r/Heartfailure

I'm a 43 year old male diagnosed with heart failure and prolonged A fib 3 and a half years ago.My EF was 20% and they put me on a beta blocker, a blood thinner, and a diuretic. I decided to change my lifestyle, eat well, exercise, and not take the medication. It was very difficult, but I actually got into very good shape and my heart completely recovered. I went to the ER a couple of times because of the edema and just the way I was feeling, and every time they were just amazed at the recovery and said there is no longer need for medication.

I spent eight months in the jungle of the Philippines and it was seriously stressful. My heart started to deteriorate and was going into A fib. I went to the hospital in the Philippines, which was a six hour ride, and they put me on a beta blocker. I still was having bouts of A fib. I came home to finally surround myself with doctors to try and stabilize my heart.

This is crazy. I was put in the ER for sustained A fib, I had it for about 12 hours, super scary. The ER doctor wrote me a prescription for the same beta blocker and I have not had A fib since. It's sad that the Filipino version of the same medication was super ineffective.

I had a Holter monitor on for two weeks and it showed no signs of A fib, and I did the ECG and my heart is pumping efficiently. I'm going to request an MRI to see if more of the heart has died.

Honestly, I really don't know what's going on. I don't know what caused my heart to die. I don't know how long my lifespan is with this condition. Please share you experience, I’m not looking for anyone to solve my issues, but I would love to hear your experience.

PLEASE SHARE YOUR EF IF YOU’RE COMFORTABLE AND IF YOUR DOCTOR GAVE YOU A POTENTIAL LIFESPAN, PLEASE ADD THAT AS WELL. I JUST WANT TO HEAR OTHER PEOPLES EXPERIENCES AND WHAT THEIR DOCTOR TOLD THEM I’M NOT LOOKING FOR MEDICAL ADVICE. THANK YOU. 🙏

Hello all,

I was diagnosed with CHF and have been recommended to take a GLP-1 for weight loss. My insurance is not covering any GLP-1s so I was curious to to my fellow heart failure patients:

For those who did lose weight naturally with no GLP-1. How so? I feel like I have plateued.

AND

If you took a GLP-1 and stopped. Did the weight stay off? I don’t want to stress about the possibility of weight coming back if I am paying out of pocket.

Thank you guys in advance.

Has anyone felt like you were overheating like a 1998 computer since being diagnosed? I always have to bring something to drink usually something that has electrolytes in it and a fan and I always have to have ice. I know it’s normal for some but I don’t know if it’s something everyone has I learned over almost 2 years everyone has heart failure differently.

Caught myself doin this again today. little things like energy levels, recovery after a walk, how long it takes me to feel rested… my brain still compares it to who I was before my hf .

Whats strange is most days Im actually doing alright, but mentally theres still that comparison running in the background.

Good day everyone, I am a M40yrs and was diagnosed with CHF in 2022 @ 36yrs. My EF was at 38% when 1st diagnosed. I am now at 54%. Things have improved with my cocktail of meds and lifestyle changes.

The only issue is I keep getting diagnosed with something else bad. Through this process I have acquired artery disease, anemia, vitamin D deficiency and so on. The biggest one is kidney injury. I'm at Stage 3a kidney disease.

Why, oh why are all these other things popping up and my heart functions have been fairly fine these few years. Anyone else had these issues with your CHF diagnosis? And has anyone dealt with kidney failure because of your CHF?

Just need a lifeline out there that understands! Thanks

Hi everyone, I’ve just been diagnosed with mild non-ischaemic cardiomyopathy / HFmrEF and I’m trying to get my head around it and hear from people with similar experiences.

I recently had a Coronary CT Angiogram after cardiac investigations, which showed completely normal coronary arteries and a calcium score of 0, but my LV EF was found to be around 45% I’ve now been diagnosed with mild non-ischaemic cardiomyopathy / mild heart failure and referred to a Heart Function Clinic for follow-up and further testing.

I’ve started 2.5mg Bisoprolol and 2.5 Ramipril daily

The meds are currently making me feel quite tired, slowed down, dizzy/lightheaded at times. I’ve had some depression since hearing the diagnosis- I’m only 32 and life was just starting to improve for me, so it’s left me feeling pretty upset.

My doctors seem reassured by the fact my arteries are clear and that the dysfunction is only mild/moderate and caught relatively early.

A few things I’d really appreciate advice/experiences on:

Did anyone’s EF improve significantly over time?

How long did it take to adjust to bisoprolol/ramipril?

Were you able to return to normal exercise/life eventually?

Did fatigue and dizziness improve after the first few weeks?

Any lifestyle changes that made the biggest difference for you?

