Diagnosed last November when I had a tumor removed from my knee. Went hypoxic under anaesthetic - big panic with doctors. After numerous tests was diagnosed with PH on Christmas Eve. I think I will celebrate every xmas eve as my gift of extra life. Am on warfarin 12 mg and bosentan. After about 5 months my quality of life had not improved and a reassessment was done and final diagnosis is chronic pulmonary emboli and this is what is causing the ph. Unfortunately not an easy solution to this disease. No surgeons in Australia at the moment are willing to do the operation on me and currently awaiting decision from USA surgeon to do a pulmonary thromboendarterectomy. As with everyone else I have the ups and downs, use my oxygen a lot (not quite as much as doctors would like). I have the huffing and puffing, tiredness but the main bug bear is the light headedness I experience due to the blocked vessels in my lungs. Drives me crazy whenever I stand up or move or walk around for a while. I know this is due to oxygen levels also dropping. Every morning I wake up I thank god I woke up and my husband also says another day. The longer we fight and educate ourselves about our diseases and if you feel that not getting right answers keep pursuing avenues.
We all have ph but everyone of us seems to have a different tale to tell and this site is most useful for support and up to date medical research.
Thanks to Annie and Joan who do a wonderful job.