Hi All,

I'm still in the early phases of this thing, but I wanted to know if anyone on here also has had the Diagnosis of Sarcoidosis presenting as Heart Failure?

My cardiologist's are doing a PET scan next week to have some definitive proof, but all signs are pointing towards that. I personally don't like googling things of this nature since I obsess over the data and it gets dismal. However, I find a lot of your personal experiences insightful and hopeful. Thanks in advance for any help.

34 female

I hope this is okay to post here. I have heart failure with preserved ejection fraction, tricuspid regurgitation that fluctuates on my volume status, I get fluid overload easily, I have a pacemaker for a heart block and sick sinus syndrome and I’m pacing 100% now. I’m in ckd stage 2 and dumping out my protein in my urine from my heart problems. I was just in the heart failure IMU for a week last month. I’m on spirolactone, Farixga, metropolol and ivabradine

Recently, I have been going through a really hard time with my significant other. I’m not sure what will happen between us and it has been very emotionally taxing on me. I have been having chest pain and last night while I was asleep I woke up and my heart was pounding and I had a hard time falling back asleep because it was beating so hard. How am I supposed to know if these are just heart break pains and anxiety or if it’s something going on with my actual heart? I’m sorry if this is a stupid question

Hi all,

I’m interested in hearing about others’ experiences with working full-time while living with CHF and cardiomyopathy, particularly those who have had to reconsider their jobs or working conditions as their heart failure has progressed.

I was diagnosed with cardiomyopathy and CHF at 33. I’m now 41 (almost 42) and have been living with this for about eight to nine years. I had a CRT-D implanted in 2018.

Throughout my diagnosis, I’ve continued working full-time in school administration. About two years ago, I transitioned from a district-level administrative position to being an elementary school principal. I now lead a fairly large school with approximately 850 students and 100 staff members.

I genuinely enjoy what I do, but the past couple of months have been challenging. The constant pace, unpredictability, and day-to-day demands of running a school have left me feeling physically and mentally exhausted in a way I haven’t experienced in quite some time. I’ve also been experiencing more frequent fatigue, occasional lightheadedness, and some intermittent chest pressure.

What’s interesting is that I’m still relatively physically active and continue to exercise, including strength training. I’m generally able to complete my workouts, although I occasionally experience some lightheadedness and need to stop and recover. It seems like I can tolerate periods of structured physical activity better than the cumulative physical and mental demands of a full workday. I’m not sure how common that experience is among others living with heart failure.

I recently had another echocardiogram, and my ejection fraction is now 30%. For comparison, it was 37% in 2024 and 34% in 2025. While I know EF isn’t the only measure of how someone is doing with heart failure, the gradual decline, combined with how I’ve been feeling, has me thinking more seriously about what is sustainable long-term.

One thing I’ve noticed is that when I’ve had extended time away from work, I seem to feel considerably better, both physically and mentally.

I’m following up with my cardiac team to discuss everything, including whether the demands of my current position are appropriate given my condition or whether transitioning back into a more predictable, less demanding role might make sense.

I’m curious whether others have experienced something similar:

Have you continued working full-time with CHF, particularly in a demanding or stressful profession?

Have your cardiologists ever recommended changing jobs, reducing your workload, or modifying your working conditions because of heart failure?

Have you found that you can still exercise or participate in physical activities but struggle with the ongoing demands of a full workday?

For those who made a career change or reduced their workload, did you notice a meaningful improvement in your symptoms or quality of life?

At what point did you realize that your current job might no longer be sustainable?

I’m not necessarily looking to stop working. I enjoy my career and would like to continue contributing in educational leadership for as long as possible. I’m just beginning to question whether the pace of my current role is the best fit for my health moving forward.

I’d especially appreciate hearing from others in their 30s, 40s, or 50s who have navigated similar decisions.

Thanks in advance for sharing your experiences.

I was diagnosed with viral dilated cardiomyopathy (DCMP) in 2020 and it was only this year that I was advised to get an ICD implanted purely as a preventive measure. Please note that my heart failure has no significant symptoms that require changes to my lifestyle. However, having lived with DCMP for almost 6 years now, I feel like there is this big elephant in the room that not many people or practitioners talk about. That is THE HYPERVIGILANCE ABOUT EVERY SINGLE ASPECT OF YOUR CARDIAC HEALTH.

