hey all,
I have recently been told I have a diagnosis of dialated cardiomyopathy and that my heart is working at 40% in addition to this I've had a small heart attack.
I am definitely overwhelmed but I want to make some lifestyle changes. I would appreciate some advice, I feel at a loss and don't know where to start.
thank you 
Start by not being too angry with yourself. I was 39 when I was rushed into hospital with a afib with DCM and then later on severe multi organ failure due to the cardioverson needed. Lucky to be here but you can't solve everything in a few short weeks but be as positive as you can as a mindset. 40% is not a bad start point to recover from and your relative youth will probably help with coping with medications.
I've gotten used to bring one of the younger posters but it can happen at any stage. Keep us posted on how you progress . We are always here for a chat or advice 😉
Thank you for your kind words ! I have been told before about keeping a positive mindset and I definitely believe that to be true. Thank you so much !
Dear Missjaay
There are four basics that you can do for yourself…
1. Work out how much sleep you need then ensure you get that nightly sleep.
2. Adjust your diet, including, if relevant, your weight. No need for crash diets etc, just
Edge your diet to sensible levels.
3. Attend relaxation lessons, keeping yourself calm.
4. Take moderate exercise several times eac week.
It took me many many months to get my four basics in place. But it paid dividends when I needed medical attention.
Good luck
Sooty
Hi Sooty
Thank you these are great starting points, I have been overwhelmed with information and with not knowing where to begin.
Sleep is always something I've struggled with so I will make sure that it is a priority!
Thank you !
Dear missjaay
It took me many many months to achieve decent sleep. My own requirement is 7.5hrs.
I changed my mattress, slept in the spare room for a while. Slept with a light on. Changed my bed time dramatically. Now I retire at 10pm. Used to be midnight.
I also purchased a tinnitus relaxer, which is great for getting you off to sleep. Costs about £30.
A lovely cat adopted us at the early stages and he gives me something to live for. He slept in our bedroom for a while, which I loved.
He also helped to reduce the night terrors and now I don’t even get night mares.
Best wishes
I have tinnitus, I will check out the relaxer. 😊 thank you for the advice
Excellent point. Not one of the health professionals explained that to me and I only found out much later by reading it on this forum. It helps your mindset when you realise that your ef is only slightly below what is considered normal rather than thinking that you’re only working at 40% capacity. 😊.
Hi, This is so helpful , because I literally was in a state of panic when I first heard this. You have explained this so well. Thank you
Hi. I was also recently told by a cardiologist that the ef numbers are only one measurement and that symptoms etc are also taken into consideration. My last ef measurement was 45% but I have none of the usual symptoms. Since that scan in March I’ve started walking a couple of miles a day, I do cardiac rehab and I’m more careful of my diet (although I need to do more on that front!). I’m hoping that with the meds it will improve my ef.
This site can be invaluable for support and information. There’s also a website called pumping marvellous which explains everything in clear terms. Do yourself a favour and don’t Google!! Most of the stats on there won’t be relevant to you and are decades old. There’s been very good advances in heart care in recent years and tons of people live long and full lives despite their heart problems. You’ll find plenty of support on this forum, don’t be afraid to ask for it. X
Hello, have you discovered The Cardiomyopathy UK website? It’s brilliant and their nurse helpline is fantastic too. Here’s the linkcardiomyopathy.org
There’s also info on the BHF website.
Was just about to suggest the same site.
My ef came back 40 to 44 percent estimated. But I like the idea that the lower end of normal is 50 percent. That give me some confidence. But it is alot to take in all these figures you get on your tests. Good luck for the future.
Thank you , all the best with you also !
Brilliant points thank you from a fellow hearties z👏👏
Hey missjaay
I'm 35 with DCM, was diagnosed last year. My EF is 10-15%. The information is alot to take in and I still process the amount I get given.
The best advice I can give is to rest as much as you can. It may seem boring etc but you really do need it.
I have good days, full of energy and then bad days where I'm stuck to my bed. I am always told to rest. Don't rush into anything and take it easy
The heart teams are really good so ask questions or tell them if you don't understand anything.
Everyone is different, try not to stress or worry too much, I know it can be hard at times but you got this.
Wishing you all the best x
All the best on that and hope you gain good advice on here.
Hi I’m so sorry to hear of your diagnosis. My husband has been diagnosed with the same. Only read legitimate evidence based material British Heart Foundation & Cardiomyopathy UK, ask as many questions as you need, use all resources available to you in terms of support for you and family. It’s really thinking about things differently, no one would of wanted this diagnosis but it’s here, early diagnosis will of saved your life, fantastic medications any lifestyle changes you can make do so, most importantly be positive take control and be happy, you’ll be fine xxxxxx
Three cheers for this site, so much individual information filters through.
