gets the information that she needs to feel confident to go forward in her life.

dd is doing fine thank you MrsCB. She's just been transferred from Children's to Adult services and has recently had the test you describe among others as they wanted to do all their own tests now she is considered fully grown.

Definitely contact the cardiomyopathy association if she feels underinformed; there is good care available out there but sometimes you have to seek it out.

Thank you all so much

Will update after my tests on thursday - have been told by my sil who is a GP to push for an echo as well as an ecg.

Yes definitely do that; the ecg is such a tiny snapshot.

My mum was diagnosed with Hypertrophic Cardiomyopathy last year after years of high blood pressure and palpitations. It is hereditary for our family and there is a 50/50 chance of my mum's immediate blood family having the condition.

I was tested-had an ECG at my doctors surgery and then an echo at the hospital. Thankfully I am ok which was a huge relief. I have a DS who would have needed monitoring if i had it. My brother is stalling over his tests as I think he is a bit worried about what it will mean if he has it. My mum's sister has also been given the all clear.

Have a look at this website - www.cardiomyopathy.org They have been a massive support especially while we were waiting to hear the results of my tests. Loads of fact sheets and information.

My mum's condition is stable and she is not receiving any treatment apart from medication for her blood pressure but other than a bit of tiredness she's doing fine. She sees a cardiologist every year for check ups.

I have HOCM. I was diagnosed 11 years ago when I was about to have some major surgery for something else. At the time we allfreaked out and I thought my number was up but with medication sensible diet/lifestyle I am fine and my consultant says it will probably not alter my life expectancy but my quality of life may be affected but so far it has remained stable and it is likely I had it since teens. All my family are clear which is odd and my ds.

How did you get on MrsCB?