The Accidental Exemplar

Post-transplant day 76; pulmonary rehab #37.

I did good today. Not just in a manner of having notched new benchmarks physically*, but also performed a mitzvah. And for once, I'm not going to be humble about it.

[ *I skipped the stationary bike today, instead doing 8 miles on Stoic on the American Tobacco Trail before rehab. That was a pretty nice workout! And then on the treadmill at rehab, using April as a timer, I was able to do jog repeats of a minimum of 90 seconds and one of them finally reached a two-minute span! And I only walked three minute intervals. Yay me.]

Since shortly after transplant I've been experiencing feelings of guilt over the course of my recovery. It's been good; it's been - honestly - relatively easy. Other patients have every reason to be jealous and to accuse me of not actually having had the full transplant experience. I don't know why I haven't had so many problems. I am mindful of the collection of complications, procedures, and extended hospital stays I did NOT have. Without naming names, I have close friends all transplanted here at Duke and within a few weeks of me on either side, who have collectively experienced: uncontrolled bleeding, uncontrollable diarrhea, loss of digits, damage to the heart, strokes, heart attacks, sepsis, failing kidneys, failing liver, paralyzed diaphragm, bowel blockages, subcutaneous air, fluid buildup in the extremities, fluid around the lungs, nausea, uncontrollable pain, G-J tubes, tracheotomies, failed PICC lines, failed ports, clots, ECMO...

I have experienced NONE of that -- yet I dare count myself among the transplanted warriors? I know NOTHING of the true pains of transplant! I know this now.

But today I was put on the spot by the physical therapist teaching this afternoon's education class. It was one I hadn't heard yet, even after a total of 80 previous rehab sessions, so I sat in. She was talking about the importance of being as physically fit as possible for transplant recovery. Duke researchers have statistically linked 6-minute-walk distances pre-transplant to length-of-stay post transplant. The farther you can go, the shorter your hospital stay, in general. And they have a minimum required distance for a reason.

"Now, I don't want to call anybody out in here," she said, "but would anybody post-transplant like to say something about this?" Not QUITE looking at me. I wanted to say "oh, sure, but that's a very general correlation." I certainly know exceptions. People who worked hard in rehab, but ended up hospitalized for a long time; and people who kinda slacked at rehab, but who were out in two weeks. Statistics aren't a promise, I guess.

So I stepped up, played the party line, and explained my case. "Nine days." I let that sink in for a moment. "I spent 44 sessions of rehab before transplant and I worked hard at each and every one of them. My last pre-transplant 6-minute walk was 7 laps. And I was in the hospital only 9 days. I don't know how long I'd have been there if I hadn't built up my strength here in rehab first." I didn't elaborate further, but figured those who want to know more will seek me out.

And they did. I talked with three patient-caregiver couples before they left, providing details, even once explaining how astounded I was when I was asked to stand and walk in ICU - and did!

I hit the restroom before I left and on my way out, the lecturer caught up to me.

"I didn't mean to put you on the spot, but these patients really needed to hear that. From you." She went on. "We're finding more and more that patients complain they don't have enough contact with post-transplant patients - they just need somebody to talk to and they want to hear the positive stories."

Well... patients want to hear - NEED to hear - what's coming, good and bad. Period. It is dishonest not to brace them about the possible and probable complications; it's almost criminal not to give them a precis of typical procedures that often need to be done post-transplant. It's a fucking horrorshow storybook, to be sure. But as I've been told and as I've seen, incoming patients also want - need - to hear how well it can go, as well. That with hard work, careful planning, and good luck a transplant can go by the book. It is possible to recover well and get out in nine days. And come back to rehab and burn up the track.

Today I was reminded that my recovery, while not perfect by any means, has been enough of a shining example that it provides real hope and inspiration to some very sick and desperate people. My feelings of guilt are not going to go away; but if I acknowledge that there's something in my story worth teaching, those feelings are partially neutralized. If just one more patient has a better recovery for using me as an example of how it's done (as I have used Rudy and Jerry), then I'll have gained some worth in this community.

Missing pieces

Post-transplant day 73, pulmonary rehab #36. The missing piece.

Call it worry. Call it unhappy anticipation. Call it separation anxiety. But when one of my people is missing from rehab, I get anxious. I get the jitters and can't focus.

Let me define "my people". I'm talking about my close friends, especially the ones I knew before I moved to Durham, but also the ones w/ CF who made contact w/ me early and who have depended on me for advice and anecdotes and guidance. The ones who work hard in rehab and who anxiously await their transplants; or the ones who have had their transplants and are struggling to get out or stay out of the hospital. My sisters and my brothers. "My people" is a list that grows longer weekly, it seems, but it only goes to show that the friends you make in rehab are something special.

So when a rehab day goes by that someone doesn't show up, it can be for only four reasons: they got transplanted and are in the hospital; they got sick and are back in the hospital; they had conflicting clinic appointments; or, recovered enough with all surgeries done, they graduated and went home. Of course you can imagine I fear the worst each time, especially when someone isn't yet even listed, or is newly post-transplant.

