August 10, 2015


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.