r/Heartfailure

Cardiologist wants me to do a bnp test along with iron, ferratin, cmp & cbc. I declined the bnp at first because I truly don’t want to know the results. Is heart failure scary?

Initially told it was a viral issue. My EF in 2017 was 38, it’s closer to 50 now.

I’m relatively young and kind of live in a vacuum where I don’t know what’s normal. I’d love to list some things that I experience to see if it’s normal. I’m on low dose metoprolol and have anxiety which really blurs the line between heart issues and anxiety issues.

Anyway here’s some of the things I experience randomly over the years. These aren’t constant. They can come in waves:

-Positional heart palpitations (lying on my left side or pushing weights that are chest heavy or cause core tension)
-random dizziness that comes and goes.
-palpitations where my heart doesn’t race just my breath being taken away
-exercise intolerance for a month or more after I get sick, even if it’s minor.
-being able to run 10 miles one day and then feeling drained a week later.
-being woken up in the middle of the night and heart racing.
-being affected by not having enough water even if I didn’t do any activity.

I’ve sort of convinced myself that my vagus nerve is the issue. They’re such random things and honestly most weeks I work out 3x and run 3x with no issues. It’s just when the issues come it feels like dying.

Looking for insight: unexplained heart scarring after sudden cardiac arrest
I’m hoping someone in this community may have experienced something similar or can point us in the right direction.
My husband is in his early 40s and recently suffered a sudden cardiac arrest while exercising at the gym. He was active, energetic, not overweight, and had no idea that he had a serious heart problem before this happened.
Thankfully, he survived and now has an ICD/pacemaker for protection.
One finding from the day of his cardiac arrest that has always stood out to me is that when he arrived at the ER, his potassium was extremely low at 2.6 mmol/L. It was later corrected. We still don’t fully understand what role, if any, that severe hypokalemia may have played in triggering the cardiac arrest, especially in combination with the heart scar that was later discovered.
His cardiac workup showed no significant coronary blockage, so his doctors do not believe this was a typical heart attack.
His heart function was initially reduced after the arrest, with an ejection fraction around 35–40%, and it subsequently improved to approximately 45%.
The finding that concerns me most is his cardiac MRI, which showed scarring/fibrosis involving the lower portion of his heart with what was described to us as a ring-like pattern. We were told that this scar could have created the electrical instability that led to his cardiac arrest.
The big question we still have is: Why does a relatively young, active person have this type of heart scar in the first place?
Genetic cardiomyopathy was considered, but his genetic testing came back negative. At this point, we still do not have a clear explanation for how the scar developed.
We have essentially been told to continue his heart medications, allow the ICD to monitor/protect him, repeat imaging over time, and see whether the scarring progresses.
I completely understand the importance of monitoring, but after surviving a sudden cardiac arrest, I’m not comfortable simply waiting without trying harder to understand the underlying cause.
I would love to hear from anyone who has dealt with a similar combination:
Sudden cardiac arrest during exercise
Potassium of 2.6 mmol/L at presentation
No significant coronary blockage
Cardiac MRI showing a ring-like/circumferential pattern of myocardial scarring
Reduced EF that subsequently improved
Negative genetic cardiomyopathy testing
No definite explanation for the myocardial fibrosis/scarring
Were you eventually given a diagnosis?
Did your doctors investigate previous myocarditis, cardiac sarcoidosis or another inflammatory condition, arrhythmogenic cardiomyopathy, autoimmune disease, previous viral infection, or other causes of nonischemic myocardial scarring? At first they thought it may have been covid vaccine, an internal virus.

I’m particularly interested in whether anyone was evaluated with additional testing such as a cardiac FDG-PET scan, repeat cardiac MRI, inflammatory/autoimmune testing, more extensive genetic testing, or evaluation by a cardiomyopathy specialist/electrophysiologist.
And for anyone knowledgeable about this area: Could potassium as low as 2.6 have been an important trigger for the cardiac arrest in someone who already had myocardial scarring, even if the low potassium itself didn’t cause the scar?
We are pursuing another medical opinion. I’m not looking for an internet diagnosis—I’m trying to educate myself so we can advocate for a thorough evaluation and make sure we’re not overlooking something important.
If you’ve experienced anything similar, or you’re a medical professional familiar with this type of cardiac MRI/scar pattern, I would be extremely grateful for any insight about what questions we should be asking and what type of specialist we should consider seeing next.

