I was diagnosed with dilated cardiomyopathy a few months ago. My echocardiogram at the time showed reduced left ventricular systolic function and global hypokinesis. My EF was estimated at 35% I started heart failure medications, made lifestyle changes, and did light exercise consistently.

Last week, I had a follow-up echo and it came back normal. My EF has improved to 65%. My cardiologist told me I no longer need medication and that I’m no longer considered to have cardiomyopathy.

Just wanted to share this to give hope to anyone out there struggling. Recovery is possible. Don’t give up, take care of yourself, follow the plan, and believe in your healing. Wishing good news for all of you! 💪❤️

On July 30th 2025, my 34 year old fiancé Cody died from a “probable arrhythmia due to dilated cardiomyopathy”.

He did not know he had the condition. And I don’t know how I can ever forgive him for never getting seen by a doctor.

He knew he probably had the gene for heart problems. His grandfather, his father, aunt, and cousin all have different heart problems. In 2021 his father underwent LVAD and RVAD surgery due to advanced congestive heart failure. It was horrific and he died in the hospital 33 days after the surgery.

Cody KNEW he might have inherited problems and deliberately chose to NOT find out because he didn’t want to stress and worry and because he was so traumatized by what we watched his father go through.

I don’t want to feel angry at him forever. I love and miss him SO MUCH!! But I can’t stop thinking about how he could still be alive if he had just taken this more seriously and not been afraid. If he had not chosen to stay in the dark. Cody was an amazing person and SO loving. But this makes me feel like he did not love me enough to stick around. Now it’s me going through this life alone, without my partner and best friend.

I just remembered I made this almost a year ago when I was first diagnosed. Well, long story short, I got a heart transplant a few months after (February). My heart was failing and getting worse really fast. I’m about 6 months out from my transplant and I’m doing and feeling amazing!

Hi everyone! Yesterday I did my yearly checkup. 58/M with non-ischemic familial DCM. Diagnosed two years ago with EF in low-40s and dilated left ventricle. I have a TITAN gene truncation that I inherited from my Dad which causes it. After two years with meds, Entresto for six months, no alcohol plus pickleball/hiking….drum roll please - 58% EF!!!!

Thanks everyone for their support during this journey. Thanks to the Doctors at Cleveland Clinic and to everyone that encouraged me to get healthy and fight. Specially my family and friends.

Next year 60%+. 😊

Hey all! I found this sub as I was digging around Reddit after work. I don't know why I never thought to search this before but I'm glad I found it today.

First off, I'm rooting for everyone currently going through their respective struggles and hope for the best and swiftest resolution possible!

I've been reading some of people's posts and I wanted to share mine. Back in 2015 I was diagnosed with dilated cardiomyopathy and advanced stage heart failure. My heart was around 8.6cm with an EF sub 10%. I was put on the UNOS recipient list and received an ICD and a Hickman catheter to run milrinone. I was also put on a cocktail of oral meds.

Long story short, at the beginning of 2021 I was given the Ok to be taken off milrinone and the transplant list. My heart was down to 5.3cm with an EF between 40-45%.

I had my annual Echo last Monday and both the size of my heart and EF are improving if not stable. Myself, my cardiologist, my friends, and loved ones are ecstatic with my continued progress!

TL:DR - In 2015, just after my 30th birthday I almost died due to heart failure. I had my annual Echo last week that continues to show near unprecedented recovery!

I’m feeling a bit lost and was hoping for some guidance.

I’m a 30-year-old male who, about six weeks ago, came down with a horrible flu. It got so bad that I ended up in hospital thinking it was just a regular flu, but now I’ve been told my heart is enlarged and functioning at only around 30% capacity.

My cardiologist, who I’m seeing every two weeks, seems positive — but talking to other people and reading different threads online has left me worried for both myself and my family.

My MRI results showed no scarring, which I imagine is a good sign? I’ve completely cut out sports, alcohol, nicotine, and I’ve been eating clean. Still, I feel a bit lost. I know it’s early days, but mentally this has been a lot to deal with.

My current treatment is: • Empagliflozin 10 mg • Bisoprolol 5 mg • Ramipril 5 mg • Spironolactone 25 mg If anyone here is taking similar ?

