About Me (In My Own Words)
Hi Everyone, I am so glad I found this community:
I'll be 60 in October.
When I was 26, I was diagnosed with Lone Atrial Fibrillation. "Lone" because they were not sure of the cause. My brother, my sister, my mother, uncle and aunt, and a first cousin all have/had been diagnosed with A-fib. We were told it was NOT congenital.
About 15 years later I was told that they had seen the 'septal defect' or 'hole in the heart' in an echocardiogram, so thought that was the cause of the Afib.
About 6 years ago, I was diagnosed with:
- severe enlargement of both atria
- bundle branch block
- still peristent/permanent a-fib
in the past year, was diagnosed with Mild-to-Moderate Mitral Regurgitation
my Ejection Fraction is 45 - 50 (2 different readings on the last two echocardiograms).
I was told a few years ago that "you have to let this get worse before we'll do surgery."
Well, now I think I am at "worse."
I have all the symptoms of heart failure (and was diagnosed with 'heart failure' (early stage) about 6 years ago): shortness of breath, persistent cough, pounding heart at rest, sometimes swelling/water retention in ankles, and a 'pain' which feels like it is in the middle of my heart (if that makes any sense). The other thing: I am so, sooooooo exhausted. All the time. I work a full time job (from home) that is stressful, and by 2-3 pm every day I have to lay down. This is affecting my lifestyle. I don't go anywhere. I have only one daughter (30) who I do not want to burden with all of this. I really do not have any other family or friends around me for support. I feel alone and scared. And so depression probably enters into all of this.
Last week I wound up in the ER with that pain in my chest and maybe an anxiety attack? I'm not sure, but all tests came back 'status quo' so maybe it was 'all in my head.' (kidding about that, actually).
I see my cardiologist next week.
But I am really feeling scared. I was told that my cardiologist had come down to the ER.....BUT he never visited me! That I find strange.
I'm thinking he may tell me that things are status quo and I need to wait. If he does tell me that I will insist on another doctor / second opinion about getting a surgery for the valve / regurgitation at least.
I do not want to wait. I want the valve repair so that my quality of life will improve.
I know that things will not get 'better' (heart failure, the afib, etc.) but I CAN slow the progression and I CAN have the valve repaired to stop the regurgitation, which I believe is causing the exacerbated symptoms.
And now i have found this community; thank you for reading this long list of what's going on. It's nice to know that there are other people out there who are going through the same thing.
I feel that I am not being listened to by my doctor (Kaiser), symptoms taken seriously. I don't look sick, I am a very upbeat, positive person, I laugh alot. I meditate. So maybe they think I'm OK 'cause I look and act OK? (which I think is very important to keep myself positive thinking).
So I greatly appreciate anyone who reads this...for 'listening!'
THANK YOU!
Elaine
More Info About Me & My Heart
More About Me
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I was diagnosed with:
Mitral Regurgitation
Atrial Fibrillation
