There are two things pulmonologists use to gauge your lung function: a standardized breathing test and how many city blocks you can walk. Your numbers on the first can be total shit, but if you can still walk a quarter mile they’ll generally cut you some slack. And thanks to a healthy mixture of denial and spite, I could still walk that quarter mile, even when I was gasping for air and resting every hundred feet, and even while some medical professionals thought my time would be better spent pricing out wheelchairs.
The thing is, contempt for terminal lung disease isn’t the same as a cure, and eventually I had to stop pretending.
The average lifespan for someone with cystic fibrosis is somewhere between 34 and 40 years, depending on who you ask. I was 33 when I was airlifted to Stanford Hospital in California to be listed for a double lung transplant.
The first parts happened fast: My wife Monica and I had a party on New Year’s Eve; less than a week later I was on six liters of oxygen and struggling to walk from my couch to the bathroom. I went to see my doctors at UNM Hospital and within forty-eight hours I was in California.
I had met with the Stanford doctors before; we knew a transplant was on the table. But we, maybe, waited too long. In the first few days after I was wheeled off that plane, I was too sick to be a transplant candidate. I wouldn’t have survived the surgery. So the hospital ran tests and pumped me full of antibiotics, doing everything they could to get me as close to healthy as was possible. Monica, meanwhile, was living out of her one carry-on bag and sleeping on a cot next to me in the hospital, scrambling to find us a place to live. Our friends Steve and Sarita drove her car from Albuquerque to Palo Alto so she could be mobile. My parents flew out from New Jersey to try and help ease the burden on her shoulders.
By the beginning of February – a month from when everything went to hell – I was finally stable enough to be officially listed for a lung transplant. I was discharged from the hospital. Monica and I moved into our makeshift apartment, just the two of us, alone and a thousand miles from our lives, waiting indefinitely for a phone call we weren’t sure would ever come.
Now, for my part, all I had to do was sit around and not die, but that was a lot harder than it sounded. For starters, waiting for someone to die – whether it’s yourself, your husband, or some random donor – is not a situation to which a human brain can comfortably adjust. It’s fucked up, to put it bluntly.
And then, of course, there was the weekend my lungs starting uncontrollably hemorrhaging blood for reasons still unknown. The weekend of our second wedding anniversary. We spent it in the ICU. Instead of tropical breezes and wine and roses, Monica sat with her mother, overnight in a darkened waiting room, not knowing if I was going to survive the emergency surgery.
That night was, and still is, the only time I honestly thought I was going to die. Up until then, I thought I had come to terms with death, that I’d be OK with it. That night made me a liar.
Obviously, though, I didn’t die, and, in fact, I made it into a medical paper for not just living through, but spitting in the face of – and spitting up – previously accepted amounts of blood loss. Seriously, don’t underestimate contempt as a survival tactic.
Monica and I spent seven long, long, LONG months like that, in and out of the hospital, dealing with new and ever-changing issues, struggling not to go crazy, and confusing the hell out of some of the finest medical minds in America.
Then, one night in late August – the 26th, a year ago yesterday – we got a call. They had found a donor and surgery was set for the next evening, the 27th. Everything started speeding up again. We drove to the hospital. I was admitted. We waited for hours that felt like minutes. I was brought into the operating room. Kansas came on the radio. And the next thing I know I’m swimming up from out of nothing and into a three day drug-fueled haze.
I don’t remember most of that time and I’m told that’s for the best. I stopped breathing at one point. I had to be restrained at another. They were, suffice it to day, not my finest moments.
Eventually, though, I was coherent again, and the rush was on to get me out of the hospital and on my feet. Literally. I had to relearn how to walk, get dressed, take a shit. It was a crash course in what to do with working lungs, something my body had never had. I guess it passed, because soon enough I was given a literal bucket of new prescriptions and shown the sliding doors.
It took some time getting back to even the basic level of a functional human being. I had more energy than ever, but no strength, no stamina. My head was clouded and my insides were reeling from all the new drugs. Dosages were being switched daily. I felt invincible but was as fragile as glass.
Everything was a struggle for those first few weeks – maybe months – and then, one day, it just wasn’t.
This isn’t to say that everything was suddenly perfect. I’m still not one hundred percent comfortable in my new skin. I’m still perpetually on the edge of an existential crisis, unsure of what to do with a life I didn’t know I’d have. I’m still taking handfuls of drugs all day.
The transplant wasn’t a cure. I simply traded one set of health issues for some new ones. I’m allergic to turtles now, for one thing. I apparently have to watch my weight. And even now, a year out, while I feel better than I have for as far back as I can remember, I’m still a good twenty percent behind most adults on that standardized breathing test. I probably always will be.
But that quarter mile…
That sure as hell isn’t a problem anymore.