Written by Jana

My name is Jana, I am 26 years old and I come from Slovakia. I had Pulmonary Arterial Hypertension (PAH) and one month ago I received a lung transplantation. I had started last term at university when doctors diagnosed me with PAH. I do not know exactly when my problems breathing started. When I was younger, I did a lot of sports. I was usually in good health, but more illnesses came on at university. The big problems came in small steps before I realized them. I was not able to walk as I used to before. The older people were faster, I always missed the bus, I could not go up to the hills. But I was thinking that it is because I am in bad physical condition. Then came one day in November 2009, when a group of students went on an excursion to walk up the hill. I had problems with breathing and I had to come back. I realized that something is not alright and I started to be really troubled. I went to my local doctor and she told me I should go to internal doctor, where I got the diagnosis in February 2010. In February I went to this doctor and she did an Electrocardiography (ECG or EKG) which showed that something was wrong. Then I had more tests like roentgen, blood analysis and Computer tomography scan (CT). These tests did not show anything clearly. My fear started to be bigger. At the Echocardiography in March 2010, it showed that I might have Pulmonary Hypertension (PH). This was for the first time I heard about this illness. The doctor called to the specialized centre for PH in Bratislava (National Institute of Cardiovascular Diseases) and after four day I went to hospital. I clearly remember this day. My fiancé had birthday and I went to hospital for the first time in my life. I felt really scared and nervous and I was confused. I exactly did not know what the illness will bring me, but I knew that something will change in my life. The doctors made me the standard tests which are specific for be diagnosis of PH (as ECG, roentgen, analysis of blood, CT, Echocardiography, Right-side catheterization of the heart, Complete functional overhaul of the lungs, etc.). The result of these tests was that I have idiopathic PAH, so the reason why I got this illness is unknown. I started therapy. The Complete functional overhaul of the lungs showed that I have very poor lung capacity. So I was sent to Clinic of Pneumology. As a result of test there, I discovered I also had Pulmonary Fibrosis. I started with therapy, but it did not work and I stopped with it after four months and I had only small dose of steroids. You know, with an untypical illness comes many questions. I have had a lot of them like: Why am I the elected? Why happen this to me? What had I done wrong? What should I do better? At the beginning I was totally frustrated and disappointed at my diagnosis, but it did not last so long. I realized I have my sweet fiancé who stays with me all the time, I want to graduate university, and I want to see more in my life… I am too young to die in a short time. So I started to fight my illnesses. During a half a year my life totally changed. I did not finish the university and many things were different, I got a lot of restrictions but I was able to handle with illnesses. I got married in October 2010. For us, the worst restriction was (and still is) that I can not get pregnant. But we decided that we want to adopt a baby when I will feel better. The next year, I was working on my thesis and learning on last exams. Finally I was successful and graduated in June 2011. But my happiness did not last long time. In May I got ill and I could not get healthy more than three months. I got worse. My legs and abdomen started to fill with water and my heart was under pressure. Unfortunately, in September 2011 I got salmonella, so everything was worse. My days looked the same. I slept so long in the morning, than I cooked and the rest of the day I stayed in front of the television. During the nights I could not sleep and my husband had to carry me upstairs. I have no energy to do anything and I came back to my bad moods. Finally, I got on the waiting list for transplantation of lungs in AKH Vienna in September 2011. I was lucky because after one month on the waiting list I got new lungs. Now it is more than one month after transplantation and I am doing quite well. I am totally self-sufficient. It is an amazing feeling twhen you can purely breath, without an oxygen machine. You can walk without problems. I am grateful that I got a new opportunity for normal life. When I look back, this one and half a year was the hardest in my life. I really appreciate my husband, my parents and my friends who helped me. They believed in me and they showed me I am strong to handle everything. I also thank all the doctors in Slovakia and in Vienna. I am glad that I am one of the transplanted people who can say: “I was born for the second time!” And I decided that the date of my operation will be my second birthday. Jana ''Rare Connect''