Since 2012, it’s defined me. You work hard. You’re nice to people. You try to make something of your life. It doesn’t matter. Now I’m the ‘Bubble Boy’.
I have an autoimmune disease. It used to be called “Wegener’s Vasculitis”. (Wegener was a nazi apparently, thus the name change). It’s now GPA for short. Basically, it attacks white guys in their 40s and 80s. 20 years ago it was a death sentence. There are maybe 500 cases a year. The cause is unknown. I wish I knew. I’d make changes. Lifestyle, genetics, environment, who knows? My immune system attacked my lungs. If you don’t identify it and treat it soon enough, it moves onto the kidneys and a person can end up on dialysis or dead. Many older doctors are amazed I’m still alive. As of right now, it’s in remission. There hasn’t been a trace in my blood in years. I wish the story ended there. It doesn’t.
It started on Oscar night 2012 (the last time Billy Crystal hosted). I started coughing up blood. After going to a clinic thinking I just needed antibiotics, I spent the night in a local hospital, then was whisked by ambulance to the rheumatologists at Providence St. Peter in Olympia. The hospital where I was born was almost the hospital where I died.
In April and March of 2012, I spent 30 days in the hospital, most of it in ICU. I couldn’t be stabilized for a biopsy. When I was finally strong enough, I went into a simple lung biopsy with the knowledge that I might not make it. I almost didn’t. Being intubated for just a few hours stretched into 9 days. Thanks to a team of doctors and nurses and my wife, I pulled through. One doctor said, “You never crashed, but you were clipping the tops of trees.”
Out of the hospital and ready to get back to my life, I started a regimen of Cytoxan, a chemotherapy infusion. The GPA quickly went into remission and I thought that would be the end of my health scares for another 20 years. That’s actually where the problems started. The drugs suppressed my immune system and opened the door for an unwanted guest.
Sometime, somewhere I inhaled a fungus and it stuck. It stuck in my neck and my brain. While your immune system can fight off all kinds of things in the air, I couldn’t. As one doctor put it, “It’s the drugs, man.”
At first doctors didn’t think it would be an issue, just take some anti fungal meds and the lesions would be gone in 9 to 12 months. They were wrong. The fungus caused a relapse in the GPA and sent me back to the ICU in late April. I spent 60 days in the hospital this time, 13 days intubated. The Tuesday after Memorial Day, doctors told my wife to prepare for the worst. I wasn’t going to make it.
Days later, I finally woke up under a completely different set of circumstances: I couldn’t walk or talk. The lesion in my neck paralyzed my entire left side, even my face was drooping. Because I was intubated for so long, my throat was trached and I couldn’t talk. But I was happy to be alive.
The next 40 days in the hospital were hell. I had to learn how to walk, talk, eat, breathe, pretty much everything all over again. I had no strength, stamina, or lung capacity, yet I had to come back from three near death experiences. It was the biggest challenge of my life, but all of my tools had been stripped from me. I was frustrated, humiliated, and grateful all at once. This is just an overview of my diagnosis and struggles, I’ll share more stories in later blogs. While I posted everything about my journey in social media, it’s so complicated, most people still don’t understand what happened. Just know that doctors didn’t expect me to walk or use my left arm again. I beat their predictions and I beat death. The score is still Jim: 4 Death: 0