I look around each day and wonder who's missing? When I figure out who isn't there, I wonder why? Generally I can't ask the staff. Even if they know, they're constrained by HIPAA. What I can get from staff is whether they know or not - which means hospital/clinic...or the person is gone for some other reason. Maybe people just play hooky from time to time. Hell, I wanted to play hooky today. Still, even if it's just a clinic conflict, I'm relieved when they come back. Rehab doesn't seem *right* until they're back, because I firmly believe rehab is our place. When someone is gone, it's as if a piece is missing from a puzzle.

I don't know if anybody else feels the same sort of stress when their friends are absent. I don't know if anybody feels that way about ME, although I do know I'm asked after. And the time grows near when I will be gone for good; back to my home in NYC and only visiting rehab when I have a multiple-day stay in Durham for some procedure. And those will be few and far between, and my friends will - I hope - have also soon moved on. When I do leave, in March, will people notice I've gone missing?

Recently, a friend of mine, Dan Jagendorff, passed away. He was too young, too young; yet he is gone. Unexpectedly....ripped fom us - his friends, family, and colleagues - without warning. This next season at Spaeth Design will be hard without Dan's presence in the prop shop. The man could build anything. There's a raw part of my soul where my decade-old friendship with Dan used to be. The Spaeth puzzle will find a replacement piece, but the fit won't be the same. The picture will be different.

Similarly, it is that way at rehab when people leave for good. The mix changes; the change in rhythm hurts a little. Then a new rhythm develops...until, once again, someone goes missing.

Sometimes, they don't come back after transplant. It is rare, but I know of two, one of whom I had just started to get to know better at rehab. It's an uncomfortable fact of our modern science: transplantation is dangerous. It is imperfect, touchy, life-and-death. Some never make it to transplant; we are sick, after all, and there's a shortage of organs. And some people never leave the hospital. They are not merely a missing piece at rehab, but also in the lives of the people who knew them, much as each and every donor is now a missing piece in the puzzle of their loved ones' lives.

At my initial surgical consult, Dr. Reddy was very blunt: I may not survive the surgery. 1% don't. I may die in the hospital. Another 1-2%. 5% of those who leave the hospital won't survive their first year. While I had (have) everything going for me, I could shove those small chances to the back of my mind - but I do have a will and advanced directive because of those very possibilities. I am left wondering, though, now that I'm on the other side: have I made enough impact on people's lives, brought them enough joy, that I would have left a Cris-shaped hole in the universe? Would the pictures of people's lives have been missing a piece? And what light would shine through that hole?

Today I looked around and, excepting April who I knew was out due to surgery and Denise who is still inpatient, it seemed everybody expected was there. Piper, Lynda, Corey, Ellie, JD, Heather, Rob, Corrine, the Weird Sisters, and even my newest acquaintances, Gloria, Kristin, Jesse, and Cynthia. My anxiety was greatly reduced.

Today I was reminded that though you can fill the pieces in and complete the puzzle in a number of ways, you will never get the same picture as before. All you can hope for is as complete a picture as possible.

Rest

Post-transplant day 70. Rehab #33.  Rest.

Today I'm ten weeks out from transplant.  This has been, as my transplant twin put it, both the longest and shortest 70 days ever.  Of course, I've been thinking of my donor a lot today, whomever he or she may have been.  But I've also been thinking about the concept of rest.

Today I arrived at rehab early and was able to join the Tuesday "circuit" class, in which the floor group breaks into twos or threes and move from station to station, doing two whole circuits.  Each station involves a minute of some specialized form of exercise, with a minute of rest in between as we shift to the next station.  Circuit usually involves one station that is just ... rest.

Now, last week was an interesting beast, involving an exhausting pell-mell run to and from New York, dodging winter storms the whole way.  Then four different successive activities with colleagues and friends Wednesday night.  By the time I went to bed, I was REALLY ready for some sleep.  And, for once, slept quite well, physical exhaustion combining with tramadol and tylenol to produce oblivion.

What I didn't expect was that this rest would be extended for another 24 hours, as snow forced me to wait out a day in the city before hitting the road.  I spent the day lazing around my friend Marci's apartment, watching the Olympics and the news.  What resulted was a fantastic Friday drive, doing the entire 550 miles in one shot with less effort than the drive up.  How could it be so easy coming back, even with the wet and salty freeways and harried traffic?

Perhaps the answer lies in part of a conversation I had w/ Lynda Jensen.  As she passed me while I was finishing up on the treadmill, she asked how long the back pain lasts.  I gave her an honest appraisal of that.  Too long, at four to eight weeks, but getting incrementally better every day.  Use the heating pads at rehab, I'd previously suggested, and she said she was.  I asked if she was managing her pain well, if she had Oxycontin on hand.  She'd filled the script, but hadn't taken any, she said.  And then I became a drug pusher:

"Use it," I said.  "If pain is keeping you awake AT ALL, use the oxy.  Sleep is as important a part of recovery as any of the rest of this."

