A soft lightning bolt

Post-transplant day #232

One year ago today, I was hit by a soft lightning bolt.

I'd been on Columbia's transplant list for 9 months already and had slowly come to the realization that people with Lung Allocation Scores in their 30s or 40s had zero chance of getting transplanted here. There were simply too many patients and, of course, not enough organs. Add to that the story of my dear friend Emily Gorsky, who lay dying in the ICU at the time, on full life support and yet STILL waiting for lungs, and I was getting downright scared. 

But on July 30th, 2013, I had an appointment with Dr Emily DiMango, my CF physician at Columbia. She had first referred me for transplant and now had called me in on thin pretense for a checkup. What she really wanted was to tell me to start looking elsewhere. She suggested Barnes, Cleveland, and Duke. I knew of the programs at Barnes (where my friend Missy Sedam got transplanted) and Cleveland, but Duke had somehow eluded my radar.

Fear doesn't come easily to me, but I was on a foundering ship and I knew it. And now the person who had been the primary consigliere of my health for the last ten years was urging me to abandon ship, even though it meant me leaving her hospital. It was like getting hit by lighting, but softly. I didn't need a clearer sign. It was time to change ships, change berths, change captains.

To sum up the story, my mother and I would go to a nice dinner two nights later and go over the pros and cons of every option. We chose Duke and we have no regrets. In fact, I feel a little stupid it took as long as it did for me to consider Duke, knowing what I know now. I believe I was the first of the Columbia patients to be referred to Duke, though there may have been one or two before me. What is certain is that once Denise, Piper, and myself all arrived and the benefits started being realized and relayed back to Columbia, more and more referrals came into Duke from there, not just from Dr DiMango, but also from Dr Arcasoy, head of Columbia's transplant program, himself!

Today I am reminded of the power and grace and compassion good doctors embody. Dr. Emily DiMango is one of the best physicians I've ever had and I feel lucky to have ever known her.

Support from afar

Post-transplant day 207.  Support from afar.

It was cosmic somehow, this moment in a bubble with this small family.  Cosmic because my most vital life experience led me here, now, to talk to this young mother and father - and no other circumstances would have brought us together.  And if certain things had changed anytime in the last 12 years - we would have missed it.

Let me back up to 2002. Shortly after the WTC attack, I was working for NYU and my soul was dying.  I was a man without a hobby.  I worked, ate, slept, and worked more.  So I bought a motorcycle I dubbed Roxie (after Roxanne Heart, not Rocinante, if you must know), and thus began an 8-year adventure that would add new dimensions to my world, bring me lifelong friends, and challenge me in ways I could never have foreseen.

But as I grew sicker, my coughing led to rare occurrences of cough syncope, a side effect I determined was too dangerous and incompatible with safely riding a motorcycle.  With a heavy heart, I sold Roxie.  And as I grew sicker yet, and went on oxygen, I turned away from the world of motorcycling completely, packing away my gear out of sight, unsubscribing from email lists.  Something inside me went cold and still.  And shrank.

But transplant has a way of restoring life, not just physically, but also rejuvenating social contacts, adding new relationships, and opening the doors to exploring all those things you wanted to do but .... just couldn't.

So today, for the first time in over three years, I donned my helmet and jacket, sat in the saddle of a Harley Sportster, flipped the run button to ON, and hit the starter.  The rumble the engine sent through me pervaded more than my body.  And I felt like I could finally take that big, deep breath transplant promised.

My first test as to whether I "still have it" was getting the bike off my buddy's concrete patio and down his dirt, gravel, (and mud) driveway.  Not only was I calling into play rusty skills, but at the same time getting familiar with a different bike - albeit one of the same model as Roxie.  And navigating an unpaved surface is a higher-order skill any day.  I'm pleased that I made it to blacktop with nary a mishap.

