Times are very challenging for today’s modern man because the whirlwind of life is fast and the obligations that society imposes on us are hard to grasp even when you are healthy, “the healthiest in the world”.
How is it then, when this rhythm of life in 21 century grinds you in a manner of Japanese trains speed, and with all the suffering from a serious illness for which you know that there is no complete cure, but only drugs which can do so much to relieve symptoms. Of course, if you are lucky enough to be born in a developed and rich country where medicines are available for your illness because it is not enough that you are ill, but it should be added that you suffer from a rare disease, about which few doctors know anything, and probably no one knows everything. You are generally lucky to be properly diagnosed with what happened to you, while you are still alive!
It starts so that you feel bad, you get tired after 3 steps, the 2nd floor looks like an endeavor to conquer the peaks of the Himalayas, then you think you are out of shape because you haven’t exercised for a while, so you have gained a few pounds. You see that there is a tram that you have to go on, it doesn’t matter, you’ll rather wait half an hour more than to run and catch that one. Your heart beats insanely fast at the thought that you need to hurry somewhere. It is not uncommon to wake up on the tiles in the bathroom, but not because of alcohol, but because you suddenly got out of bed and came to the bathroom, and there everything turned black and you are out of breath but also unconscious. You go to work the next day with a bruise on your forehead, but it’s good, at least you didn’t strike your eye or break your tooth on the edge of the bathroom cabinet when you fell… Because your teeth are very expensive too, God forbid you to need a new set ..!
In the hospital, your ward is on the 4th floor, and when you go for a check-up it doesn’t even occur to you to climb the stairs (except when the elevator is broken, and there was that, and then it’s best to leave for a check-up a few hours before the scheduled time). In situations when the elevator still works, you politely wait in front of it with a few other older people, because all the young people prefer to run up the stairs than to squat in 2 m2 with the others. Then they measure you, your elders, from head to toe. They close their mouths and roll their eyes, they are amazed … so the braver ones, there were some, find it appropriate to call me in style; when I was your age I went to the 2836 floor and carried a 52kg backpack on my back and … and I don’t remember asking you anything? ??
The fact that I look healthy, tidy, and with make-up does not diminish the fact that I have a 100 % disability, it just doesn’t write on my forehead! Fortunately, the law did not stipulate that such things be obligatorily tattooed in a visible place, thank heavens. At least, sometimes I think to myself and that’s better than explaining to them what’s wrong with me. Because when I say I suffer from pulmonary hypertension, it’s as if I’ve said some formula that only those who have studied nuclear physics understand. The look on their faces (of the bull from the wagon) reveals that they have never heard…
Imagine then 1982, the place of action, Yugoslavia, yes, yes … So there was a state called Yugoslavia, those a little older remember well, not only the name of the state, but also the precious liquid, blood, shed at the time when the state began to disintegrate in the nineties of the last century, and when the members sought their independence and autonomy. Blood is the most you can give of yourself, and many have given both blood and life to have their homeland Croatia today. So imagine a situation when your parents brought you to the hospital in 1982 (I was only 7 at the time), and after a very short time (surprisingly short, because even today people look for, and wait for a real diagnosis for months or even years) visiting several doctors from all branches of medicine. The word, PULMONARY HYPERTENSION,(heard for the first time in life), no cure, no help, and take the little one home because she is dying. Yes, you read that right, 1982, there is no cure, she is dying … I don’t want to mention or write the name of the doctor who uttered the worst sentence my parents have ever heard … she is dying … she is dying … I still remember this character until today, I don’t blame him for not doing anything, he was already in his old age, probably tired of trying to save some children before me without success, so he simply decided to let me go to “the other side” …
However, heaven had other plans for me. At that time, just at the beginning of his successful, laudable career, a young doctor decided to fight for me. The doctor who managed to save my life in 1982. Doctor! He deserves to write his name in capital letters. DOCTOR! He deserves to have people bow his head when his name is mentioned because after me he has saved many children… A doctor who extended my life with the drugs he had, long enough that I received therapies that make my breathing and life easier. A doctor who gave me at least 38 years of life! Hey, 38 years !!! The average call duration of life with pulmonary hypertension that is not treated is 3.8 years!
Despite a difficult diagnosis, a life without drugs during the war I mentioned, I managed to live life to the fullest with my positive thinking and attitude. I don’t have children because they explicitly forbade me to get pregnant because of the diagnosis, but the universe took care of that too and sent me a partner with children and over time it became as if they were my own. I have a steady job, family, and friends. Sometimes it seems to the outside observers that I am completely healthy because my disability is invisible!
To get the universe his debt back, five years ago I started the association Blue Wings, which brings together people with pulmonary hypertension in Croatia, provides the necessary moral and psychological support to members, and works to promote awareness of PAH in Croatia through various projects. The Blue Wings are part of the European Association of PAH Patients, which brings together over 30 member countries with the same goal. Within PHAE, I am currently the vice president, while in Croatia I am the president of the association.
I hope that my story has given you the strength to deal more easily with your diagnoses and disability, because now everyone is facing the fight against the Covid-19 virus, and with my diagnosis, I belong to the high-risk group!