And there it is.  The keystone not only to recovery but to a well-lived life:  rest.  Real rest.  And at this stage - recovering from transplant - there's so much that gets in the way of that: hospital schedules, bad neighbors, pain, med-induced insomnia, more pain, plain old worry.  So, yes, I advocate doing what one has to to ensure a good night's sleep, most nights of the week.  Without rest, without breaks from the activities of life - physical and mental, social and spiritual, jobs, family, obligations, exercise - those activities begin to be ineffective.  In rest, our bodies and minds rebuild themselves.  BY resting, we enable the activities of our lives also to build us up.  Without rest, not only are we deprived of the unconscious rebuilding, but also the wakeful building.

From the macro to the micro, rest counts: Currently, I'm on a long rest from work, but ready to wake up.  I'm working on making my nightly rests better - higher quality, if not more quantity.  During rehab, I build in easier sections - "running rests" so I can move through my two hours efficiently.

Today, and last week, I was reminded that I, too, need rest.  That no matter my drive or work ethic, down time remains a key element of success.  And to my donor, who has allowed me to live long enough to come to this epiphany, may you also rest...in peace.  And thank you.

Die with your boots on

Post-transplant day #59. What have I lost?

"Um...well, it's kind of funny. When I got my diagnosis – cancer – I said to myself, y'know, 'Why me?' And then the other day when I got the good news, I said the same thing." - Walter White, Breaking Bad S2E10

No, Walt isn't talking about survivor's guilt; he was talking about what gets stripped from you when you are no longer dying.

There's something I've lost in this whole process, a part that's been peeled away from me and left me exposed and raw.  Part of my psychic skin has been removed.  With the replacement of my lungs, I am no longer the man I was, that much is self-evident, but it goes much deeper than a mere change of address for a pair of lungs, deeper than the psychological challenges of recovering.

People often exclaim about my mental strength; normal people who have never had to handle a chronic illness profess that "[we] don't know how you do it!"  Well, the easiest answer is that you don't have a choice.  You do, of course, but the implication is that rolling over and dying is not a choice - so we fight.  And when your fight is daily and lifelong, it becomes not just something you DO, but something you ARE.  You GROW armor, not just put it on.

I've lived my life so long battling the CF monster that my warrior self is a fundamental part of who I am.  Now, through deus ex machina, the hardest part of that fight is alleviated, banished.  The nastiest head cut off the hydra.  Oh, sure, a new head or two is growing back and will represent a new battle - but it is a different one, requiring learning new skills and tactics.  But I used my long experience in handling my pulmonary problem as my armor to handle the ills of the world.  My cough was my weapon.  And now it has been stripped from me.  My hyper-vigilance was my armor. And now it may be overbearing.   To be put into remission, to get new lungs, to have a death sentence put on hold is to be unsure if its appropriate to continue wearing the same armor that got us this far.

This afternoon, with fellow 59-day survivor April Hansen, I saw Dallas Buyers Club, a movie which hits close to home due to its examination of terminal illness and of fighting bureaucracy ....many sentiments expressed in words I've only kept in my heart 'til now.  I was constantly hit by moments that were too similar to my own experience.  The moment when Ron climbs out of his car, forgetting he's connected to an IV, and yanks his PICC line -- I felt that physically.  The desperation for drugs that are either banned by the FDA, or not approved yet, especially rang true, as the combination therapy from Vertex Pharmaceuticals for cystics with Double delta-F508 heads into Phase II trials. 

But what I most liked was watching Ron Woodruff develop a better, more hardened personality.  He becomes an honorable warrior in the face of being forced to fight a monstrous disease (and the system). The things he DOES in order to find alternative treatments and survive become the thing he IS.  He becomes nothing short of a modern samurai.  As Ron would say, I liked his style.

[This is not an attitude all people with a terminal illness cultivate.  If I didn't have proof of that before, I do now in front of me at rehab.  Those of us who have grown up with our disease (CFers) tend to have a far better grasp of the medicine ahead of us and handle medical difficulties easier than those who have had their disease sprung on them (COPD, IPF, etc).]

Now, Ron died with his boots on seven years after his diagnosis.  In the 80's and early 90's, it was inevitable.  But what Ron didn't lose was the integral parts of himself - the shield and the sword.

Today, I was reminded of the best parts of us that chronic and terminal illness builds into us.  The strength to survive is made of simple everyday tasks, nothing special really, but tasks which must be *acted* upon.  Every.  Day. And when the need for those particular refined actions is removed...what's left?  Sure the fight is still there, in a different form; but the armor I am growing now is unfamiliar and doesn't fit the same as before.  I miss my old armor.  But I'll move forward with what I've got now and hope, when the time comes, to die with my boots on.