“If you're going through hell, keep going.”
2019 was the year when the Churg-Strauss-Syndrome struck for good. Still the horrors had no name and the consequences were hidden in the shadows.
During a wonderful vacation at the Atlantic coast of Spain, the soles of my feet were permanently hurting, regardless if at motion or in rest. Day and night.
A pyelitis with horrible pain started when I came back to work in June. As if this weren’t enough, a cystitis with bloody urine joined the ill-omened pattern. My Urologist prescribed antibiotics which stopped the immediate suffering, but an indescribable weakness beyond belief persisted. I could hardly sit upright on a chair.
Since that time a tenacious sinusitis lingered without an end and caused an unbearable pressure inside my head. My head permanently felt like a foot with pins and needles when I went to sleep. I lost my sense of taste and smell. Foamy secretion dropped out of my nose. Going to the local ENT specialist was not really an option for me, as they have not taken me seriously in the past. Alongside the headaches came permanent sweating and a body temperature of 37,5 to 38,5 degrees Celsius. I had to change my wet clothes multiple times a day. At night I wrapped my body in towels.
I tried to go to work for half-days. Despite warm summer temperatures I dressed myself in long pants, woolen socks, and a warm sweater. Even the slightest breath of wind was painful and caused me to come down with a cold. I couldn’t eat and lost 15 % of my body weight. At last, the exhaustion was overwhelming. I gave up.
Early August, I went to my general practitioner. I could hardly explain my condition. The permanent headache, feeling too weak to think or talk. All I could do is try to stay alive. I focused all my energy on existing. Breath by breath. I couldn’t think about tomorrow or even about the next step of my feet ahead. I couldn’t think at all. After my third visit to the practitioner, he finally agreed to a blood count. The percentage of eosinophils in my blood was shocking: 24%.
My doctor suggested I should wait and see. Maybe it’s just an allergy. Next check is recommended in 4 weeks. But my suffering continued without pause and after a week I was completely desperate. I came back to his practice. This time the eosinophils summed up to alarmingly 40%.
If the term “luck” can find its way into this story, then this is one of the few places to which it belongs: My practitioner pulled out a book out his shelf, browsed in its pages, and wrote some mysterious words on a sheet of paper: Churg-Strauss-Syndrome. He called a lung specialist and made an appointment for me. When I left his practice, he told me not to worry, it’s unlikely I would have this serious inflammation of blood vessels (“vasculitis”), which is an auto immune disease and also known as eosinophilic granulomatosis with polyangiitis (EGPA). Although unlikely, he would nevertheless like to double-check to make sure.
Diagnosis of an autoimmune disease is incredibly hard. At that moment of time my practitioner had an intuition. I owe him a lot of credit for sending me into the right direction.
When I arrived at the lung specialist another two weeks later, he looked at me and wondered why I was stopping by. “You look fine”, he told me bluntly. But then he scanned the blood count, and read the information he had received from my practitioner. He paused, took another long glance at me. Slowly he said: “Looking twice, I see a very sick woman sitting in front of me”. Then he sent me directly to a hospital for further diagnosis. That hospital is specialized for lung diseases.
In parallel, we also tried on our own to get treatment in the rheumatology department of our local university clinic, but there was no bed available for me.
The hospital to which I was sent by my lung specialist, did a thorough inventory of my condition: Computer tomography of lungs, sinuses, bronchoscopy, bronchoalveolar lavage, and gastroscopy. Outcome was 36% eosinophils in the bronchoalveolar lavage and ground glass opacity in the lungs. No further proof of vasculitis in the stomach. Recommendation was a cortisone treatment to address the inflammation of eosinophils. Best would be to continue my journey in a hospital, which specializes in rheumatology.