Newly diagnosed cardiomyopathy

[Stonecold619]

Hi everyone, I am 35 and have recently been diagnosed with dilated cardiomyopathy. I still need to have an mri done. Prior to this I had svt and have had 2 heart ablations they think it’s the svt that’s caused the heart failure. Apparently my hearts fraction is 22/25 % enlarged and leaking valves. I’m on drugs for this which have made me feel better but as you can imagine totally wetting myself as I’m classed as high risk I have two young boys and am very over weight which I am trying very hard to lose especially now. Sorry for the long story but just wondered if there’s anyone else out there with a similar diagnosis that could offer and advice or reassurance thank you x

[Shar28]

Hello, my husband has DCM and I know what a huge shock it is for you and your family when you’re diagnosed with something like this. Have you looked at the Cardiomyopathy UK website? It’s really helpful and they have a free pack they can send you. Please remember that a normal Ejection Fraction is 55-60% or so and it’s not the be-all and end-all of heart performance and how you feel. My husband had a very leaky aortic valve which was replaced - they call it “major but routine surgery” - but it feels scary when you’re waiting for it to be done. He’s nearly 2 years on from his DCM diagnosis and a year after his surgery and doing very well. His Mitral valve was leaky too but the drugs fixed that issue. There’s lots of help from people on this forum and the BHF and Cardiomyopathy UK nurses are fantastic when you call them. I’ve spoken to them several times and they helped get his medication sorted out post-surgery which made the world of difference. The best advice he had was from a hospital doctor when he was first diagnosed “It’s important not to do too much but it’s just as important to do enough too”. Hopefully your MRI will provide more clarity and a way forward. All the best for the future.

[Stonecold619 in reply to Shar28]

Hi shar28 thank you so much for your reply I just feel like I’m going to drop down dead I know that sounds very over the top but it’s eating me up... I’m trying so hard to stay positive xx

[Teddy66]

Hi

Sorry to hear your news it’s a lot to get your head around “I know” I was also diagnosed with Dilated Cardiomyopathy at the age of 35 that was 14 years ago, I’ve learnt it’s more about how u feel rather than your EF. The cardiomyopathy website is good and they have nurses that you can ask any question and they will get back to you.

Take care of yourself.

[Stonecold619 in reply to Teddy66]

Thank you teddy66 it makes all the difference talking to people that are in the same boat xxx

[chrisbattle]

Hi

Sorry to hear your news, diagnosis is a tough time. While I note your comments to Shar 28 about being scared of dropping down dead, this is much, much less likely now that you have a diagnosis and are receiving the right treatment.

Totally agree that the cardiomyopathy.org website and facebook group are great places for information and support. Please do not google anything as any information you find will undoubtedly be wrong

I suggest a couple of things

speak to the nurses at BHF or Cardiomyopathy.org, I am sure that they will set your mind at ease.

keep a list of any questions that occur to you, so you can ask your doctor or specialist nurse.

check to see if there is a local support group near you, and speak to others that have CM

Ask your doctor if you can do cardio rehab (it is probably too early and too close to your diagnosis yet, but plant that seed!)

I was diagnosed with DCM in August 2018, with an EF of 15%, believed to be caused by a virus. After a further check up at the end of January, the EF is now at 35%. hopefully, this will continue.

However, the way you feel is as important as your EF - some people have a high EF and lots of symptoms, and vice versa.

Good luck and let us know how things go

Chris

[MalarkyClarky]

I’m new to I this community but have lived with Cardiomyopathy for 4 years now and a subcutaneous defibrillator. It’s never needed to go off! I’ve kept up exercise but have needed to watch my heart rate. Walking seems to be the best way to keep healthy. If it gets a little tedious down load podcasts and books to listen to, you’ll be amazed how far you walk when distracted by a good story. Wishing you all the very best! AC

[Wellington19]

Had cardiomyopathy for 12 years ,also now stiffening of the aortic valve ,find shiatsu hellps