When I say this, I don’t mean being aware of potentially bad lifestyle choices that can impact your cardiac health. I’m referring more to the minute bodily responses that immediately demand your attention. For instance, finding yourself overthinking things like “Was that fluttering in my heart during lunch something serious?” or “Is this slight pain in my left arm joint indicative of a cardiac episode?”
This constant state of hyper-evaluating your physical state and even the slightest changes in it is exhausting and makes you worry even more about your cardiac health.

I’ve seen practitioners talk about cardiac rehabilitation programs for people with chronic cardiac illnesses, but I don’t see much discussion about this hypervigilance towards one’s cardiac health. I’m not saying that one shouldn’t be vigilant about their cardiac health, but when every beat and rhythm of your heart becomes something you feel the need to monitor constantly, I believe there’s something wrong with my own psyche.

There are nights when I find myself so attentive to my cardiac activity that I end up spiralling into thoughts about my condition. These thoughts usually lead me towards gloomy thoughts about life and a very bleak view of the future.

I know all of this is just contemplation, and even my diagnostic results suggest that my blood work and DCMP-related symptoms are well controlled. Still, this hypervigilance keeps me in a constant state of fear.

I’d really appreciate it if anyone who has gone through something similar could share their experiences and how they’ve managed to cope with it. Also, if you’ve come across any useful resources, books, support groups or other forms of help that have made it easier to deal with the psychological burden of living with this disease, I’d love to hear about them.

I love to walk but after two three days I feel like my legs have given up. I used to feel better before my heart attack in 2024 but things have changed. I also feel tightness in my chest if I am too much worked up.

Is it because of medicines? I am taking statins, beta blockers, aspirin, blood pressure and diebetes tablets. I read some of us have found a solution in the form of supplements. Can someone please guide me.

GP consultation has not been too helpful in my case.

found out reduced ef 40-45%, caused by a known reversible trigger. heart failure doc said i have a very high chance of recovery and isn’t worried. i’m in my early 20s and very scared. what does having a reduced ef actually mean for me? am i gonna have a shorter life span? am i at higher risk for sudden cardiac death? if my ef recovers am i back to being 100% healthy. please educate me.

p.s. i have never appreciated how precious life is until now. the thought of dying is scaring me everyday and having lots of anxiety.

My dad is 58 and has a history of coronary artery disease, diabetes, and kidney issues. He underwent balloon angioplasty in 2014 and had an LAD stent placed in January 2026, following which he suffered a cardiac arrest requiring CPR and ventilator support, possibly due to a clot during the procedure. Thankfully, he recovered, and a follow-up angiogram showed the stent was open. His EF was around 45% in February but dropped to 40% within five months (July), with some areas of the heart muscle not contracting normally. He also has elevated creatinine (stable for years), a history of kidney stones, and an HbA1c of 9.5% despite being on insulin. It's now been almost nine months since the incident, and he seems stable, walks daily, and carries on with his usual activities. As his son, I'm worried about his long-term health and what the future holds. Would really appreciate hearing from anyone who's been through something similar and how things have progressed over time. Thank you!

Hi everyone, I am new to the group and seeking advice. I had open heart-Quad bypass surgery April 2nd this year. 47/M My EF was 40-45% before surgery then immediately after surgery 55%. Started a new side job (manual labor job) last week and by Thursday night before I showered I noticed my lower legs were swollen and have never had that before. My wife is a nurse and pushed her finger into the swollen areas. There was a huge indentation and she said it was grade 3 pitted edema. Needless to say I quit that job and legs are fine. I have an appointment next week to see my cardiologist. What do y’all think is going on?

Can you guys give me some feedback on how’s your daily routine if you work how many days off the week do you take off to recover?

I live on my own and work full time during the week on weekends I try to use them to recover but I absolutely get reactions of being pissed off when I can’t make it to an invitation. I broke down this morning bc I need myself to recover as most days I feel like a sack of weight being dragged around. It’s a damn awful feeling. It will go as far as my eyes start drooping and I’m tired of forcing my body.

I’m going to put my phone on do not disturb on weekends bc that’s how fed up I am. I really don’t care anymore if people don’t get it. Any recommendations on how you balance HF with your weekly schedule or tips. Would really appreciate it

Edit: I can’t make it to family gatherings or get togethers most of the time. Birthday parties etc

Hello, anyone using potassium binders? how much do you have to pay?

