September 14, 2014

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?

September 10, 2014

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 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.