I went into my RHC with the idea that I might have PH, and my cardiologist confirmed before I left the OR. Not really sure I had a reaction or not, probably relief that we had an answer. I did research, and this site came up on my Facebook feed. I'm so happy it did, I've learned a lot here, and made some friends.

It hit me hard I had no prewarnings . One night woke up gasping for air drove to er an collapsed at the door woke to on stretcher being run done the hall w nurse cutting my clothes off they had no idea what was wrong all I could manage was NEED OXYGEN was in 9 days told had complete respiratory failure diagnosis w copd w hypoxia. Suddenly overnight my life had changed ! I couldn't believe it was in denial they're wrong ! Went thru many tests seen cardiologist sleep labs pulomary testing apparently I use up the oxygen In my blood steam while active yet won't give me oxygen at home to sleep with cause I maintain a 94 o2 level until I get a exbacuation attack then drop into the 80s very quickly . So far I've been put on tregiolgy have Nebulizer If neededcan inhalers . I'm still waiting for pulomary appt in Dec.......

To be honest, I was dumbfounded. "You have PAH" was the last thing I ever expected to hear. My next thought was concern for my husband. We'd cared for my M-I-L the last months of her life. PH took her life. As the news soaked in more, I felt sad and depressed. I was only 62. I'd just qualified for Medicare. I had so many plans and dreams, grandchildren I wanted to watch grow into adulthood. I was angry.

It was friday. While I waited after cath when the vessels will be cured, nurse put thin booklet about PAH for non doctors on the side. Doctor came and explained PAH to me. I was in shock. At that time I wouldn´t understand anything. I begged him to call my mother, who is also a doctor and explain it to her. Then he left. All left. When I could put down sand from my neck, I read the booklet. I quickly understood what it is and got nervous breakdown. I called my mother and cried. Nurse brought me dinner. I cried and cried and cried. Nurses started coming and coming and looking at me like something at the ZOO. I was just informed that I have incurable progressive deadly disease and they didn´t understand what is wrong. The doctor on duty didn´t came to see me, he sent 0,5 mg Neurol and that was all. And I cried and cried. I don´t remember a minute what happened whole weekend. I have only pieces of memory from next two weeks I was in the hospital. My brain was like fried. Totally non-functioning. I have depression and anxiety in my health card and they didn´t even call for psychologist or anything. They didn´t care. None of them. Next week nurse behaved normally, like I just didn´t receive such horrible news. Like I should be happy that I have PAH. She came three times to teach me prepare pump with Veletri. I collapsed three times in the hospital, while they titrated dosage of Veletri. I got into deep, very deep depression for next years. That was in 2018. Meds changed, Veletri caused more damage then good. Anxiety attacks. Depression attacks. I am still in deep depression. They still don´t understand why. In the Czech republic is a Support group for people with PH. I am not a member, they blocked me, because I have depression.