Looking to chat to anyone with Cardiomyopathy. How long they have lived with it and how it impacts their life?
My Cardiologist tells me I should be able to live a normal life and there's no reason why I shouldn't live quite a few years. Yet I've read some articles that are gloomy reading.
Feeling quite alone.
It depends upon what type of cardiomyopathy as to level of change and impact. I was diagnosed with dilated cardiomyopathy at 44. Thought it was a death sentence when they class you as having heart failure. That was just over a year ago, but taking medication and losing sonme weight along with some regular exercise has helped and i feel fine. I would say listen to any advice you are given from the doctors and do what you can to improve your lifestyle.
It isnt as bad as you initially think and feel, and you will worry less as you get used to a few changes.
Please try to be positive, i know its easier said than done but it does get easier.
Matt
Thanks for your response Matt I'm really grateful. I wrote a long response to you and think I might have sent it private message by mistake. I'm still learning how to use this Web page.
Hi there, I don’t personally have cardiomyopathy but my son was diagnosed with Dilated Cardiomyopathy and severe mitral valve regurgitation at 8 weeks old. The condition is managed with medication and he is now 4 years old and doing well. He lives as “normal” a life as you would expect a 4 year old to, however, is limited slightly by the fatigue which increases in the warmer weather. We were told when he was a baby that they couldn’t tell us how the condition would affect him later on in life but for now his heart is stable and he is growing as he should (his development is behind but that is due to a separate issue not related to his heart) . Not sure if this helps at all but feel free to ask any questions about symptoms/daily life etc !
Hi. Thank you for your response. And I hope your son continues to do well. I've been diagnosed with idiopathic dilated cardiomyopathy last week. So early days for me making sense of it all. But my Cardiologist is really positive that I should live a normal and long life with lifestyle changes and medication. Thank you once again.
The charity Cardiomyopathy UK are really helpful. They have a magazine, a helpline, a website, support groups.
Hello and thank you for your reply. I have reached out to Cardiomyopathy UK. They are organising a peer mentor for me, which I'm really pleased about. I've also joined a local group Facebook page and they've been brilliant too. Many thanks
It depends on the type of cardiomyopathy and whether it progresses.
I have dilated cardiomyopathy. I was diagnosed 14 years ago when I was pregnant. It doesn’t combine well with pregnancy - had so many medics at the delivery you’d think it was the second coming. But it didn’t affect me at all after that.
Unfortunately I had a major heart attack (a STEMI) 9 weeks ago, but it’s a whole other problem to the cardiomyopathy. The cardiomyopathy didn’t cause it. Neither did any of the usual causes of heart attacks (I’m an active, non-smoking pescatarian). Gawd knows what caused the clot that blocked my artery, but at the moment it was a “spontaneous coronary event”.
Take the meds your cardiologist prescribes, exercise (but not so you’re unable to hold a conversation), eat healthily, don’t smoke and don’t drink too much.
There’s a lot of info on the BHF website, and also cardiomyopathy uk. The BHF helpline also have very helpful volunteer nurses Monday to Friday who can answer any questions you have.
Thank you for your response. I hope you are continuing to recover from recent events. I was newly Diagnosed last week with idiopathic dilated cardiomyopathy. They also found my heart is moderately enlarged too because of this. My EF (learning all these new terms) apparently is 46. And it should be 55 -70. They are starting me on Entresto next week. They had already started me on Bisoprolol 1.25 mg (their original thought was my palpitations were anxiety) and that was increased to 2.5 mg Friday gone. Even though the CT scan showed my heart vessels are fine. They found some cholesterol "fur" so they are starting me on a statin too. My main symptoms are palpitations and occasional breathlessness particularly when I'm asleep. I found this community page via BHF. I've also had to stop reading Dr Google. Some reading wasn't doing me any good! Many thanks again.
My EF was 51 pre-heart attack, 49 post. But do put it into context that over 50 is considered normal. I consider myself really lucky to have an EF of 49 after what was a pretty heavy attack. There are lots of people on here who live completely normal lives with much lower EFs.
It’s also completely normal and understandable to be hyper-tuned to any potential health symptom after an event or diagnosis. That’ll get easier in time.
I used to be on a very low dose of Ramipril (ace inhibitor). I’m now on that plus Ticagrelor (platelet reducer), aspirin, lansoprozole, avortastatin and calcichew because I have osteopenia thanks to undiagnosed coeliac for many years. I’m about to have a beta blocker and SGL2 inhibitor added into the mix. It’s a lot of tablets, but I take them because I want to live as long as possible!
