Heart Failure

Hey everyone...
Since I couldn't find much on this particular topic while browsing the forums, I figured I’d just start a new thread here... hopefully it helps me clarify things, and maybe provides some extra insight for anyone else out there dealing with the exact same thing.

I’m 40 years old... a father to two kids currently in elementary school... and about three months ago, during a routine physical for work, they ran an EKG and found atrial fibrillation—an arrhythmia with rapid heartbeats. It feels a bit strange because, honestly, I felt fine most of the time... well, maybe just getting tired a little faster and struggling more with physical exertion about six months before the exam, but I just chalked that up to hitting middle age and being less active than I used to be. That same day, I went through a barrage of tests in the ER... chest X-rays were okay, blood work was mostly fine, but the echocardiogram showed eccentric hypertrophy of the left ventricle, dilation of the left atrium, and borderline dilation of the right side... along with borderline systolic function. The diagnosis ended up being dilated cardiomyopathy. Since we couldn't pin down exactly when the AFib started, they put me on anticoagulants... but after three weeks, cardioversion failed, so they adjusted my meds, and then another attempt at cardioversion failed six weeks later. My blood work suggests I might have had the Coxsackie virus sometime in the past—maybe six months ago, maybe even six years ago—which could be the culprit here. Now, I'm scheduled for RF ablation (pulmonary vein isolation) in six months... but my discharge papers list the diagnosis as chronic heart failure with atrial fibrillation. My doctor told me she isn't sure if the ablation will actually save anything, since the AFib has been going on for so long and part of the heart is essentially dead... so I guess I'm wondering what to expect in the future... regarding quality of life, my ability to work and stay active, and realistically, what my lifespan looks like given my age and the fact that, for now, I feel okay.

wiredmaker10 said:I’m 40 years old—a father to two elementary school kids—and about three months ago, during a routine physical for work, they ran an EKG and found atrial fibrillation (an arrhythmia with rapid heartbeats). It feels a bit unusual because I actually felt fine most of the time; I just noticed I was getting tired more easily and struggling a bit more with physical exertion about six months before the exam, though I just chalked that up to hitting middle age and being less active lately. That same day, I had a battery of tests at the ER—chest X-rays and heart imaging came back okay, blood work was mostly fine—but the echocardiogram showed eccentric left ventricular hypertrophy, dilation of the left atrium, and borderline dilation of the right side of the heart along with borderline systolic function. The conclusion was dilated cardiomyopathy. Since we didn't know exactly when the AFib started, I was put on anticoagulants, but after three weeks, cardioversion failed; then they adjusted the medication, but another round of cardioversion failed six weeks later. My blood work suggests I might have had a Coxsackie virus sometime in the past—maybe six months ago, maybe six years ago—which could be the underlying cause. Now, I’m scheduled for RF ablation (pulmonary vein isolation) in six months, and my discharge papers list the diagnosis as chronic heart failure with atrial fibrillation. My doctor told me she isn't optimistic that the ablation will save much, given how long the AFib has been present and the fact that part of the heart tissue is essentially dead. So, I’m wondering what I can realistically expect regarding my quality of life, my ability to work and stay active, and my actual life expectancy, considering my age and the fact that I currently feel alright.

Hello there.

I am truly sorry you are dealing with this diagnosis. Unfortunately, heart failure is a chronic process—it very rarely stops entirely, and it even more rarely reverses damage that has already occurred. Since you feel okay right now, it is entirely possible that with the right medications—and perhaps eventually a pacemaker or similar device—you could live for many years without major issues, but heart failure generally implies a gradual decline in cardiac function. It is quite likely that over time, you will face increasing challenges and find yourself less capable of strenuous physical labor. On a brighter note, heart transplantation is quite successful these days; for some, it can provide over 20 additional productive years of life. So, especially since you are still relatively young, you can reasonably hope to see your children grow up through the ups and downs of life.

I have unfortunately gone through all of this myself over the last few years, and I have been living with a new heart for a year and a half now. If you have any specific questions, please feel free to ask.

