One unplanned long rare journey full of surprises, which turns you into a wise giraffe

The story of Natalia

My name is Natalia and I’m from Bulgaria. After 14 years journey in Pulmonary hypertension world, I can said that this is an unplanned long journey full of surprises, which turns you into a wise giraffe.

My rare travel started surprisingly and painfully in 2009. I passed through all hardships with which this disease would always surprise you. I often think why one illness found yet in 1891 by the German pathologist Ernst von Romberg remains incurable until now.
Fate is strange and unexplainable. When I was 38 years old, I found myself in a hospital for the first time in my life to learn that I had the incredible luck to have a rare disease, which makes you a princess that cannot move without getting short of breath and whose lips are always blue. My life turned upside down and for about six months I was lost. Then I told myself that I can handle that and that there are also other people like me.
In 2012, with a group of friends, I founded the Bulgarian Society of Patients with Pulmonary Hypertension (BSPPH), of which I am currently chairman.

As a terminally ill patient, I read a lot and hoped to wake up to the news that somewhere in the world some research team had finally discovered the magic pill. I looked forward to seeing what stage the various pharmaceutical companies’ studies had reached. I myself was part of such a study. In my country they say hope dies last. But gradually I realized that the therapy I was receiving was not effective. My body had a terrible color, I did not have the strength to walk 200 m without rest. Usually the nurses in the hospitals asked me if I went to the solarium often. They didn’t think it was one of the main symptoms of PAH.

I used to have seizures and people wondered how a young woman with no visible symptoms could just pass out on the street. For two years I received trepostelin therapy, which was not available in my country. I became a health immigrant in Greece to receive this therapy. I was hoping that the hemodynamics would be detailed,

All that was left for me was to walk the difficult administrative path and find my salvation in Austria. On March 9, 2016, I received the greatest gift a person can receive – a new life. It was given to me by my donor. Now I have a new, better and meaningful life because of him. But I continue to help PH patients who are fighting for their lives.

It was a great challenge but Dr.L. Dimitrov MD who was my physician in charge encouraged med to enter bravely the patients’ movement. I am not sure but probablly he accurately estimated that by training my brain every day, I will not fall into depression, which inevitably overtakes people who have pulmonary hypertension.

From the distance of time, I know that the patients’ organizations are one of the main facilitators for newly diagnosed patients. At present, I am a wise giraffe that looks down and enjoys every moment but never forget the the hardships I went through.

Hugs from Bulgaria,