When I was diagnosed with PH, I often thought about the disease. I kept searching the Internet, I listened to various stories about it, asked for anything related to PH. I must admit, all the information effected me a lot. I would constantly find some new scary things that have troubled me. The prognosis for survival with PH was very difficult to accept, but after a while I realized that the disease acts differently on people, and that there are large variations. It is not the same for everyone. Everybody reacts differently to this awful disease and everybody survives it differently – physically and mentally. Lately, I try not to think about pulmonary hypertension, but when I start feeling bad, I can’t help myself thinking about what has happened and what’s happening to me. Sometimes, I just need to forget all that. In those rare moments of forgetfulness, everything is fine.

Can you imagine how it is to resist thinking of such a cruel disease and every symptom, every pain in the chest, the exhaustion when I climb the stairs? All this reminds me of it again. I try not to think, but actually when I think, it effects me negatively and I start to feel bad.

However, I try to keep my thoughts positive and clear. I hope some better time will come. That finally someone will import the drugs for PH from abroad that exist almost everywhere else in the world. That we would be better treated by our health care system, and that they will have understanding for us. That we will, at least at those moments when we are fighting for breath, and it is too often, get an oxygen concentrator that will help us breathe easier. I’ve been waiting for this for almost a year. It seems to me that it is in vain… and I wonder how long I have to wait. Sometimes I think of it all the time, I wake up with this knowledge, sometimes I forget. Those days when I do not think of the PH are the most beautiful days of my life. Then I laugh more often. I get sad when the carefree feeling (and now I’m at the age when I need to be carefree) is interrupted by some other new symptom. Then I return back to those difficult thoughts. They are not negative, but are full of fear for the future. I’m afraid that the situation will never improve, that I’ll never be able to run, to perform normal sports activity again. However, despite all this, I don’t give up. My thoughts remain positive. I do not give up the dream that the day will come when everything will be better.

During the day, I think certainly 3 to 4 times about PH, but it all depends on many factors. Every day is different. It happens that some days pass and I even don’t think of pulmonary hypertension, and the next day I think too much about it. Sometimes, as I said, I want to forget it all, to wake up from that nightmare, to realize that it was all a bad dream, but unfortunately, this is my reality. I do not give up the hope and the faith that everything will get better.