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Oh, my dear PHriend @debbie, I’m frustrated and angry at your pulmonary doctor. I agree with @cdvol3gmail-com; maybe ask for a referral to a different pulmonary doctor. Is this doctor a PH specialist?
I’m sorry you had such a horrible visit, and you deserve better. Did you ask him why you couldn’t try another PH treatment in that same class of meds, like Revatio? Or, did you try that before, too?
For me, the stuffiness and congestion were side effects, as were headaches. Both of these are often side effects of the PH treatments, unfortunately. However, taking something like an OTC generic Zrytec or Claritin, plain, of course as well as using nasal sprays and Tylenol, is what I was recommended to help with those side effects. Do I remember correctly that you didn’t get any relief from these side effects even after being on it for months?
CPAP may certainly help with fatigue. I know many who had positive results after using CPAP at night. Here is one topic recently that we discussed CPAP. When do you think you’ll be fitted for a CPAP?
Your pulmonologist may know about PH, but not a good fit for you. I hope you can get a referral to a new pulmonary doctor you can trust to do what is best for you and you can question when things are not helping. Do you think this is an option you will look into? I’ll share the Find-a-Doc link from PHA to help you search by zip code.
I’ll say a few extra prayers for you, my dear PHriend. I hate that it seems you are back at square one again! Don’t stop self-advocating! Extra gentle hugs and love are coming your way. <3