I’m trying to focus on recovery now (no stimulants, healthier routine, better sleep/diet, gentle exercise etc) but honestly feeling a little overwhelmed and scared by the diagnosis, even though I know mine isn’t considered severe.

Would really appreciate hearing from anyone with similar experiences.

I have had air hunger since I was a child. I have anxiety. Ptsd. I cant even sit down at dinner without rocking nonstop back and forth from nerves and built up tension from years of stress and trauma. I do not smoke and never have. Never drank. I dont do drugs. I dont take any meds aside from Tylenol. I have a family history of high BP and heart failure, my mom had it. All my siblings on high BP meds. I am 5'7, 136lbs, active, lift weights. My only symptoms are air hunger that makes me yawn and gasp for air until I get a satisfying breath, I get one, the the cycle starts again. It can last hours or days, then stops. I often feel off balace and a faux sense of dizziness. No chest pains. Pulse usually 70-90, but more in the 100s when active or walking. My last BP reading at urgent care was 139/89, but last year when I checked my BP a ton at home, it always ranged around 117/84 or so. My pulse ox at home is always 99%/100%, but at urgent care it was 96%. I am a major hypocondriac And cant afford to see a doctor so im paranoid I'm dying despite having air hunger since I was just a kid (I remember being 12 having it, nobody ever took it seriously), I have panic attacks a lot. Im worried i have heart failure bc I had covid twice and people say that gives you it :(

Hi! Im going to post my story here because I dont have anywhere else to post it. I am 36 and that makes it difficult to relate to people who are in a similar situation as me as I am young.

Real quick a little about me. Im 36 I ran a lawn and landscape company solo since 2011. I was very physically fit and very strong. I have a wife and 2 teen kiddos and I was living a fairly normal life.

March 25 I had a persistent cough that was really bothering me and that morning I woke my wife up because I was having trouble breathing. She tried to take me to urgent care but it was closed for training so we went to the E.R.. this part I dont remember I dont remember walking into the doors so this is what I was told. In the e.r I kept repeating can't breath chest hurts. They ignored me I layed on the floor and lost consciousness they said I had a near fainting experience. There is more mistreatment here but I dont need to get into that, when they finally got me back they wanted to give me a ct and I coded on the table. As my wife watched them bring me out of the room lifeless they started cpr and for 61 minutes many nurses broke many ribs. A different hospital brought their ecmo equipment to me(apparently this was unheard of) they put me on ecmo and took me to their hospital. For 1 week on was out I was on life support. I did wake up without any brain damage thankfully!

Now they do the many tests and many meds that im on and find out first I had a widowmaker heart attack, and second I have a genetic problem(that both my kids apparently have we just tested them) I have permanent heart failure and am currently at 35%. My frustration to not being able to do what I thought of as simple things is immense. Im wearing a life vest from zoll and will be getting a permanent defibrillator soon.

My frustrations are alot and I hate this life vest it goes off any time I do anything relatively physical. I lost 35lb in hospital and it was all my muscle my physical abilities are stupid right now. The sodium restrictions are so hard I went from eating whatever to rabbit food. I hate sitting around all day "healing" I want to do things im a hyper person.

Thanks for coming to my Ted talk lol.

If you don’t want to read the whole post here are the questions I’d love your experience with:

When getting diagnosed did you need to go through a lot of tests?
How do I manage the anxiety and the weight of a potential HF diagnosis before that initial appointment?
How to prepare for my initial cardiologist appointment?
What is getting treatment for heart failure like?

Okay, so I’m unsure of where exactly to start. I’m 28F and significantly overweight. Please don’t be shitty to me about my weight, I’ve lost 54 lbs in the last year and kept it off and am continuing to do so. I also take responsibility for my weight getting to what it is and I’m sure it doesn’t help my current health problems.

I recently thought I had exercise induced asthma because when I walk to the point I breathe heavily I wheeze and my stamina isn’t getting better. So I got assessed and basically I don’t have any form of asthma. The doctor I saw strongly suggested that I see a cardiologist, my PCP referred me and I’m waiting for scheduling to call me.
For more context my mom died at 46 from hypertrophic cardiomyopathy.
I get so winded from walking from the parking garage to the building I work in that I have to sit on a bench and take a break to catch my breath. The walk is about 1.5 blocks. I get winded walking around the office.
I also had pretty severe lymphedema in my lower legs. I did get treatment for that and it’s mostly under control at home now with compression garments. I do have another area in my midsection that definitely carries extra fluid.
I can’t breathe well when I lay down and it’s gotten to the point where I sleep in a seated position. Which I assume isn’t good for my body.
My heart beats so hard with lite movement, like sweeping my kitchen. But when doctors or providers listen to my heart they’ve all never said anything sounds concerning. Idk if that contributes to anything.

