Andjela (Serbia) tells her PAH story

I often think about how my parents must feel. How they must deal with the fact that I have serious health problems. I was not able to accept my illness when I was first diagnosed. It was exactly two years ago and I was only seventeen years old when it all went wrong. The pressure in the lungs was not very high then – it was only about 40 mmHg. However, I started to notice the first symptoms. It started bothering me as I could not climb up to the third floor without loosing my breath. I often had to stop and it was very difficult to walk uphill. It was very difficult in the beginning. I could not accept that I had to live with pulmonary hypertension. I was running away from this problem and I thought that if I denied it, then everything would disappear.

I often pushed myself too hard. I went out with friends and I followed their rhythm of life. Even together with my family, I tried to ignore my tiredness. I didn’t want them to see that I didn’t feel well. I simply ran away from the fact that I was feeling bad.  Later I realized that this was very bad for me. I was fearful and concealed my illness from everyone, and it was simply harmful to my health. After a year, I started to accept my health condition. Even though my problems didn’t disappear, I started living more openly with regard to my disease. I realized that when you don’t worry what others will think, you become much happier, no matter how serious your situation is.

However, at that time, my pressure significantly increased. It went from 40 mmHg to 90 mmHg. I’ve learned to deal with it, but at that time I didn’t accept that this was a really bad sign. I have accepted it now, but at that time I sincerely thought that I was stronger than this serious disease.
I remember that once I had an appointment with a doctor. I stopped the first taxi I could find because I could not walk up the hill. It was only two hundred meters to the doctor’s office. I asked the taxi driver to take me there. I saw his astonishment, he was confused. He asked why he should take me there when it is so close, literally a few hundred steps. It was hard to explain. Often there are similar situations when I have to justify my excuses or when sometimes I don’t have any energy left. People put too much focus on my external appearance and they cannot understand or accept that I am seriously ill. I remember that at that moment I was not able to explain, I once again asked him to take me there. I felt very helpless, and at the time the situation seemed a little absurd.
When I give it closer thought, the only thing that matters to me is that my family and my friends understand me.

Andjela

Andjela from Serbia talks about her PH experience. Feel free to share and create awareness for PH. #TimeMatters

Posted by Pulmonary Hypertension Association Europe on Monday, January 9, 2017

After many sleepless nights, where I always wondered again and again why me, I realized that I will never find the answer to this question and that I look for it in vain. I strive for not stopping  in fear and asking myself if I  can make one more step and not feel the pain in my chest. I hope that my family will never again suffer because of me, like they have from the moment I was diagnosed with the disease. I hope that I’ll never be late for appointments, or let my life be affected by pulmonary hypertension. I firmly believe that one day I will again have the opportunity to exercise and do everything that any normal person can! For the moments of normal life it is worth fighting for, because I want to feel them again.

Now I have no problem telling people that I am just tired when I walk a lot and that sometimes I have to stop and take a rest, that I don’t have the stamina that they do. I never give them a complete explanation, because I believe that they can’t fully understand this complicated situation. So I just always say that I get very tired and that I don’t tolerate any physical activity. That is how I finish the whole story.

I only know that it is sometimes upsetting, because when anyone looks at me they can’t see that I have any problem. I look like any other normal person.
I always hear comments like: she pretends, maybe she’s even spoiled because she can’t  walk from the station to the school? Why do we always have to wait for her …
In the beginning it was really difficult. It seemed to me that I would try everything just so that no one would notice that I was different from them. I appreciated seeing a red traffic lights, because it meant that all of them had to stop. It was a relief to me to get some rest. I often stopped and stared at my mobile phone. I tried to look like I had gotten some important message or a call that I couldn’t hear well. I did anything so that they wouldn’t notice that I couldn’t follow their rhythm. I repeat, now I see how wrong this was. In addition to being breathless, I was very afraid of chest pains that warned me that I pushed myself too hard. It seemed to me, at the time, that I didn’t know whether the pain was real or that my fear caused it when I walked a few steps.

Over time I realized that I have to live with it. I have to learn to fight, and I believe that I feel just a little bit better because I finally accepted my disease: pulmonary hypertension.
Sometimes I’m afraid because there are no medicines for PH in the country where I live. My family and I have no more funds to buy the incredibly expensive drugs. I hope that I will find a way to get the medicine, because even though I’m so young, I know that I have the same right to treatment as all other people … I know that I have a right to life and, therefore, I will never give up. I have pulmonary hypertension, but pulmonary hypertension doesn’t have me.

Last updated: January 25, 2017