but we get different issues, such as diastolic heart failure instead of systolic heart failure.
Some of us also have cardiomyopathy, probably not commonly diagnosed either.
I always like to preface this with "In my
very personal opinion ....."
I don't actually believe that we 'get' cardiomyopathies and diastolic heart failure per se. I believe things like that are what we
have -- what's
really wrong with us (those of us with these Dx's) and what's making us sick.
HFpEF (the newer term for diastolic heart failure) is a bit of a catch-all diagnosis -- like ME/CFS
may be too. It really just describes a symptom/sign. In this case ... heart failure.
The best way to figure out what's at the root of HFpEF (and other cardiomyopathies) tends to be an endomyocardial biopsy (EMB). But they're complicated and certainly have risks. They're also
rarely ordered if a patient isn't
acutely ill.
If you look into 'subacute' or 'chronic' myocarditis, for example ... or basically any inflammatory or infectious cardiopmyopathy ... they present an awful lot like ME/CFS.
[An underlying immune dysfunction or infection can certainly render us more vulnerable to these cardiac things too.]
I'm off to Johns Hopkins in a few short weeks. I'll be seen in their HFpEF clinic where a heart biopsy is routinely ordered. I'm hoping to get my answer from this trip, though I haven't found any answer that could be considered good news.
Meanwhile ... the digging that I've done in the last couple years has me thinking that anybody with significantly elevated NT-pro-BNP may very well have some sort of cardiomyopathy at the ... er .... heart of their illness. It's just a blood test and may be something that many of us could convince our primary care physician (or even a cardiologist, if necessary) to order.
Particularly if any of your symptoms is cardiac (POTS, OI, shortness of breath, arrhythmias, palpitations, exercise intolerance, lightheadedness, dizziness, near-fainting, fainting, etc.). Some of these aren't
specific to cardiac issues but can certainly be associated with the heart.
In my very personal opinion ... elevated NT-pro-BNP (in the PWME world) is likely to eventually be viewed as a biomarker that defines at least a certain subgroup of PWME.