OK. I’ll bite. (So to speak!)
Quality of life is one measure. What about delaying disease progression? Or extending life?
I’m most curious about “at-home training.” I’ve been doing pulmonary rehab for a couple of months, now, and it essentially amounts to being an exercise class. Is that what “at-home training” is? Exercises you do at home?
One of the things I wonder about is whether any PH patients are given instruction in HOW to breathe? I know that sounds odd, but…. What I haven’t learned in pulmonary rehab, I learned from my massage therapist. She told me to put my hands lightly on the outside of my rib cage, arms akimbo. In other words, elbows out. Then, she said, try to expand the girth of your rib cage by breathing in. Imagine a wooden barrel made of slats of wood all bound together. Then imagine inhaling so as to make those slats gently expand and thus separate a tiny bit. When you exhale, the slats go back to fit tightly together. Inhale; slats/rib cage out.
This is not breathing into your belly. And it’s not breathing into the top part of your lungs–shallowly. It’s breathing deep down into your lungs, focusing on expansion and contraction of the rib cage while keep the belly immobile.
When I got the hang of doing this, it really helped me feel like I was able to breathe more fully. More, even, than doing “belly breathing.”
Are these kinds of things EVER taught to PH patients? Is that kind of what “at-home training” is meant to be?