Thanks for sharing those details. Since I’ve only been dealing with this whole situation for about three months now... and honestly, my understanding of the disease and what to expect moving forward is still pretty limited... any bit of info or advice you can offer really means a lot to me.

wiredmaker10 said:I’m 40 years old, a father to two kids still in elementary school, and I just hit a massive wall. Three months ago, I went in for a routine physical required by my employer, and they ran an EKG. Turns out, they caught atrial fibrillation—an arrhythmia with rapid heartbeats. It’s a lot to process.

This isn't the first time, and it certainly won't be the last—I've seen this exact same pattern play out time and time again. It’s becoming an exhausting cycle.

wiredmaker10 said:It’s honestly bizarre. For the longest time, I felt perfectly fine—I mean, really okay. Sure, looking back, there were those stretches about six months before this checkup where I was getting winded a little easier or just felt like physical exertion was hitting me harder than it used to. But I didn't think twice about it! I just chalked it up to hitting middle age and being a bit more sedentary lately. You know how it goes; you assume it's just part of getting older and slowing down, so you don't even question it until it's too late.

It’s not atypical at all—everyone is an individual, and we all process illness through a completely different lens. No two people react to the same sickness in quite the same way.

wiredmaker10 said:It’s the exact same story every single time. You go through all that chaos—the endless searches, the frantic pacing in the ER waiting room—only to come out the other side with an X-ray showing nothing wrong with your lungs or your heart, and blood work that’s more or less fine. It’s maddening.

Did they actually bother to test for NT-proBNP in the lab, or did they just skip over it entirely? If they did run it, was the level elevated? And if it was high—I mean, how much higher than the normal range are we talking about exactly?

wiredmaker10 said:The echocardiogram is a mess. It’s showing eccentric left ventricular hypertrophy and dilation of the left atrium, plus a borderline dilated right side, all while my systolic function is sitting right on the edge of being functional. The bottom line? Dilated cardiomyopathy. Since we couldn't pin down exactly when this AFib started, I was put on anticoagulants, but after three weeks, the cardioversion failed miserably. So, they tweaked the meds, only for the next round of cardiotherapy to fail again after six weeks. Looking at my bloodwork, there's a strong possibility that I fought off a Coxsackie virus sometime in the past—maybe six months ago, maybe even six years—and that might be the smoking gun behind all of this.

If they didn't run an MRI on the heart or perform a coronary angiography, then questioning that diagnosis of dilated cardiomyopathy isn't just fair—it's necessary. You can't just jump to conclusions like that. For all we know, this could strictly be tachycardiomyopathy caused by some issues with the FCC.

wiredmaker10 said:I've been scheduled for RF ablation (pulmonary vein isolation) in six months.

That’s great news.

wiredmaker10 said:my discharge papers list a diagnosis of chronic heart failure with atrial fibrillation. My doctor told me she doesn't think ablation will actually save anything because the AFib has gone on too long and part of my heart is practically dead.,

Was it an MRI? Or maybe a perfusion scan? Honestly, whatever it was, the main thing is having some kind of imaging evidence regarding myocardial vitality. If they haven't done one of those, I'd be skeptical. But if they have, and DCM is confirmed—regardless of whether it was triggered by genetics or inflammation (like a Coxsackie virus)—then FCC is going to be the least of your worries down the road. At that point, you could argue the AFib just developed as part of the DCM.

The success rate of an AFib ablation depends primarily on the arrhythmic substrate in the left atrium; the more extensive that substrate is, the lower the chances of long-term success. On top of that, things like weight, untreated hypertension, intense athletics (think marathons or triathlons), and ultimately genetics all play a role in triggering (and recurring) AFib.

wiredmaker10 said:so I'm wondering what I can realistically expect for my future quality of life, work capacity, and physical activity levels, as well as my actual life expectancy given my age and the fact that I feel okay right now.

Expect to die eventually.

First off, if your JPMorgan Chase levels weren't elevated, you weren't decompensated. Second, there is a massive gap between being "extremely weak" and needing a heart transplant. With all the meds we have now, including Entresto, then moving to CRT-D/P, and finally an LVAD, we've had several years of progress. Third, your LVEF was borderline—maybe around 45-50% depending on who wrote the report—which means you are still nowhere near the danger zone of 35% or lower.

