In 2008 my whole life, as I have known it, was mixed up. Every day was characterized by pain and countless stays in waiting rooms. Until the diagnosis finally came: Swyer-James syndrome.
When I think back to the time I was looking for a diagnosis together with the doctors, I can hardly believe that it took over a year and I also wrote my Abitur at the same time. The last years of school just raced past me like a train without a stop. All I can remember to this day are the numerous doctor's appointments and examinations before and after school, the many tears and the lack of understanding by outsiders. This is my story.
The pain
Tears of pain suddenly came into my eyes and the icy winter air, which I had breathed in easily before, hardly reached my lungs.
It was one of those dreary winter days in Berlin shortly after New Year's Eve 2008. I had been at a new school since September after completing a school year in the south of France. A few days before going to school again, I treated myself to a relaxing day in the sauna. Everything was just perfect: the snow on the Spree that you could see from the sauna and the hot temperatures that made me forget the freezing cold outside. When I stepped out onto the street fully rested and wrapped up, I didn't know that a few minutes later my whole life would be turned upside down. I was on my way to the S-Bahn to go home to my parents when I felt an unprecedented pain. I had only stood at the traffic light and waited for it to turn green when my torso jerked to the right and stopped there. Tears of pain suddenly came into my eyes and the icy winter air, which I had breathed in easily before, hardly reached my lungs. After I recovered from the first shock, I walked slowly and heavily to the S-Bahn. Every step up the short stairs to the platform felt like I had run a marathon before. When I got home I told my parents about my experience. As I tried to describe the pain with fervor, I saw concern and a hint of amusement on their faces. To be fair, you have to say that I was still leaning to the right and could have competed with the Hunchback of Notre-Dame. Since it was already Saturday evening and we assumed that it probably had to be an inflammation of the pleura or something similar, I tried to rest for the rest of the weekend. I would simply have the issue clarified directly with the family doctor on Monday.
Monday morning - the medical marathon begins I didn't spend the first week of January in the new school year at school as planned, but in various waiting rooms. After I went straight to my family doctor on Monday, he confirmed that it would most likely be an inflammation of the pleura. I got a kind of corset that I should wear around the clock from now on. He also ordered that I go to my pulmologist, whom I had been treating for asthma for as long as I could think of, immediately afterwards. He knows best how to deal with this issue. Said and done. The same day, I consulted my pulmologist, who took a short time to listen to my concerns and decided to have an X-ray taken so that we could see if the pleurisy was indeed an infection. Together with my father, I went straight to radiology, which intervened the next day and took the picture ordered by the doctor. After sitting in the radiology waiting room until all the other patients had left, we spoke to the radiology assistants whether they had forgotten me. The assistant shook her head and asked us to sit down again. "Funny, isn't it?" I asked my father. "Why don't they just give us the pictures and we can go?" Before he could answer, a lady in a white coat came up to us and took a seat directly in front of us. A strange feeling rose in me. Was it more serious than pleurisy? Were my ribs miraculously broken? The doctor suddenly pulled me out of my thoughts. "I'm sorry that you had to wait so long. We looked at the pictures in peace and also consulted with other colleagues again. Your lungs has an, at least, atypically bright area on the left side. You see here. ", she held out the x-ray. "Usually, this area should be dark here." "And what does that mean?" Asked my father. "Well, we assume that it is not a classic pleurisy. Especially considering that your daughter describes the pain in the right side. However, the light area is on the left side. We have to assume that the pain has a different origin. " The conversation flew past me. I wasn't sure I understood the woman in the white coat. Was I sick now? Or did I have two different problems? My father seemed to be able to follow undeterred: "What does this mean now? Where can the pain come from?" The doctor looked at us briefly, as if weighing her answer exactly. "We have already informed your pulmologist. He can explain everything to you in detail. However, what I can tell you is that this area", she pointed to the light, left lung, "is not properly supplied with blood and thus the functionality is limited However, this condition does not appear to have been prevalent for a few days and must also be visible on previous recordings, so I urge you to discuss this with your pulmonologist, who told us on the phone that you would like to go straight to his office can."
The pulmologist
"Anyway, it's not possible that you have this pain. You are far too young ..."
The message hadn't been digested properly and my father and I were already sitting at my pulmonologist. A medium-sized, wiry fifties who carefully studied the documents presented to him. I had been with him for more than five years and the quarterly visit to the pulmonologist was part of the morning cereal for me, as for others. In the past few years, I had mostly not gone to see him with my parents and always found the minutes I spent in his treatment room to be endless and more than uncomfortable. Now I was again accompanied by my father in front of the man who probably knew the solution to the riddle. "Pronounced hyper transparency of the left middle and upper field ...", he read out a little mumbling. He looked up and fixed his eyes on me. "Didn't you say you had pain in the right side?" Withstanding his piercing look, I said yes. "Well, everything is fine on the right. And I'm just seeing that you still have a CT appointment the day after tomorrow anyway.", He paused briefly and looked at us. "Anyway, it is not possible that you have this pain. You are far too young and the lungs do not cause any pain. Go to the CT appointment and then we will look at the finding. Goodbye!" Before we knew it, my father and I were standing in front of his treatment room. We shrugged and perplexed, we left the practice.
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