Anyone that has this disease will never get the proper care outside of a pulmonary hypertension specialist. Most cardiologist and pulmonologist know nothing about this disease much less how to treat someone who has it.
It wasn´t diagnosed until I almost died. No one of my doctors helped. I visited cardiologist, pulmonologist, alergologist, practical doctor, vessels specialist, ER. No one cared to find out cause why I can´t breathe. Cardiologist did ECHO last July and didn´t find anything. When I vomited 3x times per day because I suffocated so much, that I cough so much, that caused my vomiting, when my legs got so swollen, that I couldn´t walk, I myself went to hospital, where all doctors behaved like I am pretending my health problems.
After three hours at hospital, another cardiologist did echo and suddenly there was very severe PH. Before it, they forced me to walk around with my packages I had prepared for hospitalization and after echo, I was put on wheelchair, because "you can´t walk around here in such horrible state."
I suffered literally for months like an animal, vomited, had diarrhea, lost consciousness, couldn´t eat, was nauseous 24/7 etc. and only because doctors couldn´t bother to find out, what was wrong with me.
I have depression and anxiety for years, so they used it as explanation and said, that I should only find psychologist and go to psychotherapy and it will help me to breathe again.
I was able to walk only 3 steps (not meters!) and they didn´t care.
And after diagnosis in april this year I had nervous breakdown and developed PTSD and no one cares and specialized nurse and PH specialist behave like PAH is nothing so serious and are very surprised, that being on 2 bottles of Veletri and Volibris still don´t help. PAH specialist told me in april, that I am in the worst phase of PAH and that without medications I would be dead in few months. So now I would be already dead.
My PAH didn´t show on spirometry, didn´t show on EKG, didn´t show on blood tests. And my pulmonologist just kept repeating, that I should find psychologist or go to some exercise to "learn to breathe correctly". Because apparently, at age of 35 I forgot, how to breathe (sarcasm).
2013 and I have sarcoid and ph and COPD and on 6 liters at rest and 15with activity