April 24, 2015


Post-transplant day #500.  100%

I had a great checkup yesterday, 499 days after my transplant.  Several tests and several doctor consults.  The upshot is that I haven't been this healthy in many years.  My PFTs, the OFFICIAL ones, not the ones off my SpiroPD, have significantly improved: I'm at 96% FEV1 and 96% FVC.  I am so close to 100% on the numbers that it doesn't even matter.  Functionally, I'm there.  100% operational. Green lights across the board. Sure, it could all come crashing down around my ears in a week, a month, a year; it's a constant, but managed, risk. That's transplant life.

On the day-to-day level, 100% means I can work efficiently throughout the day, moving from one task to another, without the huge amounts of rest I used to require between every task, even mental ones.  It means I have energy enough at the end of the day to go to the climbing gym for an hour or go jogging for 30 minutes.  It means I have enough energy and strength to break in my new motorcycle with a 1500 mile trip.  It means that while I'm in the Triangle dealing with medical stuff, I still have the time and energy to give my girlfriend her due attention, go out and catch up with friends, take my Mom to an appointment, work on a refinance, and start a light plot for the next play I'm lighting.  All while living out of a T-bag.

What 100% means is that I can once again juggle all that I need to.  It's delicious.  I hope it lasts.

#500 has turned out to be memorable and special without forcing it, beginning with a long ride up to Winston-Salem last night (with April​ and Karen​ leading in April's car) to meet my friends Greg Williams​ and Alice Neff​.  We ate at Bib's BBQ - an adventure in itself - and talked over old transplant topics and where to go from here.  As a founding member of the LRLR, this year's ride is the next Big Thing on my list.

This morning started with phone calls and texts at 8 in the morning and hasn't let up.  But I got to start things off right with a nice breakfast at one of my favorite breakfast places, Another Broken Egg, with sweetie and my friends Pete​ and Jen Eisenmann​.  They have just finished moving to this area in advance of Jen's inevitable final decline and lung transplant.  It gives her time to focus on her health (she's already back to using oxygen part time instead of full time), get to know the various CF and transplant programs in the area, and make a new home in a very hospital part of the country.  I've broken bread with Jen before, but this was my first time meeting Pete, who has been an avid supporter of my athletic efforts over the years.  Lots of coffee and lots of laughter.  Quite the morning!

A couple hours later and I was opening the door to a mortgage closer, a notary public who makes sure everything gets signed.  I think I wrote the long form of my name a couple hundred times.  But it is done.  I am refinanced at a lower rate and saving hundreds on each month's payment.  It takes being at 100% to even start a refinance, much less hang on through one.

To cap off my day, sweetie and I rode over to Lowe's to have a copy of a key made.  That's right: April got on the back of my bike, suitably attired in my leather jacket, full-face helmet, and gloves. Coming back, she tried my half-helmet and liked it more. This outing was her first time ever on a motorcycle.  She's already looking at changes I could make to increase her comfort! I think the bug has gotten suitably under her skin.

So it is that on day #500, I felt the arms of my love wrapped around my waist as we rumbled through the pleasant outskirts of Raleigh. It's all I ever wanted, really. 

Is the long nightmare over?  While struggling along and enduring transplant, I often had to remind myself that "this too shall pass."  Today, with spring's bright dawns and a bright future ahead of me, I am reminded that ... well, it has.  And while this pleasant state may also change, will change....must inevitably change, it's worth breathing in the air and turning my face to the sun while I have the chance.

April 15, 2015

Breathe Easy

Post transplant day #491.  Breathing easy.

Today, April 15th, is a momentous day, and will always be so.  In the national brain, not only is it the ever-grim Tax Day, but it is also the much more grim anniversary of the Boston bombings.  In one week, Dzhokar Tsarnaev will be sentenced, most likely to death.  In the national mind, this is justice.  (As a side note, I find it exquisitely ironic that his brother, Tamerlan, seemingly the mastermind behind the bombings, was killed not by police bullets, but because his own brother RAN OVER HIM in an attempt to escape.  Not once, but TWICE.  Thanks, bro.)

But in my brain, April 15th will forever be the anniversary of one of my dear friends and cysters, Ellie Alexandra Levy​, getting her second double-lung transplant.  It was the beginning of a period of time in which, after extensive recovery, Ellie finally breathed easily, without assistance, without oxygen, without coughing.  And I can tell you from experience, it's those first weeks free of all that, able to take deep breaths and laugh with abandon, that feel like the greatest mitzvah our donor could do us.  Extended life is wonderful, but just finally being able to draw breath without effort is in some qualitative way the more precious gift.

In the CF community, when asked what it's like, we sometimes challenge the questioner to breathe through a straw for several minutes, until they can't take it anymore.  That's like the restriction we experience daily and forever -- until a day like today.  Until a hospital says yes, a donor's family says yes, a recipient says yes please.  All the struggle to breathe and stay alive gathers up into a single moment in a pre-op bay, like a firework waiting to explode, until the word comes back that the lungs are good.  Then a beautiful chrysanthemum of fire blooms, sending nurses and doctors scuttling every which way, and the chrysanthemum expands and expands over time through surgery, ICU, stepdown, recovery, and finally -- as the chrysanthemum fades from the night sky leaving it as clean as it was before -- a life regained with effortless respiration.

