Forward

Post-transplant day 611.  Forward.

I made a new friend last week at my local gas-station.  Now I know most stories that begin like that don’t usually end well — usually with waking up in a bathtub filled with ice in a dingy hotel and a freshly MIA kidney — but this one is only in its first chapter.  I kinda hope the story ends up being dull, routine, and anticlimactic, for my friend’s sake. 

So before I elaborate further…let me back up a bit to where my thoughts have been since getting back to 100%.

My rank and status in the field of combat may have changed, but the battle rages on.  Today, at 20 months out, I am in some ways healthier than I’ve been in my entire life, but in others have a lot of catching up to do to 33-year-old me, the one that ran the Flying Pig.  I can keep weight on and good lung function (“lungction”?) up, but I struggle to get my legs under me.  Such is the nature of getting older I guess.

But in this suspect maturity, and in moving on from the biggest crisis of my life, I find myself wanting to make my life count for something more than average.  And volunteerism is the way to do it; at least for now, for when I don’t have time to go on multi-week epic adventures. I’ve gone through volunteer training with Live On NY, lower-NY-state’s organ procurement organization.  These entities, the OPO’s, are the official state-by-state registries and organ clearinghouses brought into being along with the federal oversight board, OPTN (Organ Procurement and Transplant Network) via the National Organ Transplant Act in 1984.  I am officially part of the enormous machine of people, laws, history, cause, and effect that saved my life a mere 611 days ago. 

April and I have already been out manning a table at an event.  We didn’t get many people to sign up, but we were working with an historically difficult demographic to get signed up and I think there were a few we reached who now will more readily sign up when approached again.  My next gig will probably be a four-hour shift at the DMV.  Better find my #1400 t-shirt!

But this kind of volunteerism is somewhat impersonal.  Though April and I can readily help strangers put a face and a name to organ donation by telling our stories, we nevertheless remain strangers.  But there are people out there who are not such strangers — and we must stick together.  I would like to tell you about two people I know whom I’ve been talking with; people who need new lungs and whom I might be able to help.  Owing to general traditions of medical privacy, I won’t use their real names until and unless they give me permission.  They’ll know who they are when they read this. :)

The first is a friend of mine since we met years ago at a fundraiser she used to throw annually for the Cystic Fibrosis Foundation.  She was a powerhouse then.  Today, she is looking a bit deflated and is very sick.  She is in the process of getting listed at NY Presbyterian for a double-lung transplant (of course).  Earlier this year, when we began talking on Facebook and then over the phone about her status, it dawned on me that she doesn’t have the kind of support I had, and knowing what I do about NYP’s requirements, if she has any hope of getting listed, she needs Support.  At least two, maybe three people who will commit to staying in New York once she’s listed and waiting and to providing care before, during, and after transplant.  I’ve seen for myself how draining this role can be, having watched dozens of mothers, fathers, wives, husbands, and children shepherd their loved ones through transplant. 

When we came to that point in our conversation…parents? sister?  boyfriend? all unsuitable support for various reasons…. well, it took me less than a heartbeat to offer my full and unconditional support.  I’ll do everything.  I don’t want to see her turned down just because she doesn’t have stabile enough Support - how absurd would that be?  And yet…I’ve seen it happen.  And so, it’s my turn to cook, clean, chauffer, change dressings and IVs - whatever’s clever, man.

And to be completely honest, I do this knowing that I put myself at some risk.  She does have CF, after all.  But we both wear masks and use hand sanitizer liberally, etc.  She has another support person, but that lovely woman lives near the hospital, not out here in Brooklyn.  So she works on getting accepted, and we all will work on laying plans and contingency plans.  In the meantime, she knows she can call on me anytime, 24/7, for anything.  I’ve walked far more than a mile in her shoes; I don’t want her to experience any more hardship than necessary.


We've already been to her first meet-and-greet with her assigned transplant pulmonologist.  It was a long and informative day, to say the least.

The other woman is my new gas-station friend.  I know, I know…just…bear with me.  So I turned around from getting my change after purchasing some Gatorade and I see a woman waiting for the ATM with her kid.  She’s on oxygen.  I can’t resist striking up a conversation in the most awkward way possible.  I sidle towards her and she asks if I’m waiting for the ATM and “No, I’m waiting to talk to you, actually” just dropped out of my yapper.  So as I’m mentally patting myself on the back for my suave and subtle introduction, something clicked for her faster than for me and she asked if that was my car parked outside.  She said she’d noticed the Donate Life plates before, since she lives in the area (quite close as it turns out) and was I the person with the lung transplant?  At the same time, I was asking her, “is that LIQUID oxygen you’ve got there??” (Unbelievably, because the companies won’t take new liquid O2 orders - only for existing customers.) Yeah, we had a few things to talk about.  She’s been on O2 for five years - and may have another five years before she finally, really needs her transplant.  Despite that, she is in the program at NYP, attends the meetings, etc.  She talked about the difficulty of always having someone attend with her - and of course I gave her my card and said she could call on my anytime.  I’d be happy to help her fulfill her requirements.  As with friend #1, I am more than happy to lay out time and energy for friend #2.  People did for me, after all.

We chatted a LONG time.  I think the bodega owner was getting sick of us.  But eventually I had to get on with my day.  I hope we have a chance to chat again soon.

So is this a “Pay it forward” thing?  Or just paying it back?  I don’t know.  I hope that my efforts bring honor to my donor’s spirit and maybe a little peace to his family; that the coffers of human kindness that have sustained me and the cocoons of love that have protected me are refilled, repaired, and ready to restore another soul. 

Today, at 20 months, I am reminded that while I can never fulfill my debt to my donor, I CAN fulfill my obligations to my fellow humans - *explicitly because* my donor made it so. 

100%

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.

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.