Cardiomyopathy

[Kevsbar01]

Hi I have just been diagnosed with dilated cardiomyopathy yesterday with 27% ef. Can anyone tell me any more about this or give any advice on coping with it as I feel very vulnerable since being sent home from hospital ?

[Shar28]

Hello and welcome to the forum. It’s a huge shock when you get diagnosed with a heart condition and it’s entirely natural to feel very vulnerable. It’s takes time for things to settle down and get used to everything. Your life may change, but that’s not to say the changes will turn out to be negative. There’ll be ups and downs, but just take things one step at a time. My husband was diagnosed with DCM nearly 5 years ago. At the time his EF was just 10-15% but with meds it improved to 25% in a matter of months and has since increased to 41%. Remember normal is 55%-60% so your 27% is half of normal, not just over a quarter!

Have you discovered the charity Cardiomyopathy UK? They have a fantastic website that explains things really well and a brilliant nurse run helpline too. They’re not just there but patients but for their families too. Here’s the link

cardiomyopathy.org

I’m sure there’ll be other people on here with DCM who’ll be along in a while, in the meantime, please remember everyone on the forum is here for you. So, ask questions, rant, tell us how you’re getting along etc.

All the best to you and your loved ones.

[Kevsbar01 in reply to Shar28]

Thank you for reply means a lot an a relief to hear. Thanks again.

[Curlyman83]

I have dilated cardiomyopathy…I have an enlarged (saggy, apparently) left ventricle after an out of the blue cardiac arrest.

My EF was very similar to yours last Jan…but I’ve come on leaps and bounds since then. I’m back at work full time, enjoying golf (well, maybe not enjoying but certainly playing) and socialising when not in lockdowns.

It was quite a scary diagnosis at first, but with the help of my cardiac nurse and a very supportive wife and family, I’ve come to accept the fact that this has happened, and I can’t change the past, only the future.

I’ve been placed on a cocktail of drugs which seem to be doing a good job, as I’m feeling much better now than I was twelve months ago.

If your feeling confused, speak to your specialist, or your GP…my go to is my cardiac nurse…she’s brilliant. I’m assuming you have one of those??

[Kevsbar01 in reply to Curlyman83]

Thanks for the reply. I’m sure I will have a cardiac nurse. Just waiting on my post with what to do next. Do feel a lot better in myself after joining this an hearing replies. Thanks again.

[Eastwood25]

Hi, I know exactly how you feel, I have DCM went for an outpatient Eco and was admitted on the spot for 5days, aniogram then cardiac mri to confirm diagnosis- to say it was a shock was an understatement, that was back in July 2019. My ef was 22%, im on the normal meds, bisoprolol, entresto, spironolactone & Dapaglifozin which do help a lot. Last echo was Dec 20 ef 30/35% approx. I have an icd implanted Jan 20. I do have my boundaries but in general I’m ok, some days I have tired days for seemingly no reason but others are a lot better. Just take it day by day at the moment and give the meds chance to work their magic, hopefully you will get to see a heart failure nurse who I found invaluable, plus they’re always on the end of the phone.

[Kevsbar01 in reply to Eastwood25]

Thanks for reply. That’s pretty much exactly what happened to me. Was feeling pains for a while but thought nothing of it until New Year’s Day I decided to get checked out. I was rushed to another hospital for same checks as you and was diagnosed with this. I now feel a lot better since joining this forum and hearing replies . Thanks again

[Eastwood25 in reply to Kevsbar01]

Yes I know what you mean, I found this group when ist diagnosed and it was a massive help, to know that I wasnt the only person and that there’s hope. Just listens to your body it will tell you when to rest and be kind to yourself. Xx

[Silvasava]

I was diagnosed with DCM in 2020 but only found out last year. It was certainly a shock and I'm only just coming to terms with it. BUT, my EF is improving, meds have been changed and tweaked so I'm not feeling so tired and breathless. It takes a while but between my cardiologist and my heart nurse my quality of life has improved. I might not get back to where I was but I feel there are plenty of people who would change places with me. This forum has been an enormous and supportive help to me, especially in the early days so please come on here if you are worried or need information.

[Kevsbar01 in reply to Silvasava]

Thanks for reply. Feeling so much better since joining and hearing replies huge relief .