Hi Missjay, you will get lots of good advice on this forum. I was diagnosed Dec 2020 with Dilated cardiomyopathy, lvsd and AF. Having been a reasonably healthy 65 year old. My EF was estimated 10-17.5%. Mine was caused by a virus. I really struggled with my mental health, those dreaded words Heart Failure. I recently had my check up scan and was phoned by the cardiologist with the news that my heart was back in the normal range which as he put it was really good news.
Some advice from me, for what it’s worth.
Stay off Dr Google absolutely out of date Information on it. Should be struck off! Will do your head no good.
Get help if you need it with your mental health. Luckily I could afford private sessions with a Phycologist until a spot came free on the NHS.
Work with your HF nurse and cardiologist, to get your medication right for you. It took nearly a year to get mine settled. Take their advice and take your medication.
Take moderate exercise, get plenty of rest. Don’t be hard on yourself taking rest days. If you need it take it. I stopped calling the days when I wasn’t too good bad days and started calling them rest days ( bit there from my physiologist).
Eat a healthy diet( I was lucky as I had a reasonable diet)
You have age on your side, try and stay positive, try and help yourself as much as possible. You can improve. At 67 I feel quite well still need rest days.
Let us all know how you are getting on.
Take care.
Thank you Thatwasunexpected, for a very easy to understand explanation for this - both for others reading this post and for myself! It makes so much sense and is extremely reassuring.
I'm sure you've received a great amount of reassurance from the posts above Missjaay, particularly from 'thatwasunexpected's post, who explained it so easily and so well! Just wanted to welcome you to the forum and send you every best wish. Carol
I won't say welcome to the forum, as it's a shame you are poorly, but you know I mean it You will get lots of good advice on here.
Hi thereI was late 20s discovering I had AF. Cardiomyopathy runs in my family.
Diet, exercise, meditation, finding out then avoiding key triggers all useful as is good cardiology support and advice.
My EF function is a little higher than yours but not much. I get how scary that feels but the explanations offered on here are sound, and worth remembering. Keep us posted. And best wishes 🌸
Hi,I have non ischaemic dilated cardiomyopathy a well.Was pretty fit before diagnosis.What I do now is at a very much slower pace,I take the heart meds and ty to keep a well as I can walk 4 miles a day with the dog.I eat plenty of fruit and eat low saturate meals.God luck
Contact any time
Slightly different but 6 weeks ago I didn’t think I was I’ll then the bomb shell my heart was running at 20% so 4 weeks ago a quadruple bypass then I had a heart attack 2 weeks ago the whole lots been a massive shock I’ve just gone 55 and vey fit. The thing to look at is I should be dead but I’m not they found it and that’s the important thing, look at me miracles can be done. You now know before it gets to bay so the future is bright. I’m awaiting some counciling from the hospital because it’s screwed my mind if this is the case with you ask for some help it took me a bit to give in because I’m mentally strong but this has pushed me over the edge it was just such a massive massive shock.
You will get sorted the forums great and so many people want to help look after yourself.
Plant based diet would help. The preservatives, chemicals and hormones given to animals, are bad for us. Limit alcohol and go for daily walks.
Hi Missjaay40% that sound fine, I'm sure that you will be able to build the % up with time. Keep going and forget about the HA
What a shock for you so young. Whenmakingch anges do one thingat a time. IT's too much trying to do evrythingall at onnnnnce. Choosethe one you feel ismost necessary, ie diet and weight; smoking or exercise. The main BHF website has hundreds of heart healthy recipes but basically cut out friend, fatty food, pies pasta , cakes et c. Soft drinks are bad for piling on weight. Your GP will have a smoking cessation clinic and if you have had a heart attack you should be offered rehab exercise. I don't know you at all so only you can decide which one to start with. I found c hanging my diet easiest and lost 2 stone without even trying. Smoking was far far harder and I needed the help of the nurse. You can't fix evrything all at once so just take it steady. Good luck.
I want to thank you all for the messages and thank you for being so kind a welcoming . I am reading them all and will reply to them shortly x
I can't add very much to the already excellent advice given, except to amplify that 40% EF doesn't mean 40% of what it should be. I feel for you to be told this at 28, and good luck for your daily improvement. Don't know if you are overweight, but if you are, try to address that as a priority. You will feel so much better mentally and physically, and your heart will love you for it.
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