After my treating pulmonologist expelled me from the room and thus his practice, I decided to go in search of a new pulmonologist. It took several months before I found a specialist who could admit me. In the meantime, my visits to the emergency room of the accident hospital became common rituals.
Part 2
As my father and I stood dumbfounded outside the office of my pulmonologist at the time, we looked at each other and didn't quite know what to say. So was this my diagnosis? I can't have any pain at all? Was I imagining all of this?
It took me a few days to regain my composure and courage. My parents were also at a loss. In the past weeks and months I had been to various doctors and orthopedists. I had been sent to a cardiologist with a suspicion of a serious heart defect, who carried out various tests and finally came to the conclusion that my heart was perfectly healthy. However, he suspected that the pain was actually coming from the lungs. He encouraged me to find a new pulmonologist and not to be discouraged by what the other pulmonologist said. I followed his advice and started looking.
Setbacks
In addition to my search, however, my normal school day continued. I drove one hour to school every morning, completed all subjects, and drove another hour home to my parents in the evening. I did some of my schoolwork and preparations for my German-French Abitur on the train and after dinner. Actually, one could think, a completely normal everyday life of an 18-year-old, who stands shortly before the Abitur. Actually. While during the day I almost crept up the school stairs to be able to breathe at all and had to let the teachers call me a malingerer in gym class, although I took part in every exam, in the evening I sat highly motivated at my PC and researched as much as possible about my symptoms and possible illnesses. Every day was incredibly exhausting, but I felt that my energy seemed endless. I just wanted to know what in my chest was causing this enormous pain and why I could hardly breathe.
Even though my ambition was aroused, I was unfortunately hit by a number of setbacks during that time. Setbacks that made waiting for a diagnosis a balancing act.
By now it had become late fall and I had almost gotten used to the pain and extreme shortness of breath. However, the fainting spells were now starting. Although I managed to get to school, my body kept breaking down and collapsing. Almost every time, I called my father, who went to pick me up and take me to the hospital. This time, too: it took us almost 40 minutes to get to Unfallkrankenhaus Berlin, in the east of the city. When we finally arrived, there was only so much time left, so my father accompanied me to the emergency room and said goodbye. He had to get back to work.
I actually felt almost like a malingerer at that point. Seeing the other people who must have gotten to the ER long before me, waiting with severe injuries and pain for their name to be called, I felt guilty. Over and over again, I wondered if the doctors hadn't been right. While I was still completely absorbed in my thoughts, I was already called by a young doctor and led into a treatment room. Once there, I took a seat and told the story that I had already memorized in all its details in my sleep. I described the pain, the results from CT, MRI, X-ray and ultrasound examinations and at the end of my narration I looked into an expressionless face. Contrary to my expectation, however, the doctor asked me something that I have not forgotten to this day: "Are you the young patient who was here in the ER the other day and who has this rare lung disease?" Puzzled, I looked at him. I didn't know the answer to that. I affirmed that I had been here just recently with the exact same symptoms. However, I knew nothing about a rare disease. At that moment he already waved me off and said "Well, then you would have been told." A few hours passed before I left the hospital with a diagnosis of "circulatory dysregulation." Everything as usual, I thought.
At home, tears came to my eyes and I just couldn't stop feeling sorry for myself. Meanwhile, as I was telling my mother about it late that afternoon, I remembered the doctor's question, "Are you the young patient who was here in the ER the other day who has this rare lung disease?" Before I had even finished speaking, I jumped up and ran to my room. I really needed to find the last report from my stay at the hospital. When I finally held it in my hands, I was so excited that I could hardly read it with concentration. It took me a few seconds to regain my composure and then I saw it: Diagnosis: Swyer-James-MacLeod syndrome. I couldn't believe it. Was this really my report? Or had they made a mistake back then? And what was this syndrome supposed to mean anyway? I ran back into the living room, where my father was sitting in the meantime. My parents looked at me a bit puzzled. "I found it!" I almost shouted. "Look, it says 'Swyer-James-MacLeod syndrome' under diagnosis." My parents studied the report. "That's right," they said almost in chorus. "But nobody told us about that back then," my father said with a frown. I nodded slowly, thinking back to the second-to-last visit to the hospital. At that time, I had been watching a movie with my parents one Sunday evening and had suddenly developed such extreme shortness of breath that my father took me to the emergency room. He had waited by my side all night, hoping just as I did to learn what might explain the shortness of breath. But instead, we waited until the wee hours of the next morning, and only when we asked did they tell us that we could actually leave because there had been a shift change and nothing abnormal had been transmitted.
Now, however, I held the report of that very night in my hands and read it properly for the first time. This diagnosis was definitely something to work with, I thought, and so I began my research. I literally sucked all the content I could find on this disease from the net. However, it was 2009 and much of the content that exists today did not exist at that time. This made my search more difficult, but still I found more and more parallels to the pain I was experiencing. I was convinced that I had to have this syndrome.
The diagnosis
More weeks passed until I was finally able to switch to a new pulmonary specialist. The search for a specialist had been quite difficult. When I called doctors' offices, I was repeatedly turned down because no new patients were being accepted or I was told to go back to my previous pulmonologist.
So when I sat with my new pulmonologist, 11 months after my pain first started, to my amazement, I was very relaxed. I had spent the last few months in so many offices and told my story to so many doctors that I had become completely unemotional. The tears I had often shed in the beginning had given way to a certain indifference.
It was the same this time. I had already prepared myself to tell my story again, to be examined and to go home again without a diagnosis. But I should have been mistaken. The gray-haired doctor, to whom I now sat opposite, studied all my files with interest. Every X-ray was spread out on the table and every report from the hospital was arranged chronologically. "You've had a fair amount of doctor visits," he said without looking up. "Let me take a listen to your lungs." As he listened to the lungs, he kept giving a long drawn out "Hmmm." Then he sat back down and asked me to do the same. I took a seat and he looked at me with calm eyes. "So the good news is, all the research you've done hasn't been in vain. They help us get a good picture. In your particular case, I'd like to consult with one of my colleagues. He is the head physician of a lung clinic here in Berlin and knows this subject very well. Please take a seat outside for a moment and I will call my colleague. Afterwards, I will call you again."
After I had taken a seat in front of the room, I was close to tears. What was all this supposed to mean? Do I have a terminal illness? Why couldn't he just tell me what I had? My heart was beating faster and faster and I felt like an eternity had already passed. At that moment the door was opened and the doctor asked me to come in again. As he sat across from me again, he looked at me and began, "I have now consulted with my colleague and we are convinced that you have the rare lung disease Swyer-James Syndrome." He continued to speak calmly, explaining that this disease was incurable, but that we could find a solution to minimize it so that I could regain a much better quality of life. "Right now you have the lung volume of a 90 year old and we want to change that". He concluded by telling me to go to his colleague at the pulmonary clinic with all my documents and he would take care of the issue.
When I left the practice, I called my mother directly. Even before I could express what had just happened, tears were running down my cheeks. I tried to speak, but the words just wouldn't come out. At that moment, I heard my mother's voice tremble and she struggled with the tears. Unlike me, however, she managed to speak. "What's wrong, sweetie? What did the doctor say?" And then it worked, I recounted within seconds what the doctor had calmly explained to me. I was almost rolling over, I was talking so fast. When I finished, I heard my mother exhale a long breath. "I knew you would. I always believed you."
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Here you go.