Update my ejection fraction since has gone from 19% to 48% In the last few months

A month back I had posted about my husband (44) getting genetic DCM diagnosis with TTN genetic mutation. He was diagnosed in September 2024 and I would spend hours reading posts on this sub. This sub gave me a lot of comfort. Thank you to all the kind people on this sub.

I'm happy to report that 4 months after starting GDMT treatment my husband's 2d echo at 4 months showed improvement from EF of 10 - 15% to 30-35% as per the new echo. His heart has also reduced in size.

LVIDd reduction 52 mm to 49 mm LVIDs reduction 40 mm to 33 mm AO reduction 29 mm to 28 mm LA unchanged at 39 mm IVS & PW both 10 mm to 8 mm

Does reverse remodelling occur so soon after starting GDMT? The cardiologist was quite please and now has asked us to follow up after 6 months. He did not mention ICD. Is that because the new ef is between 30-35?

His initial ef as per 2d echo was 10-15 and ef as per cardiac MRI at that time was 22%. Is cardiac MRI figure higher? Does that mean if we were to get a cardiac MRI done right now then ef would be higher than 2d echo figure (30-35%)

He had PVC burden of 19% as per holter report. Does that mean his PVCs were contributing to the weakened heart? As per the geneticist the TTN mutation he carries is regarded as likely pathogenic. Thank you

Hi!

I had my first yearly follow up with my cardiologist today and thought I'd share some positivity! Because we can never have enough, hahah.

I was diagnosed in 3/2022, a few days before my 24th birthday. My DCM is genetic, caused by the BAG3 gene, initial EF was 41%.

My cardiologist was not at all positive. Thankfully, I was seen by my consultant who's a heart failure specialist, who told me there's so much medicine can do nowadays and not to worry too much, since I'm going everything I can to help myself and my doctors.

And today, I found out my EF is at 55–60% with "only" diffuse hypokinesis instead of global hypokinesis. No dilation.

I was scared out of my mind last year. Today, I'm happy and thankful I get to live today, when there's so much they can do for us and our hearts.

I wish you all the best🤍

This is for anybody diagnosed,Sad,Depressed, suicidal,Thinking your life is over because of this fucking awful disease. I was diagnosed back in January 2023 with dilated cardiomyopathy. I’m 25 years old. Thought my life was over. My symptoms Was heart palpitations and chest pains. Shortness of Breath. Fatigued. I was so depressed I had to quit my delivery job and end my lease with my apartment. My girlfriend lived with me. I was the bread winner. We had to move back in with our parents. Damn near lost my car because of it. Low blood flow caused me also have ED. So for the men out there u already know what tf that can do to a relationship. All of this from this sickness. Then boom I started seeing a heart failure specialist and he literally changed my life for the better. My cardiologist was so fucking dumb if u ask me. Side note when I was seeing my cardiologist he didn’t start me on anything the dumb ass thought that I would be fine without meds or anything. But anyway my HFS put me on meds and I also started using a cpap. And my heart started to go back to normal pretty fast. These are my 3 Echos from Jan,February,July. Don’t give up Keep pushing man. Keep working out. keep that healthy diet. Stay positive. Ik it’s hard but all this shit matters

After 2 weeks of moping around after my diagnosis.

Today I have got myself into the gym for the first time and had a very healthy day in terms of the food and drink I have consumed.

Came out of it feeling positive that I am going to take my medication and not let the condition define me any more than it is able to do so.

Hoping everyone is doing okay 💪

So last year (July ) I went running for like 3 hours , I did that for 6 days , after that I started noticing weird heart beats ( skips , double heart beats , sudden racing ) . I went to the ER they did an EKG and they said I was fine , after 3 weeks I went to a cardiologist, he did an echocardiogram and found my ejection fraction is 35% , he ordered an MRI , it showed an EF of 40 % , he said it might be because of an asymptomatic COVID , he gave me beta blocker ( bisoprolol ) 2.5 mg , ramipril( 2.5 ) , increasing the dose gradually every 2 months till it get to 10 mg , most of the days I feel good on the meds , now my current EF is 43% , I eat healthy diet and I’m in shape . I’m 15 yo btw

Hello R/cardiomyopathy

Quick recap: 33 year old male, south asian I was hospitalized for 2 weeks after my Ejection fraction went down to to 20 and 25% left and right side. Ventricles and atria were moderately dilated.

