Cryptogenic Organizing Pneumonitis

Let me tell you a story.

A little over a month ago, on September 9, my Mom emailed me a short, panicked message: “Call Me.” She couldn’t just call me herself, of course, since she lives in Utah and I live in Germany, an 8-hour difference, and her mid-afternoon email arrived long after I should have been in bed. But I’m never in bed when I’m supposed to be, so I was awake, and I gave her a call. The news was bad, but not really shattering: my Dad was sick, and had been for weeks, and now it was worse than ever and he refused to go to a doctor. This is not surprising, because Dad never goes to doctors when he can help it. There was a lot of “Oh, you know Dad,” and “It’s probably just his asthma,” and so on, but my Mom wasn’t mollified. She’s known this man for decades, and she can tell when he’s legitimately sick. He could barely walk without turning gray and gasping for air, and she was worried.

The next day Dad went to work, walked up the stairs to his office, and called the doctor. That’s how we knew it was serious–he called the doctor on his own, voluntarily. He went in and was almost immediately diagnosed with pneumonia, and “maybe a heart attack,” which is a weird thing to hear from a doctor. You want to know if it is or isn’t a heart attack, none of this “maybe” nonsense. The doctor did ever test he could think of, held Dad as long as he could without actually hospitalizing him, and made another appointment for the following day. Dad’s condition worsened, and when he went back in the next day the doctor did some more tests and sent him straight to the hospital; the pneumonia had now been upgraded to “double pneumonia,” which makes about as much sense as “maybe a heart attack,” but at least now the “maybe” had been downgraded to “probably not,” so that was something.

All through this, of course, my Mom would call me–or email me to call her–every day, because she needed someone to talk to. Of her three children, my sister lives in Ohio and has crippling health problems of her own, and my brother, the only one still left in Utah, has a panic disorder: not exactly the kind of person you can unload all your troubles on. She needed someone she could call and say “I think he’s really sick this time, and I don’t know what to do,” and getting those calls and knowing there was nothing I could do from the other side of the world was maddening.

Dad ended up on oxygen, three liters of pressure, which was low enough that he could leave the hospital and push around one of those little tanks of wheels. This was just in time for my grandparents’ 60th anniversary cruise, which is one of the more surreal parts of the story: in the middle of his mysterious “double pneumonia,” my Dad took off for a week long cruise to Mexico. This sounds luxurious, but in hindsight it may have been a lifesaver, because the move from Utah’s thin, high-elevation, full-of-smoke-from-forest-fires air down to Mexico’s warm, rich, humid air did wonders for his lungs. He could even walk around the boat a bit without the oxygen, which was a bigger deal than we realized.

(The cruise, by the way, was hilarious: it was my grandparents’ 60th anniversary, and my grandpa’s 80th birthday, so they’d invited all their children–my aunts and uncles–and bought the tickets a year in advance. Then my aunt broke her leg, and my dad got pneumonia, and my uncle had a cold, and in the end my 80-year-old grandpa and my Mom with MS were the healthiest people in the group.)

With two days left to go on the cruise, my Dad got suddenly worse–still healthy enough that he could fly home, but barely. Instead of three liters of oxygen and leisurely walks around the block, he was at ten liters of oxygen just to lie in bed doing nothing; fifteen if he had to get up to use the restroom. He was back in the hospital full time, but in a better one this time, and my complete inability to do anything about it was driving me up the wall. My mom would send out positive updates, assuring us all that everything was fine, but the situation only got worse. The doctors would try a sure-fire pneumonia cure and it would do nothing; they’d try another, and the same thing happened. On Sunday, October 7, his lungs failed completely. He required 60 liters of oxygen pressure just to live–the machine was literally breathing for him. He was rushed to the ICU, and my Mom put on her bravest face, but there’s only so many ways you can spin “his lungs have failed and nothing works and he’s getting worse faster than the hospital can keep up.” I decided to hell with the Atlantic ocean, I was going home, and I booked a flight for the next morning. I was home within 24 hours of hearing the news, and my sister soon after, and though none of us would say it out loud, we were all starting to wonder if this was it. If we were going home to help, or to say goodbye.