Thank you!!!

Non-ischemic, most likely alcoholic cardiomyopothy.

EF was 14% and arteries looked "perfect" during left/right heart cath this morning.

Hopefully, the damage is reversible. Overall, this is really great news.

However, he can't drive or fly to work with the life vest. 3mos in a vest is gonna be brutal for him. Is there any chance we could request he get checked at 2mos instead of 3?

Mentally, physically, financially, this is all going to be really hard. It's only been 5 days and I'm nearing the point of collapse from exhaustion. 😭

ETA: He is home now and doing pretty well on the life vest!

For USA based patients. Perfect Focus Research ( www.perfectfocusresearch.com) is conducting a market research study with Heart Failure Patients. This is a 60 minute discussion with a moderator and each participant receives an Honorarium of $150.00 . Note: we are seeking to speak with patients who were hospitalized in the past 12 months for HF. This is pure market research. all respondents remain anonymous. We offer honorarium for your feedback to what is presented. You will need to be screened to ensure you qualify. This is standard market research. This is NOT a clinical trial. IF you are interested DM me here and I'll respond with more info. Thanks PFR.

So im 37m had a massive heart attack in March which resulted in heart failure it was a whole mess. Anyway people here and my doc hyped up cardiac rehab as this miracle program.

Well mine feels really lame first we have these 30 min "classes" that are information that I already got from doctors and dietitians and elementary school classes ie: how to read nutrition facts.... like 6th grade stuff.

After these really pointless classes we get maybe 40 mins of exercise and I use that word loosely. They have us walking on treadmill at a moderate pace last week they said turn it up and I was finally getting good exercise breaking a sweat and they told me to stop my heartache got to high.. I exercise daily either 1-2 hours of beating the boxing bag, cycling, weights whatever and am fine I genuinely feel like this program is an insurance scam

Anyone else feel this way?

Hi everyone!

36M here, and newly inducted to the Heart Failure club. Started feeling fairly winded during gym exercise and figured I needed to go see my PCP. In in office EKG indicated I was having PVCs (while, as I understand now, my Apple Watch has Beene telling me as my HR would "fall" to below 40 BPM, but it was the watch not really reading my HR correctly due to the PCVs). Anyway, Holter Monitor showed a 31% burden.

Next step Cardiologist. Had an Echo done. 25% EF, mildly dilated LV, mild wall thickness consistent with mild concentric hypertrophy, global hypokinesis of the LV.

Had an MRI, which apparelnty the machine doesn't like due to the PVCs. 26% EF. Systolic and Diastolic volumes were quite high compared to normal rages (I read this may be potentially normal for tall man like myself). No remarkable wall thickness contradictory to Echo. The contrast was delayed at the mid and basal LV segments, so perhaps I have a combo of the PVCs and prior myopathy causing the HF.

Waiting for my CT scan.

Currently on Coreg 3.125mg2x/day, waiting to start Entresto due to Insurance issues.

Have an ablation scheduled for the PCVs to hopefully help the heart out more.

Hopeful that, since my symptoms today don't generally impact my day to day, the HF diagnosis will end up being on the back of my mind instead of forefront of my mind.

I welcome everyone's thoughts, wisdom, opinions, etc.

My (23NB) mom (55F) has stage 2 diastolic heart failure. I was wondering if anyone knows about the realities of what it's like to live with that, how long people live with it, what complications may arise, anything really. I've tried to research it on my own but it always sends me into a panic spiral and I just want to throw up. I think hearing it from real people will make digesting the information a lot easier than robotic articles.

A little more information: She's had 3 heart attacks over the past 1.5 years. As well as 2 strokes directly after angiographies, one inducing a brain bleed. I'm pretty sure it's related cuz heart, but not sure if that'll help anyone with information. She's had a stent put in due to a blockage (that caused the heart attacks) and likely has another. There was talk of an open heart surgery at some point, but I don't know how soon that'll be or the super exact details of why it needs to be done. Likely because the last attempt at a stent caused damage? Not sure.