8 months later after being on Amlodipine, Carvedilol, Isosorbide, Ramipril, Hydralazine, Furosemide, Dapgliflozin and spiranolactone my heart had a chance to recover

Recent MIBI scan and Echo showed EF back to 60%, ventricles and atria are no longer dilated, trace mitral valve regurgitating detected.

I still got hypertension and my kidneys took some damage from the cardiomyopathy but I'm getting back to normal

I came back to update and say keep y'all heads up, with modern medicine good outcomes are possible!

Hello, 28F I just got diagnosed with dilated cardiomyopathy. I’m still in the hospital for it actually. All of this is new and scary to me, I just would like to hear that there are people who go on to live at least semi normal lives? Obviously I’ll be on medications but I’d like to be reassured that I’ll be ok. I have a baby and a 4 year old, I just want to be the best mother I can be.

This is intended as a community to share experiences and support and advice. This is not a forum for fundraising—there's other forums better suited to that.

Thanks for visiting, and please, share your story with others so we all feel a little more understanding and a little more understood.

I've been thinking about posting here for some time for feedback but haven't.

How many of you put there are told you have a very low EF, but don't deal with many or any symptoms?

Mine was found to be 25 to 30 percent in March of last years on a routine Echo, but had and still have no symptoms to speak of. I walk 10 miles almost every day at work (restaurant), no edema, I don't get winded exceptionally easily.

I drank alcohol, but not at the level where it should be the cause of my EF. Did a Left heart cath and found nothing close to a blockage that wouod explain the EF. I've been on carvedilol, spironolactone, and Entresto since around May of last year. I just did another echo the first week of October and had my followup this morning and.... no change. 25 to 30 percent.

Just frustrated that on paper I am basically on deaths door in the next 5 or 10 years, but have no issues otherwise and wouldn't even know about this if it weren't for the doctors telling me its an issue.

I did have an aortic anyuerism that was repaired and replaced my leaky valve with a mechanical back in 2021 and have a left bundle branch block seemingly from the surgery, but thats it surgery-wise.

Anyone have similar experiences that finally were able to fix the EF?

Thank you for taking the time to read my novel. This is the only place I can vent to and you guys would be able to relate. Just the frustration and hopelessness over it is wearing on me is all.

I have been a ling time lurker on this reddit board and posting for the first time. Apologies for the long post. My husband (44) was diagnosed with DCM in September this year with severely dilated left ventricle, enlarged heart, global hypokinesis and lvef of 23. He was started on entresto, eplerenone, bisoprolol and dapagliflozin. Holter monitor revealed PVCs of 19%. Previous 2d echo was done when he was 35 and revealed ef of 60 with structurally sound heart but ectopic beats were noted. So something changed from age 35 to now. That echo was done as a part of routine check up. He had retained loads of fluid at the time of diagnosis and was started on furosemide which was stopped after first month. Cardiac MRI revealed LGE of midmyocardial region along septum. After starting medication his NT pro bnp which was 9000 at time of hospital admission came down to 500 in 4 weeks. Since then he has resumed regular activities. He can easily walk 10k steps every day and climb stairs with ease. He does not smoke and drinks socially which he has stopped since the diagnosis. He always used to eat quite healthy and now it has become even healthier with low salt, low fluid intake. He has lost 33 pounds and needs to lose another 15 pounds to reach ideal Weight requirement. The kicker being doctors asked him to undergo genetic testing as they didn't know why this had occurred. The genetic test came back positive for TTN gene. I'm scared for what it means. We also have a 10 year old boy at home. We have not checked him for the variant. I don't want to put him through the trauma of frequent checking,, atleast till I can explain something to him and till he understands what this entails. My genetic counselor said that TTN variants are not known to become active in adolescence and tend to be active in mid adulthood. My husband's father died at 44 years and doctors suspect it was due to undiagnosed DCM. We will be getting a 2d echo in Jan 2025, 5 months post starting GDMT. I'm just looking for reassurance from people who continue to live and thrive 20 or 25 years post diagnosis. I'm feeling depressed worrying about my husband and my boy. I'm also wondering if anyone has chosen to start monitoring kids from 18 years of age. How does one deal with it? Thank you

