I would be suspicious of the PH specialist’s alleged statement that “it can’t be PH because the RHC back in 209 couldn’t be wrong.” Perhaps you misunderstood what he/she said but what was found (or not) then is much less important than what is going on now, with the reduced diffusion capacity, the “dry cough” the elevated ECHO PA pressures and your having become “increasingly symptomatic”. It is imperative that the current status of your PA pressure be assessed and, if elevated, the cause of it be determined. Any of the preceding could also be seen with what is called interstitial lung disease, a condition that in the early stages may not be apparent on chest X-ray and not associated with abnormal pulmonary function tests.
Your having had “two strokes of unknown cause” raises yet another question. Might you have what is called a patent foramen ovale (PFO)? A patent foramen ovale (PFO) is a defect in the septum (wall) between the two upper (atrial) chambers of the heart. Specifically, the defect is an incomplete closure of the atrial septum that results in the creation of a flap or a valve-like opening in the atrial septal wall. This described defect would have the potential to contribute to pulmonary hypertension and could allow clots to pass into the left side of your heart and then to your brain, causing strokes.
You might to wish more about this condition at the following website: http://my.clevelandclinic.org/disorders/patent_foramen_ovale_pfo/hic_patent_foramen_ovale_pfo.aspx
I believe that your condition definitely requires further investigation, perhaps by the respirologist who “was sure it was PH.”I suggest that, as a point of departure, you share this message with him. Whatever you decide, do prompt your physicians to take further action.
Good luck
I would be most interested in a follow-up by you regarding what transpires in the near future.
Thank you for your response. I will definitely push this further. I really appreciate your opinion.