Anyways, any help understanding this all would be appreciated. You can be as real/blunt as needed. I just think talking to humans is better than the google rabbit hole.

So just a brief background, I have hypertrophic cardiomyopathy (hcm) and it was discovered at the age of 13 after a cardiac arrest, skip forward several years, now 37 with fairly advanced heart failure, considering transplant work up and I attempted to perform a V02 test last December to get a better idea of where I was at and only a few minutes in, I told the people running the test my legs were tired and I needed to sit down and I just did not want to push myself much further because I didn't want to pass out/vomit in the mask. I bombed the test however this test was done early in the morning before I could really eat/digest something, drink enough water etc. Thinking about it now, I think my anxiety got the better of me and my body just told me to stop because I have been told all my life to not push myself when I'm tired. Now, I have to get on this treadmill and push myself until I'm tired. I know I have trained medical staff there and I am good hands but I'm still nervous to repeat it. I think I'm going to do really bad again. The physicians don't feel my test correlates with how symptomatic I am which is not really at all until I am physically pushing myself. Anybody have experience with finding a way to calm or center yourself prior to the test to reduce that anxiety level? I am dreading this test.

Has anyone had heart failure and kidney failure? If so what’s the experience been like you guys?

I’ve had heart failure for 5 years. In my country the only treatment available is propranolol.
Symptoms keep getting worse every year. I can only walk outside for about 5 minutes on flat or slightly sloping ground. I can’t climb stairs — I tried once two years ago and nearly died from the intense palpitations.
I urinate every 30 minutes, sometimes every 15 minutes. I think I’m heading toward kidney failure. My weight keeps increasing no matter what. I eat only 300 g of food a day just to reduce toilet trips, but it only helps a little.
I feel like someone is choking me because of breathing problems, severe chest pain, and palpitations. Even going to the toilet takes enormous effort.
With how things are now, I think I might make it to mid-2027… and then I’ll be gone.
Thanks for listening.​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​ im sorry for everyone who is going through a painful journeys of heart failure.

Hey, I have started a blog for living life as a first time dad in his late twenties with an early stage heartfailure diagnosis.

The purpose of the blog is to help grieve my diagnosis and process my own thoughts by putting them down on 'paper'. If I can help one or two people along the way then this will be even more of a success to me.

If you know anyone with heartfailure this may help, or if you think it will help yourself then please take a look at this.

My first blog post covers the process of being diagnosed, how i felt upon recieving my diagnosis and how I now plan to accept these new changes. This may help someone similar understand what they may face if they are currently chasing a diagnosis.

Thank you :)

Hi All,

New here. I'm very grateful this place exists, and thank you for any contributions you make. I was diagnosed with Heart Failure just about one month ago. 40 yr old Male, fit but not athletic. Non smoker, ate conservatively with a an occasional cheat day. Social drinker on weekends. etc. The doctors treating me as well as my primary and the one at the hospital think my Heart Failure is from repeated viral infections spreading from lungs and surrounding environs to heart. That or sarcoidosis which was latent for a long time. But I digress.

Before this morass, I was prescribed (and happily taking) 20ml Adderall XR daily for my ADHD. It was the only medication I was taking and it dramatically effects the quality of my life. It helped me sit patiently, be a better listener, enjoy small moments in life, sleep better, excel at work, and a myriad of other things. It allowed me to the very best, truest, version of myself. In short, it was a very important medication to me.

My question is if anyone here has been put on the 4 pillars of HF, and was able to resume adderall. Both of my Cardiologists are of the opinion that I probably can resume taking it 'one day' and my primary says "talk to your Cardiologists about this." All the answers are a little vague.

It also occurs to me there are other non-stimulant ADHD meds out there, but I have no experience with them. Thank you in advance for any advice.