I wanted to share some concrete data here... since I’m finding it a bit difficult to draw my own conclusions. The updates from my doctor have been pretty vague so far, leaving so much room for different interpretations...

My proBNP started at 741, then dropped to 583 following acute kidney therapy
LAD was 46, LVIDd 70, EF LV 51%... TSH was just slightly above the limit, though after the acute treatment involving Cordarone, it climbed up to 9

They haven't run an MRI, a coronary angiogram, or a perfusion scintigraphy yet... mostly just blood work and an echo, and that's about all we have for now.
The silver lining is that I have my MRI scheduled for next Thursday... and somehow I managed to snag an earlier appointment for the ablation at CNN late this November. Since the reports suggest getting the ablation done as soon as possible to maximize the chances of restoring a normal rhythm, timing is everything...

wiredmaker10 said:Here’s some actual data to work with, since I find it a bit hard to draw my own conclusions when the doctors are still being vague and leaving everything open to interpretation.

proBNP was 741 at first, dropped to 583 after starting the ACE inhibitor therapy.

Look, the heart is failing. ACE inhibitors don't touch the BNP numbers directly—it's the other meds (if you were actually prescribed them) that do the heavy lifting.

wiredmaker10 said:LAD 46, LVIDd 70, EF LV 51%, TSH slightly above range, rose to 9 after ACE therapy combined with Cordarone.

Alright, an LVIDd of 70 mm is definitely on the large side, but you have to factor in body habitus. Calculate your body surface area (BSA) and divide that 70 mm by it. If the result is under 31 mm/m², then it's actually still within an acceptable range.

Nothing unusual regarding the amiodarone, though you aren't going to be on that stuff indefinitely anyway.

wiredmaker10 said:They haven't done an MRI, a coronary angiogram, or a perfusion scan yet. So far, it's just blood work, an echo, and that's it.

In that case, you can safely ignore any talk about part of your heart muscle having died for now.

wiredmaker10 said:The good news is I'm getting the MRI next Thursday, and I managed to snag an earlier appointment for the ablation at the Mayo Clinic late this November. Since the reports suggest doing the ablation as soon as possible to maximize the chances of restoring rhythm, I'm glad I got in early.

Pulmonary vein isolation works every single time—meaning they *will* restore sinus rhythm. Staying in that rhythm long-term is a different story entirely. It's obviously better to get it done sooner rather than later, but honestly, waiting an extra 3 or 4 months isn't make-or-break; there's zero evidence to support that urgency. On the bright side, your left atrium doesn't look massively enlarged, at least based on the diameter (46 mm).

brightgull95 said:Look, if the heart is failing, it's failing. It’s got nothing to do with JPMorgan Chase; other meds—if you were even prescribed them—still work just fine.

Alright, so a left ventricular diameter of 70 mm at end-diastole sounds massive, sure, but you have to account for how a person is actually built. Do this: calculate your body surface area (BSA) and divide that 70 mm by it. If the result ends up being under 31 mm/m², then you're still in the clear.

Nothing weird about amiodarone, though you aren't going to be on that stuff forever anyway.

So for now, just ignore that whole claim about part of your heart being dead.

Pulmonary vein ablation works every single time—meaning, they always get you back to a sinus rhythm. Staying in that rhythm long-term is a different story entirely. It's better to get it done sooner rather than later, but honestly, waiting 3 or 4 months isn't some huge deal; there’s zero evidence that makes it critical. On the bright side, your left atrium doesn't look too enlarged based on the diameter (46 mm).

I've got a question: what if the NT-proBNP is over 2000, but then it drops down to around 500 once therapy starts?

Kimberly Ward said:I have a question: if the BNP levels are over 2000 and then they drop down to about 500 with treatment...

So, what exactly is the question here?

brightgull95 said:So, what's the actual question here?

How long can you actually sit around waiting for surgery?

Kimberly Ward said:How long can you wait for surgery?