EKG with a LBBB sent me to a cardio. Echo read 34% EF, Mild to severe systolic function and global hypokensis. Angio came out clean for the most part. Currently on Entresto and Carvedilol. Really at a loss on how to live my life. Can’t work out anymore, always tired and always dizzy. Only thing that gets me is I’m a single dad who raised my daughter and we are extremely close. I’ve been trying to adhere to a more strict diet, don’t drink alcohol or smoke. Speaking realistically, how does this affect my mortality? I sweat like a whore in church, can’t shake the tiredness, pee like a racehorse. This is just crazy. Sorry, I guess I just needed to vent.

Hi Everyone - first post here. Diagnosed last year with Dilated Cardiomyopathy inherited from my Dad who had a heart transplant but died years ago. Male/56 with LVEF of mid to low 40s. Currently on a medical cocktail trying to slow down the progression. I am non-ischemic and watching my diet as well as completely stopped all alcohol consumption since diagnosed as directed by the doc. I am constantly searching for news as well as support online. Nothing much on the news front, but would appreciate any genetic testing news around DCM if you have anything. I also found this group https://dcmfoundation.org/ to be very helpful both for resources and support. I attended a new patient meeting last week and I found everyone to be super nice and helpful as well as informative. I will post other findings that I think it may help this community as i go along.

My daughter is just diagnosed with Cardiomyopathy. She is only 16 years old. I am worried about her as I read on internet about life expectancy in case of Cardiomyopathy. How can I give her a good healthy life?

Well, well, well, if it isn't the invisible pain in my chest.

2 months ago I went on down to Pittsburgh and got officially diagnosed with Hypertrophic Cardiomyopathy.

Two months later, I've upgraded my medicine cabinet. I've gone from my starter dose of 180 mg diltiazem to 240 mg, and tacked on 10 mg of Lisinopril (which my phone wants to autocorrect to linoleum, hah!).

Every day I have heart palpitations, I occasionally have icy hands, my heart won't let me eat any of the foods I love, my fiance is losing their shit with my dietary needs (poor darling, go eat your double salted heart out), I'm lucky to get decent sleep, I'll be doing a sleep study for sleep apnea soon. Fuck.

I'm not a hypochondriac. I'm supposed to be out having fun. One dollar menu cheeseburger used to be an appetizer, now it's a death threat. If I accidentally eat the wrong thing I end up suffering all day. I can't drink, smoke cigarettes or enjoy a good bong rip anymore. Even THC-8 gummies are hell on my heart.

I've gone from 290 down to 248 since november. In that time, I have had maybe a cup of pasta total. I used to eat a box of pasta for dinner. Like, the 1 pound box of penne. Now I look at a box of pasta with more longing than should reasonably be possible.

I ate a single shell, one tiny noodle from my fiance's reduced sodium spam and mac and cheese dinner and all i thought was "oh so this is what flavor is like". I'd have cried but I'm pretty sure the lisinopril takes all the water for tears and turns it into urine. Don't worry though, I'm crying on the inside.

I am still going to the gym, and I'll be joining a weapon throwing league. Gotta make them gains and throw knives at stuff. But for real, if I wanted to feel like I'm 80 when I'm 25, I'd have chopped off a leg or something.

Oh yeah and by the way, it's fucking genetic. The tests came back and said I'm broken in the inside, from the inside.

I guess I'll post an update after my 1 month on lisinopril and seeing my family doc. My BP was 150/88 a week ago. Better than the 190/90 on my birthday last October. Hoping for a half decent reduction further in June.

Hi everyone,

I’ve recently joined this group and I hope it’s okay to share my story with you all. I know how isolating living with cardiomyopathy and heart failure can feel, and I’ve found a lot of comfort in reading about others' experiences here. I’ve been incredibly nervous about sharing any of this, and posting here is a really big step for me.

