CSS in the Czech Republic by Jan Pokorny January 2006

My name is Jan Pokorny. I live in Brno, in the Czech republic – a country in Central Europe.

English is not my first language, so please apologize my mistakes.

I was diagnosed with Churg-Strauss syndrome in December 1999, when I was 18 years old. But there was quite a long journey to getting this strange diagnosis.

First of all I have to say that I have got asthma diagnose since 1997.

In May 1999 I passed my A levels at high school. During my exam preparation (we call it "saint week“ in my country) I started to lose my weight. I did not care about it, because I felt good. In July my asthma got worse – I could not breathe easily, I was tired, I could not do everything, what I wanted to. I got pneumonia – doctor said. I went to a county hospital, where I spent one week. Seven drips make me healthy. But I was still losing my weight progressively.

In September I started studying at university. My summer troubles suddenly came back. My health got worse again – worse breathing, worse condition, difficult walking, etc. I had to interrupt my study and went to the same hospital again. I was x-rayed and doctor said: "Guy, you have pulmonary tuberculosis. Your lung mucosa seems started to
crumble“. Great news, I thought.

So, this hospitalization began. I had an isolated room – I spent one month in the room on my own (I wanted an isolated room). During this "isolation“ a nurse injected me some kind of analgesic once and I suffered a blackout which lasted for several minutes. I woke up in the intensive care room and beautiful nurses took care of me. My first thought was "I'm dead and came to heaven.“ After two days I returned to my room. I was in the hospital, but my condition still got worse. I still lost my weight, I could not eat, drink, sleep, move. I often heaved out. I started to fall into depression and anger. I hated visits, I hated nurses, I hated doctors, I hated God, I hated the whole world.

Doctors tested some theories about my diagnose, but each tests crashed. They cured me for tuberculosis, for cancer, for hard pneumonia - they destroyed the rest of my condition. They damaged my lungs more, damaged my liver, kidneys, my stomach, my bones, my muscles. They did not know, what they are curing, so they tried out to cure at least my symptoms. The last week at the hospital I spent with oxygen support.

The doctors decided to send me home after a month. They said: “Your mental state is not good. Maybe it gets better at home“. Later I found out, that they send me to death. Supposedly they did not want me to die at the county hospital. They could not confess they failed their cure.

When I was leaving the hospital, my brother had to support me, because I could not walk. I was very thin so I did not have much power and I could not breathe so well. I spent about two weeks at home. My father left his job and took care of me. He cooked me everything I had taste for. But everything I ate I heaved out immediately. So I was
still losing my weight and strength. When I wanted to go to the toilet and my father was not close by me, I crawled.

My depression and anger got deeper. My ex-girlfriend broke up with me – she said: "You're not ill, you try to be a martyr, you only sham that and do not take care about me. You are a selfish person.“ Suddenly cruel pains of muscles and joints appeared. I suffered whole day and night, no analgesic was effective. One day my brother sent his friend–internist to check my troubles. He was surprised with my actual state, called his friend (other internist) and next day I travelled to the teaching hospital.

In this hospital I spent about three weeks. Doctors could not understand, how could I be released from the county hospital in this terrible state. In this time I had tried nearly all known examines and tests, excluding gynaecological. A lot of huge drips, synthetic nutrition, injections, surgeries etc. My pains were resistant to analgesic, including
morphine. I had to withstand that cruel pains and hope for a better future. At the end of this three weeks (tightly before Christmas) my doctors found the diagnose and started to cure. It was supposedly very tough to find that. They had to use information from many sources – even from american medical literature. They told me, that I have
Churg-Strauss vasculitis with lungs affection and explained me, what does it mean. Than added, that I am the first patient with this diagnose in my country that time (I think there are more patients today maybe two or three). They started to cure me with high doses of corticoids in drips. I generally lost 34 kilograms of my weight since I was first hospitalized. But now my condition rose, I got taste for food again. I remember how I bawled out whole round of doctors (including senior consultant and clinic chief), because I was hungry and no one gave me any food. They started to laugh, apologize me with shaking hands and tears in their eyes, celebrate and brought me a lot of food, because taste for food was the best mark of getting better in my case.

Before they release me to home care, my doctor came to me and said: "You know, I was very frightened, because I thought that I couldn’t save your life. You were very close to the gate of death, very close and you had a small odds for surviving. You must be a very strong man, because it’s a very dangerous disease and in many similar cases the end was death. But you beat up your troubles and won the fight of your life, you’re very strong guy."

When I came back from hospital, I started to be cured by peroral medicaments. High doses of Prednison and asthma medicaments were progressively decreased, but not totally removed. I still take low doses of Prednison and take my asthma treatment at the present.

Since that time I have changed my life. I changed my priorities, I got to know my friends and people in my neighborhood. I changed my opinion for many people – some are better, some worse than I thought. I found the strength to cope with troubles of common life. When I begin to fall into some sadness or melancholia, I remember my experience, I remember my successful fight with illness and suddenly my courage is back.

I discovered cycling as a way of fighting. I love cycling and biking, I do both as much as I can. It is the way of rising my condition, rising the level of endorphin natural way, equilibrate my weight etc. It is my way of making me happy. I enjoy it most. I ride a bicycle (50 kilometers in total) to work every day (not in winter). It is something I need for living.

Lance Armstrong inspired me, so I see, that there is a chance to live with illness.

I graduated at university in July 2005 and became a clinical psychologist.

So, this is my story

Jan Pokorny
January 2006

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