Adam Konkol, musician, composer, songwriter, founder of the band ŁZY. One of the longest living people in the world with Eisenmenger syndrome, ambassador of the campaign to raise awareness of pulmonary arterial hypertension.
EDUCATION NEVER ENOUGH
How long have you been ill and what is your illness?
My congenital heart defect was diagnosed when I was half a year old and I spent a lot of time in hospitals having pneumonia. Grandma told me that at the time I had more injections than the rest of our family in my entire life. Eisenmenger’s syndrome, because that’s what my disease is called, is mainly due to the fact that from year to year my condition is getting weaker and more difficult for me to breathe. I get tired even when I climb to the first floor or walk at a faster pace. In addition, with great effort, I have life-threatening pulmonary hemorrhages, my body produces too much blood, which doctors have to regularly bleed me during checkups at the hospital.
What are the limitations of the disease?
First of all, I cannot do any sport and it is more and more difficult for me to move around on my own – which is a pity because I love competition and I would like to test myself in several disciplines. So I have limitations when choosing a hobby, it is difficult for me to visit my friends who live on the upper floors, I cannot function in multi-storey buildings without an elevator. And the most interesting thing is that we have a rehearsal room on the first floor, so my friends are laughing that they should set different rehearsal times for me and for everyone else, because I will be climbing the stairs longer. I also have to watch out for minor injuries or fractures and lead a healthy lifestyle, because no surgery can put me to sleep, only local anesthesia, so even an appendectomy would be a problem.
Did you have a moment of rebellion, denial?
Probably not, but I have had periods in my life where I tried to live a normal life like a healthy person to the point where I even went to the gym and tried to get back to playing my favorite instrument, drums. However, each time such a “normal lifestyle ended with a hemorrhage and a long visit to the intensive care unit …
How important is the patient’s attitude in your disease entity?
Attitude is most important to be able to live as long as possible. First of all, you have to surround yourself with kind people, have support in your family and have someone to live for, secondly, you have to try to live “normally, do your daily activities, and thirdly, you need to be constantly under the care of a very good doctor. And always think positively, although I myself have “given up in a difficult moment …”
How has your life changed with the development of the disease?
Every year I have the impression that my body has about 5 percent less efficiency, this difference is imperceptible per year, but in the 5-year scale it is already huge for me. Every year it becomes more and more difficult for me to perform the simplest tasks, even such as dressing shoes or playing with my daughter, there was a period when I was afraid of space and I was afraid to cross the street, my eyesight deteriorated slightly and I feel sleepy practically every day.
Do you meet other sick people, although it is known that it is a rare disease, so there are not so many of you?
Once, when it was very bad with me, I met two people after lung and heart transplantation, but after their stories, I would rather not have this surgery ever. Fortunately, the level of medicine is changing rapidly and we have more and more therapeutic options. It used to be worse. When I was in pediatrics, the nurses told me that they made up pills for small children themselves, so that some of them could sleep through the night, because their dyspnea was already at such an advanced level. That is what the worst of it is, this helplessness. Man would like to help, but cannot …
From your perspective, as a patient, what is life with pulmonary arterial hypertension like?
It is very difficult. People do not understand why a healthy man cannot take his daughter in his arms or why the wife is carrying the heaviest luggage … They only see that I have two arms and two legs and are unable to imagine that an apparently healthy-looking man may simply not have strength. In elementary school, I couldn’t understand why I can’t exercise like other kids and why I can’t run and jump like them. Nevertheless, a wise teacher allowed me to practice with others “in my own way.”
Have you, like other patients, been referred to a psychiatrist or to the gym due to lack of fitness and a fanciful disease?
It never happened to me, but I had to use medications prescribed by a psychiatrist because I was afraid of another hemorrhage. Probably because there were years when I had pulmonary hemorrhages very often. In the hospital, they did not want to put me with other patients, so that no one would see me pour blood and soul over me, because I cannot keep up with spitting out, I vomit. It was after one such bleeding that I had the biggest crisis. But I didn’t give up. I told myself that I am strong, I can do it …
Why did you get involved in educational activities raising public awareness of this disease?
Because I used to need that kind of help myself. People who have a lot of knowledge about my disease helped me the most. They spent 3 minutes on me and I learned from them more than 10 years of treatment in clinics. In addition, people keep confusing pulmonary arterial hypertension with hypertension, which is common and easy to treat. They downplay the problem. Moreover, the patients themselves do not fully know that there is a drug program, that they can be treated in a modern way and that they have the right to do so. That in the XNUMXst century, nurses no longer have to rely on drugs. That is why there is never enough education!
In your interviews, you talk a lot about where you draw strength from and how important it is to support your loved ones. What would you like to tell other people who suffer from pulmonary arterial hypertension?
Try to think positively and enjoy each day and live as if each day was the last day of life!