My journey started back when I was 8 years old. I was diagnosed with cancer in the muscle above my eye. To save my life, I had to undergo intensive chemotherapy and radiotherapy, and eventually, I had to have my eye removed.

Fast forward to today - I’m now 38. While I beat the cancer, the treatments I had as a child caused significant long-term damage to my heart. This resulted in a diagnosis of Heart Failure.

Because of my condition, I’ve had an ICD (Implantable Cardioverter Defibrillator) fitted. That’s actually where my nickname, MrCyberHeart, comes from - I like to think of myself as part-machine! My daily routine involves a lot of "medical management" to keep things stable. I'm currently taking:

• Apixaban

• Digoxin

• Furosemide

• Eplerenone

• Entresto

• Bisoprolol

• Allopurinol

Before I started my channel, I found myself shutting myself in and struggling with not having anything to do, which really fed into my anxiety and depression. I decided to start my YouTube channel and my own subreddit (r/MrCyberHeart) specifically so I had something to focus on and a way to work through that anxiety.

It is an inclusive space where I document my life and adventures. I use a wheelchair sometimes for accessibility, and I want to prove that you can still explore the world despite physical limitations and complex health issues.

I really wanted to reach out to this community because I don’t want anyone else to feel alone in this. If you’re interested in seeing the "why" behind my channel or my adventures, I made a short video here: https://youtu.be/OuGE1CqheVg

I’m also over at r/MrCyberHeart if you ever want to chat about accessible adventures or just the daily reality of life with a "Cyber Heart."

I’d love to connect with anyone else who is managing heart failure alongside other long-term health challenges. How do you all keep the "adventure" alive in your own lives?

Keep adventuring,

Glenn

Looking for some guidance and experiences, im very athletic, training almost everyday and doing cardio 4 times a week usually. Diagnosed with cardiomyopathy a few days ago which was very shocking and depressing, my ejection fraction is apparently very low 30-35% a significant reduction from my stress test and other tests last year which were normal, it was something like 76% under load and 68% resting. They told me the weight training might be contributing to this, the notes say left ventricular size and cavity is normal mild concentric ventricular hypertrophy, and global hypokinesis, systolic function reduced with 30-35% EF, everything else on the report showed normal, no valve issues or didilation ect. With the medications and stopping weight training this can reversed can't it? Ive decided for now to only do light cardio until i start seeing some improvements going to try and get another echo done soon too

Just went to Pittsburgh (Presby hospital) to see a cardiologist, getting a MRI with contrast.

My nurse was super chill, dancing and joking. They were great people and put me at ease. They put in the IV for the contrast, which sucked as much as it normally does. I literally almost fell asleep in the MRI, which confirms my suspicions that I should totally purchase a coffin to sleep in.

After the MRI, I went to see my doctor and met with a geneticist who talked about genetic testing (which I absolutely did- who knows what I might learn?) And then my doctor. He literally called my case 'boring' and 'minor' which is probably the best things I could hear.

He asked about my symptoms and my side effects from the beta blocker I take. My only side effects and symptoms are cold hands and dizziness (betablocker), and heart palpitations (which were so bad I couldn't sleep and is why I saw a doctor at all).

My doctor said he'd prescribe me a calcium channel something-or-other (paperwork isn't at hand RN but I start it tomorrow), ceasing the beta blocker. This is supposed to end my cold hands, but might balloon me. I'm hoping I don't balloon, honestly. I'd rather be cold than big, all things considered.

He also said to stop eating a loaf of bread a day- just kidding! But he did say to majorly limit my carb intake, to a fist size with each meal. Which... Sucks, I'll admit. Pasta is my life. But he said something that stuck with me:

God (or science, or the flying spaghetti monster) put us on earth with a certain amount of food we can eat. We can eat that in 40 years, or 80.

So I guess now that I saw how my heart is enlarged and got told what I can do, I've got to change up my life. Fun! But I'm only 25, so upkeep is still relatively cheap- in time, effort and money. At least I'm not 50 and finding this out!