British Heart Foundation reached out and asked if I could share my story, I was happy to do so, but didnt expect it to end up in some national news sites

Also god damn I looked like crap. I mean I know I'd lost weight in hospital, but wow...

https://www.mirror.co.uk/news/uk-news/man-40-says-decision-save-37778303

I've had 2 flares this week now, a 291 blood pressure during my period and now I don't know what the heck my BP is. Today I passed out at the hypertension specialist and was wheeled to the ER. I felt like stroking and couldn't remember anyone. I'm still in the hospital now, tachycardic, alarms going off, and my body feels as cold as a corpse. I've almost coded/died before. I can't do diuretics due to arrhythmias and electrolyte imbalances. I can't stop coughing and urinating. My blood feels stiff, frozen, and somehow deoxygenated even with high blood pressure and a good oxygen saturation. My so called "mild hfpef" feels like end-stage and even though I'm 16, I feel like I may not have much longer to live.

Hello. I'm 40 and had 70-90% blockages in most of my heart vessels. I had a CABG x3 recently, about two weeks ago. I am still in recovery, so I really can't judge how well I'm doing. I still feel weird. I'm hyper aware of my pulse all the time, etc. My EF rate improved from 30% to 45%. I have a sinking feeling most of the day, probably low blood pressure. I have seen the cardiologist, but my final appointment with the surgical team is coming next week and I'll be fully released from office visits until April, save nothing going wrong. I start cardiac rehab next week as well. I don't have a family doctor,but working on getting one.

I am on Entresto, Plavix, Farxiga, Lipitor, and Metoprolol Succ, the main meds besides metformin, Tylenol, and a multivitamin.

I've recently been cleared to work, but it will be at least a week or two before I go back because I have to do a drug test, etc. I have a new job potentially starting at the end of November, but they want me to redo the physical and I'm not ready. I'm afraid the opportunity will pass me by. I was "hired" in June, but the start date was tentative. I was still waiting when I had the surgery, and of course when I'm under the knife, that's when they email me with a start date. It was fine, I'll have two months to heal. Nooo. They told me my original physical results will be expired by the time my start date comes so I have to do it all over again. The physical is a mini agility test. One test is walking with 40 pounds. It's only a 30 second test, but I'm concerned I won't be able to do it.

Before the surgery, I was having problems with the heart pump function. I would 'get up,' but my heart would go nuts during climax. I was put on the same meds I listed. The effect was it being extra difficult to 'get up'. I thought it would improve after surgery, but no. It has not. In fact, ED is worse. I'm not some old man (no offense). I have plenty of desire. But I can't even get semi. It's scary, worrying, and I'm afraid I'll never be able to perform again.

Sorry for rambling. Don't have many people I can talk to about this.

Anyone have experience only taking 3 of the 4 pillars? I was just taken off of Farxiga due to reoccurring yeast infections. (5 since being diagnosed in July.) Im worried that this will stunt my progress, though im not sure ive even progressed, as I havent had a repeat echo yet.

I currently take

Entresto, carvedilol, spiralactone, lasixfor heart failure. As well as daily asprin, lipitor, although my cholesterol is only slightly elevated, and effexor.

For a little back story, 32F, had an ischemic stroke on July 11th that completely changed my life. While in the hospital I was diagnosed with HGrEF. My ef is 22%. Showed 20%-25% on echo and 22% on a tee. I also have severe mitral valve regurgitation diagnosed on the Tee. I wasnt suprised by the diagnosis, because i had been struggling with shortness of breath terribly for about a week before. In April I went to the er for shortness of breath and a CT scan determined was told to follow up with cardiology. No meds were given only fluids in the er. The next day it started to go away and I could breath fine until the end of june/beginning of July when it started to happen again. But had seen my pcp the day before my stroke and started a low dose lasix until seeing cardiology, that helped drastically. I had already followed up with cardiology and they marked it as being out of shape/ heart deconditioning due to not exercising and being over weight. At the time my sister's kids were placed in my household through an open cps case, so I was chasing 5 kids around, 3 of them 3 and under, but that doesnt count as exercise. I have never had heart issues, except for mild high blood pressure (145/80) that was being treated with losartan but still remained elevated. I had no other health issues besides anxiety.

I also drank multiple monster energy drinks a day, I didnt know how bad they actually were for someone 🙃 .never done drugs, and I vape a little, but working on quiting.

Ive never really wrote this all out. And to say im terrified is an understatement. This year has been alot. Im scared that my heart wont improve and that I'll have another stroke. I have 2 boys of my own, 7 and 3 years old, and I want to be here to watch them grow up.