I am wondering if anyone has any experience with Dr. Caldwell Esselstyn's diet. I have a friend whose husband (15 years older than she) is fixated on Dr. Esselstyn's diet and refuses medical intervention although he has more than 70 percent blockage. He has already had a TIA and paralysis in one side of the face. Doctors have told him that "we can't help you if you insist on listening to this guru and don't even listen to anything we have to say." He talks over the medical professionals he sees, and is incredibly rude. He has been threatening suicide if he does not get better. He will not listen to anyone. In the meantime, he is obsessing over his blood pressure, heart rate and oxygen levels, which he constantly monitors with an Apple watch. He just got out of the hospital a second time after filling up with fluid and being told he has a 35 percent ejection fraction of the heart. He lost about 18 lbs of fluid with the Lasix injections and maintains that the pills do not work as well as the injections. I know this isn't true as I take Lasix 40 mg myself every day, and it works fine. He says it makes him sick to his stomach but he will not take it with food, and you should not take it on an empty stomach. He says he's not going to take any medications, but is just going to follow this diet. I find that being around him is increasingly intolerable and when I was there for dinner the other night, he got furiously angry with me when I told him to be careful about following a diet prescribed by someone who has not physically examined him and knows nothing about him. My reason for writing this post is to ask if anyone else has dealt with someone like this and how they have handled it.

I was getting ready for the office one morning when I suddenly experienced severe chest pain. I tried to bear it for a few hours, but the pain kept getting worse, so I went to the hospital.

The doctors immediately moved me to the emergency department and then to the cath lab for an angiography. They found a 100% blockage caused by a blood clot in one of my heart arteries and performed an angioplasty to remove it.

I was told that I was extremely lucky to have survived. I spent two days in the ICU before being moved to a regular room.

Since then

I keep asking myself: what's the point of living?

Why did I go through so much struggle if everything could have disappeared in a matter of minutes? What's the point of life if I'm told I can't push myself anymore?

I've always loved the grind. I loved the pressure. It made me feel alive. Sure, it was stressful, but that stress was part of the fun. Now everyone tells me to live a stress-free life, and honestly, that feels absurd to me. The person I was thrived on challenges.

I can't even think about dating right now. Not because I don't want to, but because I don't want someone to depend on me and then have to suffer if something like this happens again.

I love my parents, and they love me. They've taken better care of me than I could have ever imagined. But most of the time, I feel like a burden to them. I know they don't see me that way, but it's hard not to feel it.

I loved cricket. Now I can't play for months, maybe even longer. I used to tell people, "If you ever see me stop playing cricket, then something has gone seriously wrong in my life." And somehow, that actually happened.

I thought an experience like this would bring clarity. I thought I'd come out of it with some grand realization about life.

Instead, I'm left with self-doubt.

Existential questions.

The constant thought of "Why me?"

It feels like I'm going to miss out on so much of life, so much fun, so much of what made me who I am, far earlier than I ever imagined.

Maybe these thoughts will fade with time. Maybe they won't. But right now, this is honestly how I feel.

Was in the hospital last Christmas/New Years. EF <30%. Been on the typical cocktail of heart failure drugs since then, low sodium diet, felt like shit every single day from side effects but I stuck with the program. Look at my echo results from this week. Wanted to share with people who understand.

https://preview.redd.it/92so7apge7jh1.png?width=602&format=png&auto=webp&s=70a009e186cc8492882106e1c57fa9acde7a073b

Had my annual visit with the HCM experts in my state. The doc noticed I’m having increased HCM symptoms, I now have class II heart failure, AND I’ve technically been pre-diabetic for a few years. My PCP has never done anything to address the pre-diabetes - but the HCM doc put me on Jardiance since that addresses both issues at once. I just love my HCM doctor! Feels so good to get comprehensive medical care.

I had a heart attack about 2 months ago; it was a STEMI in the LAD (widowmaker). The stent was placed about 1.5-2 hours from the onset. I was discharged with an EF of 45.
Since then, I have lost 8 kg, improved my diet, started walking and take my medications consistently. I feel better now, but
Today at my 2-month echo, my EF was still in the 40-45 range, which is very disappointing to me because I was told major recovery happens in the starting few weeks, and I am worried and stressed as hell. The thought of living with reduced heart capacity for life at such a young age haunts me.
I would like to ask people with a similar situation to mine: is there hope left for a normal EF, what their story of EF recovery was, and if there are any things I can do to maximise this
Any guidance would really be helpful