A Prayer Request

Post-tx day #278.  A prayer request.

I am conflicted.  I am not religious and don't believe in God, but I've seen for myself the power of prayer; not just comforting the dying, but in strengthening the patient's will to live, her will to fight.  And I welcome people's prayers for me - it's the best expression of their love. 

Of course, I often think over Pascal's Wager.  In particular, I ponder how the existence of a god is or isn't supported by evidence around me.  As Pascal wrote, "If I saw no signs of a divinity, I would fix myself in denial. If I saw everywhere the marks of a Creator, I would repose peacefully in faith. But seeing too much to deny Him, and too little to assure me, I am in a pitiful state, and I would wish a hundred times that if a god sustains nature it would reveal Him without ambiguity." 

Which leads me to ask, if God exists, does he listen to the prayers of someone who doesn't believe in his existence?  And you may ask, why would a man who doesn't believe in God ever pray to him?  Well, for the simple two reasons stated above.  One, I can't ever know for certain that God doesn't exist; and two prayer has positive and measurable outcomes.

All of this is a preamble to reaching out to you among my friends who do believe and who do pray, for I come to you a humble sinner and ask you to pray with me for the lives of two young women whom CF is killing.  I ask that you pray for Eryne Shan, who is living a hell so mortifying that I moved five hundred miles (and would have moved around the world) to avoid it myself - vented, sedated, on ECMO, with precious little time left, and just waiting for lungs to come.  Emily Gorsky - you survived this - maybe your prayers will be heard.  I also ask you to pray for young Kenna Taylor, who was told by her doctor to get her affairs in order and has opted to go home to die, rather than die in a hospital.

Today I am reminded of my impotence in the face of time, the movement of the Universe, and existential questions. My heart is breaking for these two young women; yet all I can do is pray to a god I don't believe exists that if he DOES happen to exist, could he please show mercy?

The Shock of Reality

Post-transplant, day 274, 9 months.   The shock of reality.

Holding my head in my hands, I thought to myself, "This is never going to end, is it?  I am a forever patient."  It was, in that moment, a horrible thought. 

I knew this already though.  Pre-transplant, I was told time and again by transplanted CF warriors that transplant isn't a cure, that it is trading one disease for another.  I knew it and accepted it, intellectually, just as I knew I'd need CF care my entire life, before my lungs went bad.  But these last few months away from Durham, leading an almost normal life again, I had been lulled into a false security.  My view of my own health included a false facade of the kind of invulnerability that good health lends a person.  I'd worked to build good sanitary habits so as to avoid picking up germs from other people and had, so far, not gotten sick.

The first hint that this newfound health was not what I thought it was came on my motorcycle trip.  It was far harder to manhandle the bike then I remembered, and my best friend even commented that I am weaker than before.  And then, not too long after that, I noticed my cough increasing and a slight drop in my home PFTs.  I had to call my coordinator and start oral antibiotics.

The facade took a big hit when I was admitted to the hospital.  In a few short hours, I went from feeling great to feeling like I might die that very night.  I went from being mobile and catheter-free, to having two peripheral IVs, one central line, and a Foley in me and frankly immobilized in a hospital bed in ICU.  My bronch earlier that day had stirred up infection.  I went septic and my blood pressure plummeted.

My ICU stay was short, but then I spent the next six days on 7800.  The doctors were trying to stabilize my blood pressure, which was hitting both extremes every day, and figure out the right antibiotic cocktail.  It was enough time that they got preliminary results on the cultures taken during the bronch and also got the pathology report back: no rejection!  That was a welcome bit of good news.  I ended up staying over the Labor Day weekend primarily to wait for the IR docs to get back so I could get a PICC or Hickman.  When I found out on Friday that I wasn't going to be released, and that my central line wouldn't come out 'til Tuesday at least, I just groaned and slumped back in my chair.  Although my good friend Ellie Levy was also in, just two doors away, and we entertained each other, I just didn't want to be there.  Nobody wants to be in the hospital. 

I've been in the hospital before, and for longer.  But what got me about this was that this is an admission I just wasn't expecting.  And for that, it was quite upsetting.  I suppose I should be thankful it was only six days and that my problems were handily treated.  But as so many of my transplanted friends can affirm, admissions are a reversal of fortune that are sometimes harder mentally than they are physically.

And so I spent my nine-month lungiversary on three antibiotics, delivered three different ways.  Cipro orally, tobramycin by inhalation, and cefepime by IV.  These are old CF exacerbation treatment tactics.  I knew... I KNEW... that at some point, these treatments would be needed.  I had just hoped to put it off longer.  And yet...as in the days pre-transplant, I do my treatments and then go to work.  In this beautiful blue September, I continue to balance work, social, and medical life, just as I always have...

Today, I am reminded that I am in a race which has no finish line.  And the best way to survive it, is to take it slow and steady, maintain my discipline, adapt as needed, keep on keepin' on. 

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."