But a lot, it turns out, can happen in 24 hours. After days and weeks of diagnosing and treating and trying and failing, the doctors figured out what it was: Cryptogenic Organizing Pneumonitis, which is a fancy way of saying “there’s something growing in your lungs but we don’t know what and none of our medicines work on it.” Most pneumonia is bacterial, and the rest is viral, and all the drugs they use to treat it work on those two causes, but with COP the muck in your lungs is something else–I don’t know what, fungus maybe, or some kind of evil spirits. It’s very rare, and very dangerous, and it’s called “organizing” because it literally gets in and starts remodeling your lungs to suit its own purposes, none of which are breathing. But in every other way it looks and acts like normal pneumonia, so the only way to diagnose it is to try and fail with every other pneumonia in the book, and when none of them work you know it’s COP, and you know exactly how to treat it. This happened while I was in the air, and the doctors started him on prednisone, and by the time I landed and raced to the hospital he had turned a corner. He had gotten slightly–every so slightly–better, the first time in over a month that a change had been positive.

My sister finally made it (her flight itinerary on US Air involved not one but two broken planes, a full day of delays, and an overnight stay in Phoenix), and together we set about trying to help. I cleaned some of the house. My sister took our Mom shopping. We spent hours in the hospital talking to Dad–he rarely talked back, of course–and hours more hanging out with Mom, watching movies, doing laundry, doing whatever we could to make life easier, or better, or at the very least more normal. Inspired by Mary Robinette Kowal, who reads her manuscripts aloud as part of an editing pass, I read my latest manuscript to my Dad, who loved it. We watched him progress through various benchmarks of breathing ability–using less pressure, using different masks, taking longer walks, achieving higher levels of oxygen saturation. We became intimately familiar with the minutia of the equipment, and the nurses, and even the terminology.

The first day I arrived I talked to the doctor, who introduced COP to my Dad as “that long confusing word we talked about before.” I asked what the word was, and he asked if I had a medical background. “Not really,” I told him, “but I’ve published five medical thrillers,” which is only a slight exaggeration: the John Cleaver books are not overtly medical, but they are directly concerned with psychiatric evaluation and profiling; PARTIALS is at least one third medical thriller, with a very detailed study of virology, and THE HOLLOW CITY is set in a mental hospital with a plot centered around diagnosis, neural chemistry, and drug interactions. I didn’t mention BLACKER DARKNESS. The doctor was impressed enough that he started taking me much more seriously than the rest of the family, opening up about that their theories and treatments and even inviting me to their meetings. I had a front row seat to everything they thought and tried and did, and it was awesome. And every day, my Dad got a little bit better.

My last night in Utah was Sunday, October 14. He was on a canula now instead of a mask, and they were giving him 40% oxygen, and he was maintaining a steady 91% saturation rate. The feeding tube was gone, and he could have real food again. He was still in the ICU, but only because they were concerned that something COULD go wrong, because he’d been so bad for so long they didn’t dare believe that he was good again. I set up my laptop on the little rolling hospital table, and we watched THE AVENGERS and ate pumpkin pie. It was the most normal thing he’d done in over a month. The next day I flew home, and the day after that they moved him out of the ICU, and somehow, whether through prayers or miracles or drugs or sheer force of will his numbers went up. Instead of 91% saturation he was maintaining a strong 95%, and even when he got up to walk it didn’t drop below 90%. I suspect that the simple act of moving out of the ICU–the most tangible sign of progress yet–gave him a renewed vigor, and as he cheered up his body started fighting harder. This morning I had another message from my Mom, not urgent but jubilant, saying that he is probably going home tomorrow. You have to realize that this is amazing: even with the progress we’d seen the week before we expected him to be in the hospital at least another week; his improvement was steady, but it was slow. And then for some reason it wasn’t slow anymore. The doctor was almost in tears, and Mom said she could see him physically trying not to say “just one week ago we thought he was gone,” because everybody thought he was gone. In ten days he’d progressed from “alien monsters are eating your lungs and we can’t do anything about it” to “you’re great, we’ll send you home tomorrow.” It was shocking, but it was exactly the kind of shocking we love.

My Dad’s health isn’t perfect, and it might never be again. The disease had a whole month to remodel his lungs, and they never did figure out what was up with his heart. Life is crazy, and anything can happen, and if there’s one thing I learned from the doctors it was “Don’t make predictions because they’re almost always wrong.” I don’t know what will happen next, but my Dad’s alive, and breathing, and going home, and for now that’s the best news ever.