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Well, speaking for myself, I do an awful lot of my own research so I can not only ask better questions of my doctors but I can better understand the answers I am given. But the "unknown" is part of the human adventure...I don't mean to sound glib, but that's just part of Life. Every day, all day long, we all deal with the 'unknown".
I'm sure there are people on this board whose faith is strong enough that they will tell you it's their faith that gets them through the "unknown".
@A myPHteam Member when we breathe in, we bring in oxygen. When we exhale, we breathe out carbon dioxide. PH causes the small blood vessels where gas exchange occurs to not function properly. To complicate things, I have asthma which causes the airways in my lungs to narrow.
@A myPHteam Member my pulse ox readings are always good during the day, but I still experience SOB. My pulmonary function tests show that I tend to trap carbon dioxide. My pulmonologist told me this is not uncommon. Pursed lip breathing helps to a certain extent.
You asked how Heather deals with the unknown. It's easy to focus on the predicted prognosis of PH. The reality is that many people are able to live with PH for a long time. Many of us lean into our religious beliefs and faith for strength and peace.
During the day my pulse ox is generally normal but my SOB is awful all the time…especially if I bend down or walk the length of my driveway, etc.
Lungs trap carbon dioxide
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