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How Many Of You Are On Remodulin Intravenously? Also, Are All Of You Seeing A Pulmonologist That Is An Expert In PAH?
I ask as regular pulmonologists are not up to speed with PAH. I also noticed some of you have CREST syndrome like me. Regular pulmonologists looked at me like I was speaking a foreign language when I told them I had CREST. One, after doing some testing, sat back in her chair and said she had no idea what was wrong with me. Luckily, I found that VCU (Virginia Commonwealth University/Medical College of Virginia) had a director of pulmonology and he knew immediately what was wrong. After the⦠read more
I was on Remodulin subcutaneouslly, but had it removed because I couldn't take the site change pain. It was really painful every 5/6 weeks. How are you doing on the subcu?
Isn't it sad that pulmonologists keep patients with PH when they have no experience or knowledge about the disease. I was referred to a clinic where NOT ONE of the pulm. knew anything about it, and their most experienced commented during two phone visits that I didn't have PAH because I didn't fit the profile. "Why did I keep saying I had PAH?" Both times I had to remind him of the data from my Cardiac Cath on my chart showing pressure of 58 in my pulmonary artery. "Oh, well that's PH." I got a referral to the Pulm clinic at UCDavis where they know how to treat it.
I am on Remodulin subcutaneously. Also, I am seeing a Pulmonologist that specializes in PAH.π
How Many Of You Are On Remodulin Intravenously? Also, Are All Of You Seeing A Pulmonologist That Is An Expert In PAH?
How Many People Are Seeing A PAH Specialist And Not A Pulmonologist?
My Pulmomologist Said I Have PH And Has Not Given Me Anything To Help With Symptoms.
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