Survivors and Heroes

Post-transplant day #685. Survivors and heroes.

There are just some days where I am absolutely humbled. Times when the face of true grace is revealed to me, when something divine is on display and if I pay attention, I'll learn something about what it means to be human. It happens in the people around me, when some occasion strips away the patinaed armour of life that usually hides people's true selves and I can see underneath -- and meet and come to know -- those individuals for whom "every man for himself" is an antithetical notion. This was one of those days.

LiveOnNY threw a luncheon to honor donor families; and they made sure there was a recipient at each table to represent our ranks, say thank you, and honor their nobility.  (And nobility IS the word - for they did the right thing at the hardest of times.  When your world is crumbling around you, saying “yes” can be monumentally difficult.)  And so I attended that luncheon, meeting many donor families, and in particular the five families that sat at my table.  

This was not a black tie affair, but a suit was appropriate; and it was held in one of the ballrooms of the New York Marriott Marquis Hotel in Times Square.  Many of these families traveled quite a distance to be here.  All of them were somewhat subdued and, I think, a little shocked at seeing so many other donor families, as well as getting to talk with so many representative recipients.  I can’t blame them - they had lived through a difficult, extremely stressful time of their lives during which each made the decision essentially in isolation to donate their loved ones’ organs.  Being approached in the hospital, during the final hours of a family members’ existence (once they’ve already been declared brain dead, that is) is a horrible time to have to make a decision that could potentially affect several other people’s lives - and yet that’s exactly what must happen, especially if that decision hasn’t been made and discussed long before any need for it.

One of the more interesting series of speeches of the afternoon was from two donor parents, Frank and Kelliie Cutinella.  You may remember their son Tom died after a fatal hit in football one year ago.  They were gracious and intelligent people.  And while we mourn the loss of a bright young life like Thomas’, we can all celebrate the lives saved by his organs - because this lives were standing on stage with them!  Three of the recipients were there, including a heart transplant, kidney transplant, and kidney/pancrease transplant (which is fairly rare).  I can not imagine a more graphic way of describing the direct benefit of the slogan “live life, then give life.”

The heart recipient, a vibrant young woman named Karen A. Hill, received Tom’s heart on October 23rd last year.  She made a great point about the relationship between the clouds and the silver linings of this existence.  "A world without disease and hardships would be a world without survivors and heroes.”  I hadn’t thought of it quite like that before.  

Also speaking this afternoon was an acquaintance I’d met shortly before I left Durham - Rosemary Hargaden.  It was as if she was my a mimic of my own inner thoughts, taking the prayers and dreams and gratefulness I feel from the world of the ethereal and making them concrete with words of thanks and illustrating what it means to be living again.  Personally pleasing to me was this sudden reunion with another NY-to-Duke CF double-lung recipient. There’s a small but steadily growing club of us.  A third one was there, too, though her name is slipping my mind right now.  But when I think of them, myself, Denise, Piper, Michael, and Jason, and the one orthodox guy who didn’t survive - I am so incredibly amazed with the graciousness of the New York doctors who may have lost our business, but did the right thing by referring us to Duke.

The afternoon ended with a medal presentation - each donor family received a gift box with medallions of appreciation.  My various families collectively lost two sons, two husbands, and a sister.  With a single exception, they all died of brain aneurisms, which makes me wonder if that’s the most common cause of death leading to organ transplant.  The one exception was one father’s son, one of twins, who at 17 was shot in the head.  This father seemed like he didn’t want to be there very much, but his sister (the boy’s aunt) very much did.  So I guess what helps one person grieve just makes it worse for another person.

I’d have liked to have a transplant doctor or surgeon speak - they’ve seen the vast amount of good transplant can do and rarely get to speak to or thank the donor families themselves!  They could also help deliver a message that needs to be stressed:  that though the hardest part is over, the journey as a donor family never ends.  You will always be an example of what it means to Do The Right Thing, true altruism in an age of true selfishness, and one of the best ways to honor your loved one is to push others to become registered donors, too.  For beating back the darkness is the task of all of us involved, flipping the story to the point where organs outnumber the need is the Olympus we must climb, yet can’t climb it individually.  It must be a team effort - donor families, recipients, doctors, and volunteers, all roped together.    

But perhaps this soapbox is best saved for another day.  I really just wanted to write to say thank you to the donor families - those who attended today and those who didn’t.  The families here in New York and the families in The Triangle, and the families all over the world.  

Today I was reminded that life goes on even after our passing, a life where our loved ones bravely soldier on, advocate for the next ones down the line, and almost without meaning to become survivors and heroes.


Post-transplant day #666.  Dis-Belief.

"I don't believe in organ donation."

I heard that from the rotund, grey-haired, well-dressed man in front me.  As a volunteer yesterday for LiveOnNY's state-wide Registration Day, I was helping man a table in the lobby of NYU Lutheran.  This man had come down with a companion who was at the moment engaged by another volunteer.  And while the woman was warming up to signing a donor registry card, the man was hanging back.  I caught his eye and asked him if he was a registered donor, or would like to register today perhaps?  And then that sentence dropped out of his mouth:  "I don't believe in organ donation."

