Club Young Heart


"Young Heart" was established in 2001 under the auspices of the Child’s Heart Association. “Young heart” is aimed to protect young people and adults with congenital heart disorders. Many of these people feel uncertain for their future and are still dependant on their families. The new founded club hopes to do something for these young people – to help their adaptation and integration in society and to assist their personal and professional realization.


From 13 to 17 August in Pomorie was held the First National Conference for Young People with congenital heart disorders under the motto “ Today and tomorrow”. Cardiologists, psychologists and lawyers were invited to present lectures on the psycho-social problems of the young people, their health problems and their rights. Every lecture was followed by a discussion on the respective issue and every participant could share his daily problems, how he feels in society as a person with a heart disease, what are his difficulties today and what he expects from the future.

We present extracts from the stories of three young people from the First National Conference for adults with CHD:

DO WE HAVE RIGHTS?
D.P., economist:
“I have a rare congenital heart disease. I have very serious valvular defects, which make my treatment almost impossible. For the moment doctors can’t do anything for my condition because of the extremely high percent of risk for my health after an operation. In spite of this I decided to continue my education and I applied for the Economic University of Sofia. I was told that as a person with CHD I have a right to apply for a speciality at the University without an entrance examination. After I graduated I began working. Some years passed and I was dismissed since my employers wanted reduction of the staff. I had documents which guaranteed me against dismissal in similar situations, so I contacted a lawyer – he defended my rights and I was reinstated in my former office. My work was very responsible and stressful, it demanded concentration and extra work during weekends. The tension was detrimental to my health and I was ill very often. They proposed me to go to the Territorial Medical Commission of experts and I went there not knowing what was following. The Commission declared that I’ve lost 97% of my working capacity. In the decision it was written “has no right to work”! Now I can’t find job anywhere…”

HOW WE ACCEPT OUR DESTINY?
J.N., engineer:
“I can never forget the story of my mother about my beginning. “ It is 1963. You are a delicate and weak baby – almost dead, coming into the world with a congenital defect. Are you going to survive, my little baby?…” In 1976 we went to Moscow in Russia, where the Russian doctors had to decide whether I will live. This is the most extreme and wonderful period of my life, when I had to pull myself together and to accept my destiny. Then I understood how important is my faith and how strong a man can be…. Many years passed since then, now my children are already grown up. I had the chance to survive, to have children and family. My heart defect influenced my life and the process of growing up and self-perfection. When your destiny is to survive a pain you must survive it. Thus you become a wise person…Till the end of my life I’ll have two scars – the one of them – on my body and the other one – in my soul. This would remind me of all I had to go through.”

DO WE HAVE FEARS?
K.T., student:
“I was 9, old enough to remember…and I would never forget the shock when I woke up in the ER and they told me my heart was operated. I wasn’t prepared for the news, I even didn’t know that I had a heart disorder which demands a cardiac operation. Thus, lying at rest, I grew up immediately. After my recovery I had a normal and happy childhood. Thanks to my parents’ attitude, I grew up as a healthy and energetic child. Only the red scar reminded me of the operation. Many years passed and I always was in good shape and perfect health condition. This didn’t last for long. One day after a check up I was told that my condition had changed dramatically during the last year and I had to be operated again. I didn’t complain for anything and I felt in good shape, I just couldn’t realise how this can happen to me again. Nobody has ever told me that my heart defect can recover during years…I felt betrayed and deceived…again! I had so many questions in my head – what will happen with my study at the university, my friends, my whole life – could it be a normal life? Is this the way I’ll have to live – not knowing what expects me tomorrow?…. This was a hard period for me. Then I realised how important role the Child’s Heart Association plays in my life and the friends I met there. Most of them have very serious problems and more than one operation, they’ve survived all my pains and fears and they knew the answers of my questions. Their support gave me the strength to face my destiny and to realise it is unique. I realised also that my only chance is to tell to myself every day – I WANT to live!"