I will not remain silent.

Post-transplant day #310.  I will not be silent.

This last month has been unusually hard on the cystic fibrosis community, with a high number of deaths of both pre- and post-transplant cystics, and the death of the wife of the Cystic Fibrosis Foundation's COO. In response, there is currently a 65-hour silence going on in the CF community, with many of us abstaining from social media for that time, I think in an effort to get the world to see what it's like when so many voices fall silent.  But as Stalin said, "When one person dies, it's a tragedy; when a million die, it's a statistic."  So it would be if we all fell to the scythe at once. So I am not participating. 

I will not be silent.  I will not let my voice be suppressed, I will not let my voice be drowned out, I will not let my words be overrun by the blatherings of people whose most worrisome concerns are whether the potholes get filled or the trains come on time.  I will not stop talking about my cystic fibrosis, nor about other people's CF, as they choose to share it.  I will not keep my thoughts unvoiced when doing so means giving an easy rest to those who otherwise will not care.  In this society, with so many bits of minutia crowding each person's attention all day long, it is not just that my voice that can raise an important matter to the light, but can educate the unknowing, bring passion to the vapid, elucidate my fellow cystics' struggles, and, yes, even glorify our small achievements.

Most importantly, my voice gives some life to the dead.

Four days ago, another CF friend of mine, one I've known longer than average, passed away.  Brittany Wood was the same kind of CF Warrior we all inevitably become, fighting this disease tooth and nail until, sadly, it finally claimed her, casting her husband adrift.  Just days before her, Kenna Taylor, just a kid.  Why would I be silent about their deaths, when I mourn them as I mourn my own family??

And not only do I speak, but I don't just speak in the direction of those who are primed and eager to listen, my fellow CF Warriors.  Rather, I write and post so that YOU, my NON-CF friends and followers can live with me ... for a heartbeat. 

I speak so that you will feel what I feel...
I speak so that you will experience my distress.
I speak so that you will feel the rush of my endorphins.
I speak so that you will taste the same salty sweat from exertion.
I speak so that you will hear the same music I do.
I speak so that you will tear your hair with grief as I do.
I speak so that you will love the same way and the same people I have loved.
...I speak so that you will understand the world as a cystic does.

Today, Manda Thom passed away after a long, difficult battle.  I am devastated. She was 17 and had just gotten her new lungs less than two weeks ago.  I don't know what went wrong, but I do know this should not happen!  So how am I, one of the voices she leaves behind, expected to remain quiet in this sixty-five hours of silence??  The dead will fill that silence quite well, with no help from us.

Tonight, I am reminded of the need to speak and the need to do so regularly, forcefully, and both detail and volume if necessary.  I am reminded that while a movement of inaction, such as a boycott or sit-in, can have impact, it can only have impact if that movement has a voice to explain it.  Maybe I have missed the point of the Sixty-Five Hours of Silence; perhaps someone can explain it to me....in...another 35 hours.  Meanwhile....

I will not remain silent.

Catching The Bus

Post-transplant day 300.  Catching the bus.

Yesterday, on my two hundred ninety ninth day after my transplant, I went on my longest run in several months - a mere 2.25 miles.  My legs were jelly after a mile and a half and my blood sugar was running low - a problem I have a lot these days.  Once again, it came back to me that recovering fully from such a surgery takes far longer than I'd anticipated, and I guess I'm a bit older than I was last time I trained for a race.  I turned off RunKeeper, sat down for a bit, and walked the rest of the way home.

My route took me past several bus stops.  Some of them had whole families waiting there and it was clear they'd been waiting quite some time.  I got to thinking about those bus stops and the families.... just waiting.  There is little doubt the bus will eventually come, but perhaps some will give up and find another way to go where they're going.  Perhaps some will just give up and just stay home.  Or maybe the bus really isn't coming. It felt uncomfortably familiar.

It seems to me that the road to transplant is very much like waiting for a bus, but a bus for which you have no reliable schedule and you can't actually be sure it will come at all.  If it does, it can carry you on, possibly for a long, long time.  Nobody knows what distance your ticket is worth.  For me, I had to fully switch buslines!  Some of my friends nearly missed their bus.  Others, like Heather James, are still waiting and no one has any idea when her bus will come.

And still others won't be getting on the bus at all.  For one reason or another, the bus doesn't stop at their stop, or worse yet doesn't open its doors.  Getting confused by this metaphor?  Sorry.  What I am saying is that for some people transplant is not an option.  I suppose for a few that's by choice, but for almost every person who has been denied this life-saving treatment, it is mostly the doctors making this choice for them.

Friend Kenna Taylor is one of them.  I don't know the exact reasons why doctors have turned her down, but at a mere 17 years old, she has been sent home on hospice care - sent home to die.  And as of right now, she's back in the ICU.  I believe they will make her comfortable, but the stop for transplant is not on her ticket.  And I am emotionally panicked.  I just want to grab the driver or the conductor by the lapels and scream at them - WHY AREN'T YOU STOPPING FOR HER??

Who are these men and women who make the life and death calls?  What gives these mysterious conductors of the night the right to refuse to punch your ticket?  Oh, sure - years of schooling and experience; yeah I get it.  Nobody else is qualified to determine whether a candidate is a good transplant risk or not.

But here's the deal: the system is rotten.  It doesn't reward hospitals for number of lives saved, but rather penalizes them should there be too many patient deaths.  It penalizes by dropping their rankings in nationally published lists.  For instance, Duke is the nation's top transplant center, according to US News and World Report.  The system further penalizes, if it has to, by pulling the hospital's certification as a transplant center.  And so hospitals shy away from patients culturing B Cepacia, or who have multiple organ problems, or anything else that cause the pulmonologists or surgeons to believe the patient won't survive.  My friend Kyle O'Neil was a B. Cepacia patient.  By the time he found a center that would take him, he was way too sick and simply didn't survive the wait for lungs.  He passed away a little more than a year ago.  The hospitals near him - arguably the better hospitals - just suggested he look elsewhere and sent him home to die, just like they have with Kenna.

But shouldn't that choice be solely and wholly in the hands of the patient??  If I culture B. Cepacia, yes there's a possibility I won't survive the transplant.  But there's a possibility I will!  The few  hospitals that will do B Cepacia patients have hundreds of success stories.  Why doesn't the system recognize that?  Give me the choice to either go home and die, or at least TRY before I die.

I know....there's also the bald fact of a lack of organs.  There aren't enough to go around, even factoring in high-risk lungs.  And so, again, the doctors are forced into making choices.  Who gets to get on the bus?  Who gets a seat?  I had a seat saved for Kenna....and I really thought Kyle was gonna get one too.

Tonight, I am reminded of how very lucky I am; not just to have lived 300 days after transplant, but to have gotten one at all.  And I am terrified that should I need a second one, the doctors will find something that makes them shake their heads, tell me I'm not a good candidate, and refuse to open the bus doors.  But that day is hopefully a long, long way off.  In the meantime, I take good care of myself, get my exercise, and try not to obsess over the unanswerable question: why me, and not them?

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.