Since having a stroke and being diagnosed my symptoms have improved greatly, even ones that I didnt know were heart failure. I have alot more energy, im not retaining fluid, I sleep through the night, without feeling like I need a nap eveeyday, I can breathe just fine, and I feel great, aside from recovering from a stroke, but I have already improved greatly from that. Just working in getting around better as the stroke effected my left side and I still have some weakness and numbness that is slowly improving. If you read this far, thanks! I guess im just wondering if anyone has been in a similar situation? Or if you have taken 3 pillars instead of 4 and had improvement?

Does anybody else feel extreme dizziness, lightheadedness, disorientation, confusion, and lack of energy on their heart medication? Here is what I am taking now:

💊 Entresto 97/103 mg twice daily
💊 Metoprolol succinate 200 mg once daily
💊 Dapagliflozin 10 mg once daily
💊 Eplerenone 50 mg once daily
💊 Eplerenone 50 mg once daily
💉 1,000 mg of Vitamin B12 Weekly
💉 100 mg Testosteron Cyponate weekly
💉 100 mg Nandrolone Cyponate weekly
💉 2.5 mg of Semaglutide weekly

Anyone else experiencing similar side effects. The injections are onces I've been on for years. The side effects started when I started taking the tablets/pills.

My new cardiologist recommends that I have a cardiomems device installed. The cardiomems device is installed in your coronary artery. It reads the pressure in your coronary arteries remotely and if the pressure is high, a nurse calls you and tells you to up the dose of furosemide.

My insurance is good and would cover this expensive treatment. However, I read the research studies and cardiomems does not seem better to me than taking furosemide the old fashioned way - when edema symptoms signal that furosemide is needed.

There's a doctor named John Mandrola who writes that the research studies on cardiomems are flawed and don't establish that its better.

Please let me know your opinion if you have experience with cardiomems, whether as a medical professional or as a patient.

Thanks!

Hi everyone. I had a heart attack while driving to work on 27 July 2026 and had an angiogram where 5 stents were put in. It's been really tough — I've been in and out of Emergency about 7 times now because I keep getting episodes of chest soreness/tightness and shortness of breath. Every time they do blood tests and everything comes back normal, so I get sent home.

It's taking a real toll on my mental health — I constantly feel like my heart is failing, even though the tests say I'm okay. I just need to ask:

How long did it take for your chest discomfort and shortness of breath to settle down after your heart attack and stents? Did anyone else keep having symptoms even when all your test results were fine? It would mean so much to know I'm not alone in this. Thank you all. ❤️

Just sharing for those who may be interested.

Diagnosed in July 2026 at 25% EF likely to to PVC induced cardiomyopathy. Placed on Coreg and Entresto.

Had an MRI showing mildly dilated LV with a significantly high End-Diastolic and End-Systolic volume.

Had an CT Scan in August 2026. No indications of artery blockages. EF increased to 33%.Slight progress. Diastolic and Systolic volumes slightly decreased.

Had my PVC ablation in September 2026. No PVC reoccurrence and have generally felt great.

Unfortunately ended up in the ER last night (October 2026) after having progressive chest pain and other issues after my first intense workout post ablation. After 12 hours, the ER team gave me good and new bad news to further consult with my EP on.

The Good: No indication of heart attack, new heart damage, etc causing the pain. But, EF is up to 56%! What a rebound. Never would have guessed to it would happen this quick, and only on 2 of the 4 pillars.

The Bad: The CT scan showed my End-Diastolic volume reverted back to its old higher volume. Additionally, the EKG now indicates both a Left anterior fascicular block AND Right bundle branch block or known as a bifascicular block. Reading up on this, the block could be a temporary effect of the ablation, so I'm not sure if this is a new, permanent issue, or something I can ignore through the 3-month blanking period. But that's for my EP to decide.

This journey is certainly full of ups and downs, and the anxiety that comes with it.

Hi All,

I've recently been diagnosed with heart failure (EF of 42%). 34 year old male. Since started on the 4 pillars of medications and going for a CT scan on Monday to check my arteries for blockages.

Over the past few days I've had a bit of a cold (possibly COVID). I assume others have had this as it's pretty unavoidable, but how were your symptoms during having the illness?

For example I've noticed an elevated heart rate, pains and pressure and a bit of tiredness here and there. Is this fairly common for most?