The first few miles were of Maryland backroad leading to the interstate, and as I pulled out onto the county highway and clicked up through the gears, I felt the wind rush into my visor, into my lungs, and into my being.  I got the biker wave from guys heading the other way.  With the gorgeous weather, I wasn't surprised to see so many people out on their bikes, but the instant familiarity and friendliness of other bikers to this oldie-cum-newbie somehow took me by surprise.  And I felt something old and withered (and dead I thought) suddenly spring up with a little green. Shortly before the intersection with I-95, I had to pull over.  Must have been some dust in the air.  I had to clear my eyes.

So what's the first thing a good biker does with an unfamiliar bike? He ascertains his fuel capacity and range.  To do that, I needed to top off with gas and set the trip odometer to zero.  After sixteen exhilarating miles on the highway, I pulled into Maryland House, topped off, and then on a whim, decided to look for some chocolate milk.

The young man and woman sitting in the middle of the main aisle had their backs to me as I approached, but I couldn't help but see the green and silver and the smoothly curving sides:  an E-tank.  I supposed the man was on oxygen for a good reason, but moved swiftly past trying to find the chocolate milk. "Poor fucker," I thought. "Maybe I'll ask what disease he's got; maybe he has CF too?"  I came up empty on the choco, and as I returned, I got a better look.  The oxygen cord ran to a nasal cannula.  A very small cannula, which was taped to....a baby.  I was shocked.  Outside of a neo-natal ICU, I haven't seen a baby on O2.  Mommy was trying to keep the baby from fussing while dad was messing with some benadryl and some syringes.

I stopped.  I think I failed to introduce myself, and was certainly too direct in my questions.  So here's some biker asking this somewhat nervous looking family why their baby is on oxygen.  The mom, having just explained this to a couple of other women who had been cooing at the baby, explained to me that "his lungs are bad".  I crouched to meet her eye level and said conspiratorialy, "I was on oxygen recently, too, for about 18 months."

"And you don't need it now?"

I smiled broadly.  "No, ma'am.  I got a double lung transplant at Duke."  Mommy's eyes popped a little when she heard that and it also got Daddy's attention as well.

"The doctors have spoken of getting him a lung transplant," the mom said.  "It's possible, they said."

Knowing nothing of pediatric transplant, much less neonatal lung transplantation, I just nodded dumbly.  My attention switched to Daddy, who was struggling with syringes.  "Ah, the ol' g-tube." I commented.  That got a smile.  "You know what this is?  Have you had one?"  I had to admit I'd managed to avoid it, but was familiar with g-tubes because of my friends.  The infant was wiggling a lot and Daddy was having to play chase with the end of the tube.  I learned the little guy has pulmonary hypertension.

I suppose I could have stayed and talked to them of transplant, but I seriously doubt any of my experience, or that of my friends, will translate into what they will go through.  Now that I've looked it up, neonatal lung transplantation is all but unheard of.  It's been done a couple of times, but the procedure is still...well, in its infancy, shall we say?  (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1590489/) The odds aren't good for this kid.  I guess I already knew that, and as I stood up I simply wished all three of them the very best of luck.

The rest of my trip home was uneventful, though my mind mulled over this moment.  So many factors, starting from twelve years ago involving biking and transplant, leading up to the moment of a strange and unusual craving for chocolate milk led to this random run-in.  There were more things unsaid than said in those few moments.  The parents looking at me with weariness at first, then after I revealed I'm a survivor of lung disease, the look of ... desperate hope that filled their eyes.  Maybe this family sees a future for their son...

Today I am reminded that a little support from a long way out can mean more sometimes than the usual caregiving.  In a unique time of both need and renewed ability, my buddy offered up a whole motorcycle to help me jump start that aspect of my life.  For him, maybe a fairly simple act, but for me, it is sunshine and rain where I've had neither.  And, cosmically, in return, when a worried family sits down in a travel center to take care of their sick infant's needs, a stranger stops by just to say "I've been there -- and, you know, it could be OK."