Mentally, my jaw hit the floor.  I wanted to respond "Well, organ donation believes in you! It might save your life some day, asshole!"  But that kind of comeback doesn't help anything.  I pursued the issue a little bit, introducing myself as a recipient, noting the fact we wouldn't even be talking if it weren't for an unknown soul generously saying YES to this very request.  Well...I just couldn't get through to him.  Even his companion began to razz him a bit, but he stubbornly kept his distance and his silence.

Now, this man was not a patient.  He was not a janitor or security guard or an administrator or technician.  He was a doctor.  And he "doesn't believe in organ donation".

The only higher amount of disbelief I encountered yesterday was my own, when I heard him drop that little bomb.  All of us at the volunteer table were having a hard time not showing our reactions; incredulous to the last volunteer.  We've all done events before.  We've all been told "no" before, and in no uncertain terms.  Often quite bluntly.  But we can mentally write it off as a consequence of misinformation, fear, superstition, religious constraints, or cultural influence.

When confronted with a person who flat-out says "no", we're trained to follow up by asking what "concerns them" about organ donation, just to satisfy our curiosity, and maybe we could answer some questions they might have.  It is all very polite and positive.  But it is amazing how many people, even highly educated people, even medical professionals -- YES, EVEN DOCTORS -- hold misconceptions or irrational fears.  Often we can at least get our information leaflet into their hands and get them to expose their minds to the idea of it... but not this time.... not this time.

I quite disbelieved I'd heard him correctly at first.  Later, I couldn't quite believe our team had had that interaction at all. Was it a test? Was the man an actor and we volunteers were being throw a curve ball as some kind of in-the-field training?  I'd been through RA training in college and the simulations of serious college student problems we were trained with then felt much like what was happening at that moment!  Flabbergasted is a good word here.  And I felt betrayed.  The physicians are supposed to be on OUR side!  Not on the side of whatever phantasms and ignorance makes a person refuse to become an organ donor.

Earlier, we'd had a Reverend come through and he didn't seem to want to sign up, either.  His reservations may have been based in religion, I'm not quite sure.  Was his belief stopping him?  Had he simply not searched that part of his heart?  I could see a struggle between emotion and logic in his face as he took the info and promised to come back.  (We got a lot of that, actually, and really don't expect people will come back later.  After all, we all know the tactics for disengaging from an uncomfortable conversation, yes?)

But... just before we packed up to move to a different venue, the Reverend came back.  And he had filled out and signed the form!  I got the sense this was a breakthrough moment for him.  Yesterday, we actually changed someone's mind about organ donation; dissuaded him from whatever belief held him back.  We walked away from the day with 39 new registrants, contributing to over 1000 new registrants gathered that day by LiveOnNY, but that was maybe the most meaningful one.  Thus, the day was redeemed by one of our last sign-ups.

Yesterday was important in another way, too.  On October 6th, 2014, I used a bus analogy to talk about who does or doesn't get a transplant and the maddeningly arbitrary nature of it all.  As it happens, I showed the post to a fellow volunteer, Samantha, whose sister had unfortunately become a donor a year ago.  Her sister saved four people's lives because she was registered as an organ donor.  (But not even Samantha's story could sway some people, dammit.)

Anyway, I noted in that post that Kenna Taylor was denied transplant and was that day in ICU.  One year ago yesterday.  And then, one year ago today, I recorded in a Facebook post that Kenna had passed away.  (You've been gone a year, Kenna, and I think of you often.  You had a hell of a spirit.)  I also noted that Eryne Shan had received her transplant, so the day was mixed and bittersweet.  I was so thankful Eryne was finally on her way to health.  I didn't know yet - and nobody could have predicted - the complications that would beset her and eventually kill her.  I miss both of these ladies' presence in the CF internet world.  And I just can't believe it's been a year already.

Why do I volunteer for LiveOnNY, especially when it means a lost day's worth of income? Because I must. For all those who have been turned down for transplant because the one common thread in all the Gordian Knots of transplant is that there simply aren't enough donors! I must get out there, man the tables, speak to strangers, shake hands sometimes (and then sanitize), and repeat our stories over and over because... well because my animal mind tells me if there had been just one more donor registered and one more set of lungs used instead of thrown away, maybe Kenna would have been accepted into transplant and lived.

It would actually take a tripling or quadrupling of available organs for transplant centers to cease picking and choosing, but you can't tell your Id that.  The Ego knows the science, the Id doesn't believe in numbers and statistics.  It goes by the heart.  Unfortunately, it is my Id versus Mr Doesn't-Believe's id.  It is my Ego versus my Id. It is my Belief versus my Dis-Belief.

Today, I am reminded that I can't bring back Kenna Taylor or Kyle O'Neil.  As I told a reporter yesterday, 39 new registrants may seem like a drop in the bucket -- but a drop is measurable and each one increases the volume in the bucket.  And I believe if I get enough people signed up over the course of my remaining life, maybe I'll be directly instrumental in saving one more person's life who would otherwise die waiting.  Even just one more!


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.