I have decided to make the transition to a heart healthy diet while I’m waiting for this appointment. I even pawned off my higher sodium/highly processed food to a couple neighbors. I’ll be continuing to walk and move my body.

Thank you all for reading. Please share whatever lived experience you’ve had that might be informative.

Does anyone here have one leg swell more than the other? I I've noticed when I do have edema it tends to be more on my left side. Usually my fluid retention is in my abdomen except when I stand for a long period of time.

Seems weird to have one leg/foot retaining more fluid than another.

I guess I’m just posting to get other people’s stories and advice. I’m 24F, never drank, but have vaped since I turned 18 on and off. Recently got out of the ICU after a two week stay from sudden cardiac arrest when I was waking up one morning. I don’t remember any of it, my chest didn’t hurt the night before, I felt fine, and this has never happened. While in the hospital I learned my heart is only functioning at 20%. They want to put in a pacemaker and I have an appointment for the 14th. I guess I’m just scared I won’t wake up in the morning every night when I go to bed, and don’t know where to go from here.

Unfortunately I was diagnosed with heart failure about 2 weeks ago. I'm 41 years old and this just came out of nowhere. I'm pretty active and fit. I was lifting weights 4-5 times a week and doing cardio 2 times per week. My diet was high protein low carb, low fat. I'm around 12% bodyfat. I do use nicotine, but haven't drank but 3-4 time per year for the last 15 years or so. I am just kind of reeling right now. My ejection fraction was 16% when they did my ECG. I am in A-Fib with RVR and probably have been for a few months. I have a blood clot in my atrium and ventricle. I'm just not sure what to expect or where to go from here.

I have changed to a low-sodium, low fat, low sugar diet. I'm getting used to the meds and just kind of trying to take it easy. I have a pretty good care team at my Heart Failure Clinic. They all seem great, I met them on Wednesday and feel like they're going to do everything they can to get me the best recovery possible. I have a cardiac MRI scheduled in about 2 weeks. I'm scheduled to have a TEE followed (hopefully) by a cardioversion. I'm also going to probably get on CPAP and have an appointment set up with the pulmonary specialist as well.

I don't really know why I'm making this post other than to just say, I'm here. I'm glad to be alive. If anyone has any advice for me I welcome that!

I’m doing life on my own and I’m really getting tired of keeping up. I just want to give up this fight just to survive

My dad is 55 and was hospitalized in February 2026 with pneumonia. During that hospitalization they found severe heart failure/cardiomyopathy. Still trying to process it.

He’s worked his entire life in the same factory in pretty rough working conditions to support our family. Blue collar guy, always pushed through everything, never really complained much. He smoked for years (quit 2 years ago) and was an alcoholic for a long time, though he drinks much less now.

We got the results from his second echo today and there hasn’t really been meaningful improvement aside from the swelling/edema finally going away after hospitalization and him losing about 16 pounds of fluid. His EF is still under 20%. The report mentions severe nonischemic cardiomyopathy, enlarged heart chambers, valve problems, and possible severe low-flow/low-gradient aortic stenosis. His cath showed nonobstructive coronary disease, so they don’t think blocked arteries are the main cause. They also ordered a cardiac MRI to rule out amyloidosis.

What’s been especially hard is watching him struggle with the medications and the mental side of all this. His blood pressure runs low and he’s been getting dizzy/lightheaded standing up or bending over. He ended up stopping Jardiance because the dizziness got too overwhelming. He still gets short of breath and fatigued really easily even though he’s doing cardiac rehab/cardio therapy.

I think I’m struggling with understanding what’s “normal” in heart failure treatment. Do a lot of people have trouble tolerating these medications? Do doctors usually keep adjusting things until they find something tolerable? Or do people just kind of have to suffer through side effects because the consequences of stopping are worse?

I’m trying really hard to empathize with him because I know this has probably shattered his sense of normal. I think for someone who spent his whole life working physically and supporting his family, suddenly becoming weak, dizzy, exhausted, and dependent on doctors/medications is mentally brutal. It’s strange watching someone who always worked through pain suddenly become physically fragile. I just feel sad and sometimes angry seeing him go through this.

Would really appreciate hearing from anyone who’s been through severe heart failure, very low EF, valve disease, or caring for a parent dealing with this. What helped emotionally? What questions should we be asking cardiology?

