The disease took a lot from me, yet, it also gave me a lot
My name is Tadeja. I come from Slovenia, the country where we have great medical experts on pulmonary hypertension as well as all the necessary medicines. Nevertheless, the establishment of our Association in 2011 was more than necessary. In those days, very often pulmonary hypertension was detected too late according to its rapid progression. It was only urgent to start raising both lay and professional public awareness of disease symptoms. Today we can see significant progress in this area. Probably also thanks to our joint work in the Association.
To be a part of the story written by the European Association of Patients with Pulmonary Hypertension makes me proud and extremely grateful. I am surrounded by wonderful people who, on behalf of all patients, in spite of the disease and hard life, fight for better disease recognition, availability of medicines as well as for professional and appropriate treatment.
In 2009 my life turned upside down
I found out about pulmonary arterial hypertension at the age of 31, in the eighth month of pregnancy, when my highest priorities were preparations to become a mom. I was happy, looking forward to meeting our daughter, making plans how we were going to spend our time together… Luckily, my daughter was born and we both were ok. However, I couldn’t spend as much time being, walking and playing with her as I would have wanted to, because I was not in the good shape in I have spent a lot of time in hospitals, which was very stressful for the whole family.
I couldn’t face the fact that I was sick
At last, after numerous medical examinations throughout the whole year a diagnosis was made: restrictive cardiomyopathy with associated pulmonary hypertension. Soon I was told that my only chance to survive was heart transplantation. Living a life with the thought that I was incurably sick and that my daughter might be left without her mother, was anything but easy.
With the support of my family I gathered all my strength and tried to live a normal life as much as possible. I went to work, enjoyed each single day, in spite of occasional crises. Consciously I was pushing away the thought of being sick. I simply didn’t want to accept the truth. I insisted and pretended to be able to do everything I used to do before the disease. Yet, only for a short period of time. Eventually, I had to admit I was sick.
Joining the Association brought me hope, new knowledge and true friends
The key moment to join the Slovenian PH Association was meeting Klara, co-founder of the Slovenian Association, who sadly is no longer with us. Her positive attitude and amazing energy encouraged me to join them in 2014 and help fulfill their mission which was to raise public awareness of timely identification of the disease. I must admit the decision changed my life to a great extent. I met wonderful people and made true friends.
Time for a new life. Time for a new heart
The year 2018 was very hard. Despite medicines my heart was so weakened that I was placed on the heart transplant emergency list. Luckily, both transplantation and rehabilitation were successful.
In 2020, two and a half years later, I am feeling extremely well and can only be too grateful for a new opportunity and all the support I was given, also by my friends from the PHA Europe. And I am still happy to be an active member of the European Association of Patients with Pulmonary Hypertension so as to be able to stand for equal treatment and access to medicines for all patients, regardless of which country they come from.
No matter what situation you are in – never give up. N e v e r !
So many times I was on the point of giving up, not knowing whether I could cope with anything. Never would I have thought that some day I was going to write this story. Therefore, I am telling you all to never give up. No matter how hard it is.