I was diagnosed with Dilated cardiomyopathy January 2020, aged 38. I spent a month in hospital while I recovered and the doctors found the right balance of medication for me as I was very unwell, I was considered for a heart transplant but thankfully I recovered well enough that I didn’t need one. It took a few months for me to get back to my old self, but now I feel really good. Who knows what the future holds but the medication is working, I lost a couple stone in weight, look after myself a bit more. I was fitted with an ICD in August 2020. Everyone is different but there’s no reason why you can’t get back to as normal a life as possible if recovery goes well, I certainly have. I’ve recently moved house which involved endless lifting of furniture, boxes, trips to the dump etc which would have seemed impossible a year ago. And I also have a young son who keeps me on my toes. When I was first diagnosed it was totally unexpected and I was worried about the future, dying young etc but now I hardly worry at all.
All the best.
They sure are gloomy reading. I read them a thousand times! It’s the brain going to extremes. I was diagnosed last August at age 48 with Dilated Cardiomyopathy, severe biventricular heart failure and AFib. My EF was 26%. After six months it went to 60%. They expected it might go to 40% tops. I did everything I was told during the six months. My heart also returned to normal size. At about the same time I was hit with Depression. I bit the bullet, sought advice from everywhere, took it and looked after MY self. At times I kicked, screamed, and wept. Being told I had a Chronic Illness was SHOCKING but the shock has subsided a great deal. Your Dr sounds very good. Please remember you are never alone. Do not worry and hang in there.
Hi Gm24, nice to hear you feel much better now. I was diagnosed of idiopathic mildly dilated Cardiomyopathy, which means no cause was found,at 27 years old(around February this year). As at diagnosis,my EFs were: RVEF 45%, LVEF 49%. I NEVER experience any oedema, shortness of breath, fatigue or any other associated symptoms. Just CONSTANT PALPITATIONS, hotness of the body and frequent urination. I know my EF will definitely get back to normal. Just like you mentioned, your heart later returned to its normal size. Will mine ever return to its original size? What were the things you were asked to do within those 6 months and how did you follow through on them? I have stopped smoking for many months now, hardly ever drink. One major question: even as your heart had normalized in size,do you experience any palpitations,be it occasionally? Will my heart ever return to its normal size since the dilation is a mild one? Wishing you the best.
Hi Chibuzo. Yes, I get palpitations and a flickering feeling at times. I do worry but not for long because Iif something were to happen I would rather be prepared. My heart may have returned to its normal size but I am never going to take that, nor my EF percentage to be signs that I am out of the woods. Things can fluctuate and change and there are other factors involved with these types of diseases that can affect situations. I still get fatigued, short of breath and I have to drink less fluid. The things I did for six months are the things I continue to do. Good diet. No alcohol. Physical activity. Less stress. Good sleep.Weight loss. Medication. Spiritual strength. I don’t know if your heart will return to its usual size or whether it already has. What I do know is, worry will only prevent/prolong it from happening so if you can, I suggest you try and occupy yourself with other things, even something small and seemingly insignificant in order to combat the worry. You may already be doing so. You don’t smoke and rarely do you drink alcohol. Those are excellent achievements. Keep chipping away at things and remember to pause and take some credit for your efforts. You had no SOB or oedema and your case is mild. To me that sounds a lot better than it could have been . Keep focusing on what YOU can do, keep reaching out, try not to stress too much and remember that even though you ARE young and you would rather be anything but sick , I think your youth might actually be an enormous asset in your recovery. One step at a time, mate.
Cardiomyopathy covers a huge range of conditions, causes and symptoms. I can only really share my experience but you will see lots of different experiences here. I was diagnosed with dilated cardiomyopathy in 2016 but now know that I had the condition at least 6 years before and I suspect for much longer than that. I'm nearly 50 now and still live a completely normal life. There is very little I can't do and that includes exercising. I go to the gym twice a week and do Pilates twice a week, plus hill walking with our dog. I've been advised not to go in go long distance running / marathons that kind of thing but that's about it. I'm fortunate that I have little in the way of symptoms other than occasional and brief palpitations. Recently I have, it seems, had some decline in heart function and will be getting a CRT-D implant that will resync the left and right side of my heart and also protect me from dangerous arrhythmias if they ever start happening (I have scarring on the heart that might causes this). Fitting the device is, by all accounts, a fairly simple procedure, handled as a day case. It should improve or at least preserve my heart function. Not everyone needs a device like this, for many the meds are enough and can sometimes improve the heart significantly.