Today, as I sit here sipping coffee and taking deep and regular breaths, my chrysanthemum long since seen and applauded, confident that my exercise will be harder on my legs than lungs, and once again able to fully enjoy my life, I am reminded that Breathe Easy is not just a send-off salutation for the dead.  It is a wish for the best possible outcomes, as simply and sincerely said as Happy New Year to the living, whether respirationally challenged or not.  For Ellie, and Heather​ and Jerry​ and Katie​ and Piper​ and April​ and Michael​ and Eryne and Jen​ and Denise​ and all of us pre and post, living or no, on April 15th my day-long prayer is: Breathe Easy.

April 4, 2015

Waking the dead

Post-transplant day #480.  Waking The Dead

Coming back to life has been a long haul.  It is more than rehabbing the body; it also involves rehabbing one's life. 

As I slowly deteriorated in the years before transplant, I had to cease activities that I loved, and felt like I was dying piece by piece; my corporeal death would merely be the last death of many.  First I couldn't climb anymore.  Then I couldn't motorcycle.  I stopped writing for Thunder Press. I quit teaching at FIT. Then running became impossible, and finally cycling.  It could have been worse: I could have gotten so weak that I couldn't walk anywhere or climb any stairs. 

The transplant itself, while not uncomplicated, is a fairly straightforward event.  A sort of K/T Boundary separating the Before from the After with a traumatic and (systemically) calamitous event. 

Once the damage is done, the body slowly comes back to life and the mind follows.  I have remarked in this journal before on some of the major milestones: My first night of good sleep, my first run, my first miles of cycling.  Then, back in NY, my return to work, both design and tutoring; I picked up climbing again a couple of months ago, reveling in an unexpected strength and endurance, even if it's obvious I'm out of practice.

Last summer, I borrowed a buddy's Sportster 883 to participate in the Long Reach Long Riders ride.  It was a brief return to motorcycling.  Sort of a litmus test as to whether this was still for me.  Was I still interested?  Could I still handle the rigors of biking?  It was obvious I was far weaker than I used to be and I think that contributed to my parking lot drop that caused my ankle injury.

But now, after another nine months of steadily growing stronger, I have brought home a new motorcycle, a Harley Davidson XL1200T.   I feel I'm once again a biker.

Some of the neighbors don't like Harleys.  They think they're unnecessarily loud.  Strictly speaking, that's not true - from the factory they are fairly well muffled and have a comforting rumble.  But most people change pipes or at least the mufflers in a bid for more power.  They change the air cleaner and the EFI mapping, too; altogether a change known as the Stage I conversion.  These pipes tend to be ...  more open-throated. A wise biker chooses a pair of mufflers with a balance of power and silencing.  I hope I chose well.  I'm not trying to be a bad neighbor, honestly.

Now, my first bike had a name, which she earned after my first and only accident on that bike.  "Roxie."  (After the murderess Roxie Hart, of course.)  Many people name their vehicles.  Heck even my bicycles have names, which they whispered to me after a period of time.

I wasn't going to name this bike yet.  Wanted to break her in and see what bubbled up.  But something happened two days ago, when I signed the final paperwork at the dealership.  I got to talking to my dealer about why I'd been gone from biking for so long and another dealer overheard me talking about my transplant.  He asked what organs I'd gotten and said double lungs.  He then asked a question most people don't usually get around to asking at Question #2:  what was the underlying condition?  I told him about my CF.  Shortly after he brought a young saleswoman over from the merchandise side of the store, who introduced herself as Katie.  She is young, owns her own Sportster...and has CF!  We stood a respectable distance apart.  She sees my old CF doc.  And she is far, far from transplant.  She could be my age or older before she'll need one.

But just meeting this young woman made me aware of the nerve-like connections throughout our two communities, CF and bikers. It is bucket-list material for a lot of transplanted CFers to get a Harley or get back on their old ones.  And Katie and I had both been friends of Brian Jonson, who founded the CF Riders.  Perhaps it is our burden to take up - we who are living on after him.  We have a lot more to talk about in the coming months, but something about her reminded me of so many of the other fresh-faced CF youths.  Those who you just want to reach out and hug and say "I'm so thankful you're alive!"

On the way home, I thought about that encounter and about the CFers I'd never be able to reach out and hug again.  I looked in my little bag of goodies the dealership had given me and there was an angel's bell, given to me by my dealer. (You can't buy these for yourself.)  "I'll certainly need an angel watching over me as I enter this next phase of life," I thought.  And it became clear I had to name her after a CFer.  The name of my new bike had suggested itself to me.

But dare I name a bike after a dead woman?  I mean it as token of respect; a pledge to never forget.  Some people get vinyl lettering put on their cars, trucks, or bikes for deceased family members, or get friends portraits airbrushed on their tanks or tattooed onto their skin.  Isn't naming your bike for that person as basic a way of ensuring their immortality as any of those other rituals?  After all, we name our KIDS after dead relatives; this could hardly be more creepy.  Could it?  Fuck it; I stopped worrying about it.

And so it is that yesterday afternoon I received delivery of my new baby, Ellie.  This afternoon, Ellie and I will go for a long spin together, given decent weather.  We will start to get to know each other.  And if there are angels, I hope the real Ellie will be riding along, with her arms wrapped around my waist for safety.

Tonight I am reminded of the religion of the road; the hundred little practices and superstitions that bikers follow, hoping to ward off bad luck and bad weather.  The blessing of the bikes. The prayer circle many groups engage in each morning before hitting the road.  And I promise, to my donor, my friends, and my family, that my most reverential prayer for blessings and my most sincere promise to drive my safest will be encompassed each time I breathe my bike's name:  "Ellie..."