TL;DR: My 55-year-old dad was hospitalized with pneumonia in Feb 2026 and diagnosed with severe heart failure/cardiomyopathy (EF <20%). Second echo still shows severe dysfunction with possible severe aortic stenosis despite fluid improvement. He’s struggling with dizziness and medication side effects and I’m struggling with sadness and anger. Looking for support/advice from people who’ve been through similar situations. Thank you for your support ❤️

I was at the store the other day and my Mom lifted the 40 bottle case of water cause lifting is something she won’t let me do if it’s heavy as it will give me a little flare up. Anyways this lady walks up and is like why you have your Mom lifting the water and I tensed up because it’s such a sensitive subject when your disability isn’t visible so in the best way I can I said I have a chronic condition so could you mind your business. It’s truly exhausting honestly I used to lift heavy things and do all things by myself now I’m feeling defeated. What’s something during this journey you’re realizing is hard?

I had 4 episodes of paroxysmal AF. Each lasting about 5-6 hours, mostly post alcohol or exhaustion. Saw that My EF was down to 35% with mild dilation but no scarring etc. So I was told it could reverse and was put on Sacubatril /valsartan, beta blockers etc, the whole regime. Been about a year and no episodes since.

Holter is clean.

EF is back up to 52% with no dilation.

Avoiding alcohol or poor lifestyle choices now.

I am worried whether AF will come back or HF. Medication is supposed to be continued. But some people on here say that EP and ablation is the only way to properly slow it down. My cardiologist had said we will manage with medications first. Is that the right approach?

So I been having edema in my legs for around 6/9 months, estimated. I have a high BNP and high blood pressure. I’m waiting to go to see a cardiologist but I have an appointment soon. I work at a job that requires a lot of standing and movement, high energy. I’m so exhausted I don’t know what to do anymore. It takes all of me not to just lay down on the floor. My chest is sore all the time and my legs and arms are aching all the time. I also have these wild sweating fits that just randomly happen and I get really really sore and tired.

My main point is I would appreciate any advice to help me get through my work day without feeling like I’m going to end up on the floor and being very hard to walk at the end of the day. My work is not very supportive of me sitting down.

I have recently been diagnosed with Heart failure with preserved ejection fraction (HFpEF) or Chronic diastolic (congestive) heart failure depending on what medical office terminology I use. This is following a right heart cath of March this year. (with a wedge test)

I am pushing back against this diagnosis because the right heart cath was during a very atypical event, specifically a high blood pressure and water retention (it was super high and this like never happened before.) I'm confident in what I was doing (crazy amounts of sodium and fluid intake increases) were to blame for this.

I saw a cardiologist for a second opinion, who thinks I don't have a cardiology issue. This was one abnormal result. I've had echos and a previous right heart cath last year with an exercise component.

My normal cardiologist, was technically their attending as my cardiologist is a resident who kind of just pawned me off onto Pulmonary said that no matter what I did, the diagnosis would remain the same.

My pulmonary doctor is like you need to see cardiology though I do have a follow-up in June. He is retiring. The second opinion cardiologist is also retiring so no follow up with them.

I did push heavily for my pulmonary doctor to order a Heart MRI which is scheduled for later this month. Though I may need to go through the prior auth and all that process again because I might have to go to a different City to have it done due to weight.

Due to recent events with doctors recently, I've been writing some very spicy letters that are fairly comprehensive, after all I have like 4 years of medical history, where 2 years of that is at least 1,000 pages. My normal cardiologist, so the resident did say he felt bad but honestly I just want doctors to run test. Most of what I'm asking for is blood work.

I'm essentially pushing back against the diagnosis because I am tired of doctors dismissing the Long COVID diagnosis that I already have for various reasons. I want answers, but I also want accurate answers. I'm not looking for a cure. My shortness of breath (on exertion), lightheadness, and dizziness symptoms are not the main symptoms that I am concerned about. I am concerned about my physical fatigue and cognitive fatigue (mostly this) but heart failure doesn't explain the cognitive fatigue. I didn't push Cardiology to blame the heart failure on COVID, even though I should. I have a follow up in August.

I've been prescribed Farxiga which I am very reluctant to take. I've known about this medication for months already. That means I've done enough research to have significant concerns over what it does and the potential side effects.

I am growing very tired of no doctor wanting to take responsibility and ownership.

Edit1: I have taken Faxriga. I'm not thrilled with this decision. I haven't spend much time on this but my fatigues (physical and cognitive) are constant but are fairly low level. At the end of the day I would describe what I have is an endurance issue, which means I have to be doing something to effectively reach an accelerated limit. I try not to do research as I shouldn't have to be my own doctor but from what I've glanced at fatigue seems to be a constant, not shifting in capacity.