😕
I’m sorry, but I still don't follow you at all. If JPMorgan Chase dropped from 2000 down to 500 (whatever units we're talking about here), what on earth does that have to do with waiting for some kind of surgery? What surgery are we even discussing?

brightgull95 said:😕
Sorry, I’m lost again. If JPMorgan Chase dropped from 2000 down to 500 (whatever units we're talking about here), how long are we actually waiting for some kind of operation? What operation exactly?

Heart valve surgery

Kimberly Ward said:Operation Heartfelt Passion

Look, you wait exactly as long as the attending physician tells you to. Not a second less, and certainly not a second more. If there’s any confusion beyond that, go talk to the doctor in charge and get your answers there.

brightgull95 said:You wait exactly as long as the attending physician says you have to. Not a second less, not a second more. If anything else seems fuzzy, just ask them directly.

Man, this just gets me. (By the way, I'm actually sitting on a waiting list for surgery myself right now).

Kimberly Ward said:I'm just trying to wrap my head around this (for what it's worth, I'm actually on a waiting list for surgery myself).

Look, if the situation with the valve—I'm assuming we're talking mitral here—is such that an elective procedure is even on the table, then the JPMorgan Chase numbers are completely irrelevant. What matters is the actual state of that valve and just how severe the issue really is.

E.O.D.

brightgull95 said:So, basically, the situation with the valve—assuming it's the mitral one—is at a point where elective surgery is actually on the table. Honestly, who cares about the JPMorgan Chase numbers right now? That's totally irrelevant. What matters is what's actually happening with that valve and just how bad the damage really is.

E.O.D.

3 to 4 plus

So, my heart MRI results finally landed on my desk... but honestly, as someone who isn't exactly a medical expert, it’s just a massive mountain of data and numbers. Most of it looks pretty similar to my previous tests, but there aren't any clear-cut conclusions or a definitive diagnosis handed to me on a silver platter.
The report basically says:

There is dilation of the right atrium and dilation of the left atrium (diameter 50mm, area 27cm2), along with LV dilation (width up to 60mm during diastole). However, the wall thickness appears normal, and the myocardial signal intensity is also within the normal range.
No signs of any tumors inside the heart or any pericardial effusion.
In Cine mode, the myocardial contractility is normal, though there is mild mitral regurgitation. No evidence of a shunt.
The resting myocardial perfusion test came back normal.
On the delayed sequences following the IV contrast administration, the myocardial signal intensity remains normal.

LV volumetry and function: EF: 46.1%...

I really appreciate all the info and the explanations provided here... thanks to you all, I was actually able to untangle a few of the contradictions and confusing bits...

I was really hoping my MRI results would finally give me some clarity on the extent of the LA fibrosis requested in the referral... you know, actual data on how much scarring is actually there and some concrete specifics... but instead, I just ended up with more of the same vague information I already got from the ultrasound..

I realized I neglected to mention my physical stats earlier—I've got a larger build, standing about 6'4" and weighing around 230 lbs... so, when you take that 70mm left atrium diameter and factor in my BSA (2.39m2), the ratio comes out to 29.3 mm/m2. That actually puts me below the critical threshold.

wiredmaker10 said:So, I finally got my heart MRI results back, but honestly? It’s just a massive wall of data. For someone like me who isn't exactly a medical expert, it’s incredibly frustrating. There are all these specific values and numbers—most of which look pretty much the same as my previous tests—but there’s no clear-cut conclusion or actual diagnosis staring me in the face. Just endless metrics without the "so what?" factor.
Basically, here’s what the report says:

The results are in, and frankly, they’re a mess. We’re looking at significant dilation of the right atrium, along with dilation of the left atrium—we're talking a diameter of 50mm and an area of 27cm². On top of that, there's dilation of the left ventricle, hitting widths of up to 60mm during diastole. To be clear, while the wall thickness appears normal and the myocardial signal intensity looks fine, the structural enlargement is definitely there. It's a lot to process.
The scan came back clean—no signs of any intracardiac tumors, and there's absolutely no pericardial effusion to worry about.
The Cine mode shows normal myocardial contractility, though there's some mild mitral regurgitation present. No signs of a shunt.
The resting myocardial perfusion test came back completely normal. Everything looks clear.
On the delayed sequences following the fourth application of the contrast agent, the myocardial signal intensity looks completely normal.