[Putterguy]

Hi and welcome to the forum. I like many on here was a fairly fit 65 year old, when I got what I thought was flu, by the evening of the same day I was blue lighted into the LGI, unable to breath and feeling awful. I was in for a week. That’s when I was told what had happened. The virus had affect my heart and that I had DCM with Permanent AF. Since then everything moved at a good pace really, Heart nurse visited within the first month of me being discharged( with an assortment of drugs), in fact her first visit was quite alarming as her first question to me was “so how do you feel about having heart failure”first time I heard this. Totally knocked me for a six. This a very poor term, so I don’t use this anymore as it is such a negative term. I have a heart that doesn’t quite pump hard enough and needs a bit of help. Since then ( now 12 months on) I have regular visits to the heart nurse, had a phone consultation with cardio consultant and had two face to face with heart consultant. My meds have been tweaked and still are. I am quite lucky that I don’t suffer with too many breathing issues but do suffer with tiredness.

The meds have allowed me a near normal lifestyle, I’m back in the gym rehab, I play golf( warm weather golfer) with a buggy now. I make sure I walk everyday ( whatever the weather) and I do keep up with my Med routines. Also eat reasonably well. I did stop drinking, but that was just for a lifestyle change, nurse said it would be ok in moderation.

The biggest impact was physiological, I just could not get my head around what had happened to me. So I initially went to see someone privately, until I went to the top of the list of the NHS waiting list. Seeing someone and talking through the lifestyle I now have has made a great difference to me. I couldn’t recommend it enough. I try and think positive thoughts, but still it gets me down yearning for my old life.

You need time to get to know who you are now, make sure you ask all the questions you need answers to. My wife has also had a massive lifestyle change as I am not the person I was 12 months ago. So remember it also affects partners as well.

I am looking forward to a long life, albeit not the one I envisaged. I still have worries, concerns, rest days( I don’t call them bad days anymore), but I do try and carry on as much as possible.

My stats when I went in was EF of 10-15%, after 12 months it’s now 25-30%, and I’m hoping with all the meds it will keep on improving.there are lots of meds and treatments out there.

My advice, keep off DrGoogle as most of the information is out of date, such as life expectancy, utter rubbish on there, get to see your heart nurse and listen and take it on board. Exercise as best you can. Take your meds. Go and see someone to help you get through the trauma. Whilst the cost privately is a bit restrictive (mine was £80.00 a session) I can assure you it was worth every penny. If you can get on the NHS waiting list do it straight away as your life has changed. Also give yourself time to take on board what has happened to you. Don’t try and rush through this.

This forum and also pumping marvellous is a great help.

I wish you the best for your future. If in doubt ask.

[Kevsbar01 in reply to Putterguy]

Thank you so much for taking time out to write such heartwarming reply. Means a lot thanks again. This forum tell has changed my view on things. So happy I joined. 👍

[Squeaker12 in reply to Putterguy]

Do you mean the COVID virus set your troubles off?

[Cacabeto]

I was diagnosed with EF 20% and the cardiologist had a two prong programme to follow: on the one hand he prescribed the normal medications already mentioned previously and on the other I had a pacemaker. After six months my EF had Goto 40% and next week I will find out it if has improved a bit more, hoping to reach 50-60% which is good for people my age.

[Wire57]

Hi kevsbar01Remember you are the same person you were before being told the news. Until Oct 2019 I considered myself to be a reasonably fit 62 year old, having completed hundreds of scuba dives on shipwrecks, spent approx 2hrs every other day at the gym, hill walking, cycling and playing a brass instrument never smoked and seldom drank alcohol. Then whilst out with my wife and friends I had a cardiac arrest, luckily we had changed plans and walked into a shopping centre rather than the sea front, the shopping centre had bought a defibrillator six days earlier. I came out of the coma five days later with no memory of anything to be greeted with you have severe heart failure with an EF of 10% and dilated cardiomyopathy. Luckily I’m a positive minded person and today the only things I don’t do are scuba diving and play a brass instrument (only because the cardiologist said don’t). I had a CRT-D fitted went on the usual mix of meds and I can honestly say I feel better than I have done in the last twenty years.

Don’t look on it as what can’t I do but more as an opportunity to try new things, last year I walked over 3,200 miles averaging over 8.5 per day, plus many other activities. As I said at the start you are still the same person you were before being told.

Take care, listen to the specialists, listen to your body and remember to quote Sir Captain Tom Moore “Tomorrow is going to be a good day “.

[uzininemm]

I can't add a great detail to what everyone else said, but you made the right decision in joining, over the last 6 months this site and these good people who post have taught me alot.As Wire57 says don't think what you can't do, but what can I do and what will I be able to do with time, the right treatments, exercise eating healthly (if you need ideas the recipe finder on here is brilliant). Yes you will have to re-evaluate your life, but that can be a good thing and a chance to try new hobbies etc. I wish you well.

[Dingledaw]

Among other sequelae, it's occurring in the 1.2M people disabled by Long Covid.