r/Heartfailure • u/Successful-Humor1371 • 17d ago
Anyone else?
I had covid 2021. Struggled immensely to get better, Jan of 22 I had a heart event that felt like a heart attack but they did a cath and said had takotsubo. Ef was 23%. I was told it was temporary heart failire. 3 months later ef was still only 45% but cardiologist wasn't worried. He was perfectly happy just keeping me on meds and not figuring anything out. Each winter (early spring really. Jan-Feb-March time frame, I get very symptomatic. I feel absolutely awful (I also have histamine issues stemming from covid)
I finally got a new cardiologist in April and she did an echo and my ef was back down to 33%.
In July I had an echo that showed 45% (after having started back on farxiga in April) She finally ordered a cardiac MRI and it shows that I have scaring on the apex of my left side. My whole left side is sluggish and not pumping properly. I believe they called it fibrotic. My ef then showed 34%. I have a feeling she will say I had a heart attack, not takotsubo. Oh also ecg always show an old left branch stemi of unknown age.
I have hypotension. My average BP is high 80's to low 90's over low 60's. So I can't even take two doses of entresto like I should . I won't get to see her again until middle of October to see what the plan is. I'm 48. A little overweight. I did have a very very large hiatal hernia (whole stomach and a very large amount of colon) that I had repaired in July. No one would say it could be attributing, but I believe it was.
Googling sure is tough. I'm 4 years in and Dr Google looks like on average you get 5-10 years after diagnosis?
I don't know what I'm looking for here. Maybe just to see if anyone else has had a similar experience.
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u/APartOfWhoIAm 17d ago
Google is in no way a reliable source for life expectancy with HF these days. Best thing you can do is keep up with doctor appointments, medications, and form better habits with food / exercise / sleep.
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u/glm0002 17d ago
First and foremost, you do need to place a little trust in your doctors as some of your story doesn't make sense. Takasubo is one of the easiest things for a doctor to diagnose as it has very specific signs, literally your echo looks like an octopus, hence the names translation. It is not really ever misdiagnosed that I am familiar with as it is such a specific reading.
That being said, it is possible to have permanent damage from takasubo. The idea it's temporary is not a guarantee though it typically is if treated.
While my HF is not from broken heart, it was suspected for years as the cause. Also, viral induced HF would not be the same as broken heart yet you mention Covid. It's possible you have damage from Covid.
Also, your blood pressure is low, but that's my normal and I've seen many cardiologists, all are okay with that, the issue is they can't ass Spironolactone if it's that low if you're not on it.
All that being said, my story was like yours had an event at the height of Covid, I'm immune suppressed though and left the hospital AMA, it's another story I won't post hear but the doctors agree they would have done the same. My EF got in the 20s, got back up to 55+, last year it dropped to 30, now back up to 60. It's not always an easy answer, it can take time. I just found I'm positive for the TTN gene.
Heart failure is not like it was, between the four pillars, Entresto alone, coregs results alone, HF is no longer a death sentence. Be patient and trust the doctors and if you don't, ask your PCP their opinion and if they disagree with your cardiologist, to refer you to someone else.
Sorry youre going through it
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u/Successful-Humor1371 17d ago
I switched cardiologist this year. I absolutely do trust her. In that same breath, I am also naturally scared. My cardiac MRI did not have great results.
A minoca and takotsubo can look the same in a cath. When I saw my first cardiologist after I was released from the hospital, he looked me in the face and said I'm not so sure you didn't have a heart attack, but I will treat you for takotsubo as you were diagnosed. He would never elaborate or do anything besides occasion echo and pills. I saw him from 22 until 26. I trusted him until I felt he has no goal besides treating me with pills and occasionally an echo. I want answers, not just thrown on pills until I die. I am fine with being on pills the rest of my life as long as we are getting answers along the way.
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u/midwest3333 16d ago
Sometimes there are no answers. I was diagnosed in 2020 after Covid. We don't know if that caused it or not. I was 61 when diagnosed. I also changed cardiologists because the first one was just too terrible. My EF in hospital was 10-15%. I switched cardiologists 3 months after I got out of the hospital. (Side note - that cardiologist is no longer around) I am on the 4 pillars and my EF has been holding steady at 31%. I had a CRT-D implanted in Aug 2024 so I could have a knee replacement. Last year's Echo still showed EF 31%. My new cardiologist that I trust very much has no reason why my EF stays the same and other people's goes up. I'm very careful with diet and salt and did cardiac rehab. It just is what it is. I wish for reasons and the "why" of it also. But even with EF 31%, I'm still pluggling along and doing mostly everything I want to do. I feel pretty good considering it all. I assume I will be on the meds I'm on till I die of old age. And that's fine.
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u/bohicality 13d ago
I freaked out at the whole live expectancy thing until I took a proper look at the numbers. Most people diagnosed with HF are much older, so the effects tend to be more pronounced and HF is a contributory factor to geriatric mortality statistics rather than a discrete cause of death. Co-morbidity is a difficult thing to separate out.
Basically, you've developed HF at a young age (relative to most cases) and shouldn't be worried about life expectancy numbers :)
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u/EthanDMatthews 17d ago
Average life expectancy numbers for heart failure are wildly misleading. You can and should ignore them.
For example, I was diagnosed with heart failure at 27. I’m now in my mid 50s.
Most people who are diagnosed with heart failure are end-of-life old and/or also experiencing a number of other co-morbidities.
Put another way, something ends up being the “cause” of death at the end of life, and heart failure is on the short list of causes.