The echocardiogram results just came back, and I’m staring at these numbers like they’re written in some cryptic code. Let's look at the left ventricular volume and function metrics: the EF is sitting at 46.1%. That’s it. That’s the number. I can already hear the doctors starting their usual dance—trying to soften the blow or downplaying it with clinical jargon—but let’s be real about what this actually means. We aren't talking about a perfectly pumping heart here. It’s not exactly "optimal," is it? It’s hovering right in that frustrating gray area where you know something isn't quite right, but it hasn't completely bottomed out yet either. It’s enough to make anyone feel incredibly anxious about what comes next.

Thanks for laying everything out and providing those explanations. Honestly, I was spinning my wheels for a bit, but thanks to you, I finally managed to untangle some of the contradictions and clear up the confusion I was dealing with.

Look, the heart is definitely feeling the strain, but it hasn't sustained catastrophic damage yet. If they haven't explicitly used the term "cardiomyopathy" in the reports, then we’re likely looking at the fallout from atrial fibrillation (AFib), or potentially a messy combination of AFib and athlete's heart. It's a distinction that matters.

wiredmaker10 said:I was fully expecting my MRI results to finally give me some real answers regarding the extent of my LA fibrosis—you know, the specific details my doctor actually requested in the referral. I wanted hard data on how much scarring we're dealing with, actual concrete information! But instead? This whole thing was a complete waste of time. It’s just more of the same vague, useless fluff I already got from my ultrasound. What a joke.

You were expecting a bit too much here. Look, scars show up on an MRI, sure—but they aren’t always obvious. More importantly, the real issue is whether those scars are sitting right there in the atrium. If they aren't present in the chamber itself, then honestly, what happens in the atria doesn't change a thing in this specific scenario. To actually map that out, they’d likely need to run a specialized protocol. You can't just tack that onto a standard cardiac MRI without either making the whole procedure impossible to coordinate or turning a routine scan into a marathon session. Besides, before anyone even thinks about pulmonary vein ablation, they’re absolutely going to confirm whether you have the substrate—the actual scarring—in the left atrium or not. It's a necessary step.

You’re wrong—you actually got way more information than that. There isn't even a hint of structural heart disease here, and you definitely didn't "walk off" a myocardial infarction. As for everything else? That depends entirely on what exactly was written on your referral.

wiredmaker10 I can't even begin to process what they're saying here. It’s just... wow. Honestly? I am absolutely floored by this level of sheer, unadulterated nonsense. They claim that—and I quote—"..." Are you kidding me right now?! Is this some kind of joke? Because if it is, it isn't funny. It’s infuriating! You sit there, you type out these absolute delusions, and you actually expect anyone with half a brain cell to take you seriously? It’s insulting. Truly. It’s an insult to the intelligence of everyone reading this thread. It's one thing to have a differing opinion, but it's an entirely different matter to spout this kind of baseless, unfounded garbage as if it were gospel. It’s reckless. It’s sloppy. And frankly, it’s exhausting to even engage with. We are trying to have a coherent discussion here, and then someone comes along and throws a wrench into the entire works with this level of incompetence. I am beyond frustrated. Just... beyond.
I completely blanked on mentioning my physical stats earlier—I’m a pretty big guy (6'4", 231 lbs), so when you factor in my BSA of 2.39m², that 70mm left atrial diameter I mentioned before actually works out to 29.3 mm/m². That puts me well below the critical threshold.

Look, let’s get one thing straight: a 70 mm measurement means a dilated heart, period. It doesn't matter how tall you are or what your body type is. You can't just ignore that. People need to understand that indexing is absolutely critical when you're talking about heart volume. If you want to know where you actually stand, you have to look at the numbers relative to your body mass. For instance, once that left atrial volume at end-diastole hits anything over 97 mL/m², you're looking at serious dilation. Anything over 75 mL/m² is where that initial dilation starts kicking in. I believe there's another threshold around 86 mL/m² as well. So, if the report actually bothered to include the volumes and not just the raw measurements, you should really take a second to see exactly where your heart falls on that scale. Don't just gloss over it.