Dilated cardiomyopathy

[Choccybun]

Hi Folks, I recently went for an echocardiogram, where it was explained that my heart is weakened and enlarged. Iv3 now been told I have dilated cardiomyopathy, this is quite a scary time, just wondered, if anyone on here has been going through the same experience, and how they felt about it?

[Wodney1966]

I've got it had to finish work through it just got to get on with it n keep taking my meds lol and enjoy life

[IanMK]

I was diagnosed with DCM, LVSD & Heart Failure in autumn 2017 at the age of 62. It’s been long journey, but I’m just emerging from the tunnel after having a pacemaker fitted 7 weeks ago. I’m quite active and feeling much better. Now 64, I’m in the fortunate position of being able to consider early retirement. I have a desk job that is no good for my health at all.

While it’s an understandable first reaction, there is little reason to be scared as excellent cardiac care is available. Avoid using Dr Google as his training is out of date. Emotionally, you may feel that you’re on a rollercoaster but this site is very useful to help keep you grounded.

Best wishes

Ian

[Vivi2711]

Respected Choccybun,

Dilated cardiomyopathy can be kept under control, could be recovered or even be reversed provided we scrupulously follow the medications and life style modifications as advised by a good interventional cardiologist.

Cut down on salt, follow fluid restriction if imposed, be on a regular exercise regimen as advised by the doctor and be stress free.

It will take a little time but will certainly improve.

All the best.

[Shar28]

Hello. My husband has DCM. He was diagnosed a couple of years ago, just shy of his 55th birthday. It really is a scary time for both the patient and then if family, but it all settles in time as your meds take effect, you have reviews with your Cardiologist and you get used to a new normal. Life may change but that doesn’t mean it’s not good because it is, just a bit different.

We find the Cardiomyopathy UK website really helpful. They have a pack they can send you by post for free, loads of information, local support groups and a nurse-run helpline. Their nurses, like the BHF nurses on their helpline, are excellent. Here’s the link:

cardiomyopathy.org

0800 018 1024

This forum is great for receiving and giving support, asking questions, sympathising and empathising, having a rant or a moan and finding out lots of heart related information. Please fell free to shout out as and when you feel like it. The BHF nurses are on hand as administrators and on their phone helpline. 0300 330 3311.

All the best.

[Fismith69]

Morning! I was diagnosed with DCM Feb 2018, l was 48 at the time and I found it quite overwhelming! But once I was medicated I felt like the old me again! I had a few months off work but now I’m back full time, I try and get to the gym twice a week and rest up a bit on a weekend. I’ve recently found out that just after my diagnosis I’d had a stroke, fortunately the only thing I was left with was slightly impaired vision in my right eye so I feel another journey beginning but I still feel fortunate that I’m here and ticking along quite nicely, it’s probably not going to be always like this but I take each day as it comes xx

[iamkenneth]

Hey,

I was diagnosed with DCM LVSD back in March after I suffered an out of hospital cardiac arrest, I had to be resisted and had to be defibrillated back. After 4 weeks in hospital, dual lead ICD fitted I was sent home. That’s when the real recovery starts! I suffered massive panic attacks and anxiety issues, loss of sleep, weight etc. About 90% of my day was spent looking on the internet and worrying about our condition. But In three short months I’m feeling so much calmer and better.

Speak with your cardiac rehab team, cardiac nurse or consultant and explain how your feeling, they will help you! I’ve had counselling, exercise rehab sessions, icd checkups allsorts and speaking with friends and family helps as well, they will all be there for you, as well as people here. My first few days/weeks this forum was a god send.

I had my recent echocardiogram and ecg and results show my Ejection Fraction is at 40-45% (I was 33% three months ago) and the dilation has gone down a little. So the right treatment and meds goes a long way to help getting you better!

I realise everyone is different and we cope in different ways, but please don’t sit in silence, speak out and get the held you need/want. You’ll get there In the end I promise, its hard work but it’s worth it.

BHF have loads of great reading material online as well as sent to you by post if you wish.

Also cardiomyopathy.org is a great source