Have they been able to determine the cause for you? A treatment plan?
Not yet. Working on it.
Mine's a rather long and convoluted story. In short, three cardiologists and two electrophysiologists said my issue was 'just atrial fibrillation.' But
my interpretation of all the data (labs, event monitors, multiple different kinds of echo's, and a cardiac MRI) said heart failure.
That's how I found my way to Boston for the iCPET test. And Boston's where they told me that mine
is heart failure (HFpEF) and PH (WHO Group II).
Now a heart failure specialist is reviewing the cardiac MRI from last year. If he can't glean anything from the images the next step is an endomyocardial biopsy. I'm pushing for that. It's considered the gold standard in cases like these.
There are so many things that can cause this - I have no idea yet what it will be for me. I'm trying to stay away from Dr. Google - already scared myself sufficiently enough - a little knowledge can be dangerous.
Amen
Have they suggested heart catheterization and/or invasive cardiopulmonary exercise testing for you ?
Theoretically, they're not supposed to formally diagnose pulmonary hypertension without the heart catheterization ... which ... incidentally ... isn't anywhere near as frightening as it sounds.
I would guess the upcoming cardiologist will talk about that with you.
It seems really key to get the most accurate diagnosis (ie, the underlying etiology) possible. One kind of pulmonary hypertension is very treatable. Likewise, some of the numerous causes of LHD (Left Heart Disease) are treatable. Getting to the right specialists seems really critical.
I hope this turns out to be what's been causing all of your symptoms and that whatever they find IS the treatable kind.