It sounds like your doctor is optimistic about your situation and there is no doubt that many people with cardiomyopathy do live long, fulfilling lives. If you are feeling alone, I can recommend joining in one of the online groups run by Cardiomyopathy UK, as well as participating on forums like this one. These include zoom calls that are run and moderated and often have a cardiac nurse on. They are very supportive groups where you are bound to talk with someone will have been through what you are experiencing and will be able to offer support and encouragement. It can seem daunting, but everyone is very friendly and its worthwhile.
Hi, I was diagnosed 2 years ago with hypertrophic cardiomyopathy. It’s a shock and it’s one that will take a while to adjust to. No one I know had ever heard of it so other than my cadio nurse there’s no one who understands or who I can relate to. I hope you find things easier as time goes on.
Hi. I have been experiencing constant and severe palpitations since 2014(I was 21 years old then). After a whole lot of medical rigmaroles over the years, finally by February 2021(27 years old now,will be 28 by Halloween's day, October 31),I was able to get a cardiac MRI which revealed mildly dilated Cardiomyopathy for which no cause was found (idiopathic). I have NEVER experienced any oedema, shortness of breath, fatigue or any other associated symptoms. NEVER. I only suffer constant palpitations and frequent urination, with hotness of the body. I read a response to your post where someone said his heart later returned to its normal size after suffering DCM,AFb, and severe biventricular failure, after months of medications and dedication. I hope my mildly dilated heart can reverse to normalcy. I quit smoking many months ago, hardly ever drink. My cardiologist prescribed Carvedilol 3.125mg and Lisinopril 10 mg once daily. I have been on them for almost 3 months now and I have started having some relief but it's going to take a while. My greatest happiness would be if the palpitations would finally leave me alone. I advise you stick to your doctor's instructions and maintain a healthy lifestyle. Gradually, you will realize there isn't much to worry about. Take care.
Ahhh thank you for your reply and kind thoughts. It sounds like things are starting to go in the right direction for you. Wishing for your continued recovery. Take care.
Thanks, fellow 'heartie'. Life is unfair but strive we must. I hope you are doing ok,too. Stay positive and be kind to yourself. Time heals all, I guess.
I’m currently undergoing tests for this, due to an abnormal ecg. I’m only 37, never smoked and keep fit.Can I asked how it was diagnosed?
I’ve had abnormal ecg but normal chest X-ray, bloods and normal echo, currently waiting for MRI scan to look for cardiomyopathy, I’m so scared
Hello. My cardiomyopathy was picked up by the echocardiogram. My actual CT scan (apart from some cholesterol fur) came back clear. A 24 hour holter and a more recent ECG picked up an ST depression.
An MRI was offered to me, more to confirm the echocardiogram, but I declined because of my fear of confined spaces.
I can fully appreciate you feeling scared. That's all I've felt since diagnosis. However I have found a lot of peer support has helped me since my diagnosis 2 weeks ago.
If I can help in any way please let me know.
Thanks you, it really does help speaking to others who have been through or going through similar. I’m so anxious about the MRI scan as I suffer witn claustrophobia and I really don’t want to have it but think I need too, I’m also waiting for the 24 hour holter. Are you under follow up with the cardiologist?
Hi I have hypertrophic cardiomyopathy I have had MRIa few times over the years I to don’t like small places I always go in feet first so your head is almost out the machine
If you just ask to go in feet first they do t mind 👍🏻I told the guy in front of me last time and he did go in feet first and he was over the moon as he was so scared
I was diagnosed with HoCM or hypertrophic cardiomyopathy five years ago at age 67.
The only change I have made to my lifestyle is to take bisoprolol beta-blocker tablets and follow my cardiologist's advice to stop running half marathons.
I told him that I was going to ignore it with the exception that I would take my pill and be careful not to over exert myself and he wholeheartedly agreed.
I now wear a heart monitor when I run and keep my heart rate below 130 bpm as, without beta-blockers, I seem to go into atrial fibrillation at about 145 bpm. The last half marathon I ran before being diagnosed I think I must have gone into AF on 6 or 7 occasions because, when I go into AF, my running watch does not recognise my heart rhythm and reports my heart rate as zero ;-).
The furthest I have run since is 9 miles and I am going to try to persuade him to allow me to run half marathons as long as I keep me heart rate below 130 - 135bpm.
My big regret is I think going back to windsurfing is out of the question (lots of exertion required), dinghy sailing in strong winds (lots of exertion) and scuba diving (problems if you need to surface quickly). Ordinary surfing is fine.
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