undergoing tests and terrified

[emilyf123]

Im 34 my mother had a diagnosis of cardiomyopathy and it was found to be genetic. Ive an ecg and ultrasound on my heart. Before the ultrasound on my heart The cardiologist terrified me. He kept saying the prognosis isnt good for some one your age and you have what your mother have. He kept apologising and saying he wished he didnt have to tell me this. I suffer badly with anxiety and was so scared and confused. I got a letter for the results of the ultrasound and it said there were audible gallops on my heart (I was terrified after the first conversation with the consultant). but it did say the wall thickness and depth were normal. Im so scared I dont know what any of this means. Im scared I wont be able to live a full life because of cardiomyopathy

[Zemer]

Hi Emily, this is a lot of worry for someone of your age. I am confused if the Cardiologist is saying this to you because they have diagnosed this condition or that up ahead if you have that the prognosis is not good. I think at your age it is hard to question but you need to ask what exactly have they found. He shouldn't be terrifying you like just spouting off all the things that could go wrong. What is the treatment? There must be a treatment medication to steady the beats of the heart or does it require a pacemaker? Maybe someone can go with you next time to ask the questions that you need answered. Wish you all the best Heather

[emilyf123 in reply to Zemer]

Im still going through tests this was just after a test where they measured my heart rate

[Shar28]

Hello, have you discovered Cardiomyopathy UK? They’re a charity like BHF but specialise in cardiomyopathy. Their website is

cardiomyopathy.org

They also have a nurse-led helpline

0800 018 1024 Monday to Friday 8:30am to 4:30pm.

Both the website and helpline are wonderful. I’d suggest ringing the nurses to tell them about your situation and they’ll explain, guide you as to what questions to ask the cardiologist and support you and your family.

In the meantime, if you haven’t already you may find it helpful to explore what help is available for your anxiety. Your GP is a good starting point for counselling and medication, if appropriate. Anxiety really is the pits and it’s hard to deal with. Hopefully as you find out more facts about your own condition and what it means for you, you’ll be able to settle and move forward constructively.

All the best to you and your loved ones.

[SarahJLD]

Do join cardiomyopathy U.K. they have lots of useful information, helpline nurses and peer support.

Yes some people do have to adjust their lifestyle after a diagnosis but others find the condition well managed and live a normal life with a yearly check up.

You say your mother has the condition. When was she diagnosed? Are you being screened because she is recently diagnosed?

[emilyf123]

Yeah its because of the genetics. Thank you all for being so supportive. Its frightening but I've talked it through with my mother and she only has it mild. And with treatment she is improving. Im going to look after my health and hopefully my condition won't become severe..its really nice to have a place of supportive people to ask questions

[Wellington19]

I have had hypertrophic cardiomyopathy since 2008 also stiffening of the aortic valve quite hard walking up hills

[Matt1975]

I am 44 and was diagnosed with dilated cardiomyopathy in May. Have lost some weight, my diet is better (i do have a cheat now and again as i dont want to live like a monk!) and find my ability to exercise is pretty good, if not better that it has been for years. It is hard to deal with the thought that it might get worse and does play on your mind, but as things stand, apart from changing my lifesyle and taking a few tablets. I carry on as normal and am fitter, so i try to think of it as being the shock i needed to get myself back on track from a health point of view. I know its easy to say, but try not to worry too much and do what you can to keep yourself fit and healthy, and if you do find you have it take the medication.

Good luck.

[emilyf123]

Thank you everyone this has made me feel better. I go to the gym and have no issues with blood pressure etc. The letter I got after my ultrasound said my heart wall thickness was normal. I think possibly I had a consultant who was very unhelpful and didn't explain anything properly and used words that were scary. Im just going to look after myself properly and there are always things they can do to help my health like medication