January 31, 2014


Post-transplant day #51, pulmonary rehab #24.

I strip off my sweaty workout clothes.  Then, like the newly blind, my fingers slowly and curiously trace the line of brail that tells the most recent chapter in my life story.  The rivulet of new, pink fibrotic tissue leads my fingertips from one armpit to the other along a meandering course, detouring below both breasts, but rising in a graceful arc across my sternum.  But I encounter not soft, yielding newly-mended flesh, but rather the protective metal bridges forcibly punched into my skin, spanning from one bank to the other, feeling being gained along the short trip south across the incision. 

My breasts are numb. Most of the nerves that pick up sensation come upward, from below and behind. Saving my life meant cutting through those nerves, leaving my nipples, aereola, and surrounding breasts deadened.   Yet immediately south of the scar, sensation has returned almost completely, the nerve endings there still having a pathway back to my brain.

As my fingers play the counting game, starting at one armpit and attempting to single out each individual staple along the way, testing, pushing a little, seeing which ones are firm and which ones wiggle, I come across a livelier zone of sensation.  Across my sternum, both sides of the river of scar tissue are active.  Sensation in the north and the south.  Then I am again back in familiar territory - a mirrored map of the other side, still with sensation below the line of demarcation, none above.

This long river of a scar, paired with the outpost glacial lake above it, marking where my port once stood proud of my chest, is now the story of my life.  Well, two lives, really.  Four, if you want to get technical.

What?  Four?

After rehab today, a few of us made impromptu plans for dinner, ending up at an ale house.  In the course of conversation, it came up that of the three of us transplantees who were there, one is a retransplant and that the first time around, she received seven units of blood.  I got to thinking about that.  I'd almost forgotten about the blood transfusions.

First transplants are generally less bloody, as the scalpel cauterizes as it goes. My own transplant went well, yet I required two blood transfusions afterwards [I don't know how many units (if any) during the operation].  But at 4:28 a.m. December 11th, and again at 6:47 a.m., I required extra blood. Two units of blood from two strangers who donated at some point in the last few weeks.  People who didn't know how or when or why their blood would be used - or even if - yet took time out of their busy schedules to donate just in case it could be used.

Which means that not only did one stranger save my life, but three.  Though the body replaces blood, I will forever have a small part of two other living souls in me, as well as a large part of one deceased donor.  I am grateful even for these smaller, easier donations, for without the simple blood transfusions, i would not have made it.

As my fingers trace my zipper of staples, my thoughts are directed again towards my main donor.  Who was this person?  What were they  like? I have no way of knowing right now; not even if my donor was a man or woman, old or young.  I love how these lungs feel in me and how well they'e doing - so I imagine my donor to be much like me: male, approaching middle age or slightly younger, about my size.  I don't believe he ever smoked a day in his life.  I think he may have been physically fit in general, if not an athlete.  This is all supposition, of course.  I am imagining a person I can easily admire and so feel closer kinship, reassuring myself that my new lungs once belonged to someone I could have called brother.

Perhaps it is completely different.  Maybe these lungs came from a person I would be unable to connect with in usual society.  Sassy, loud and proud black woman?  Tiring Chinese immigrant empty-nester?  Regular ol' white trash with no education, no morals, no self-control?  Perhaps.  And if so, then even then I embrace that person as my brother or sister and am forever grateful - because for whomever he (or she) may have been, whatever good or bad he did in life, whatever impact he made or failed to make on the people around him, he did three things so absolutely right: he took good care of his lungs in his lifetime, he consented to be an organ donor, and he let his family know his wishes.  And for those acts, he saved my life.

I have no way to thank him directly.  Never will be able to.  But I can live life for two, now.  I can honor the multiplicity of lives that have combined to keep mine going by living each day fully, setting new goals, exploring new territory, achieving new successes, giving back to the community with my time and energy.  I have no choice in this.  To walk away from Durham and live only for myself would be a sin. 

Tonight, sitting at the table with two close friends, totaling four complete double-lung transplants and multiple transfusions, I was struck by how many souls really partook in our humble meal, and that three of us are living for six of us.  Tonight I am reminded that the best way to honor my donor's sacrifice is to live doubly; for now, I breathe for two.

January 28, 2014

Every One An Athlete

Post-transpalnt day 48, pulmonary rehab #22.  Every one an athlete.

"The difference between a jogger and a runner is an entry blank."  I first heard this phrase on Phedippidations several years ago.  It is true enough in its strictest sense; but when applied to include all athletic endeavor, the sentiment becomes clearer, crisper and sharper; the truth of it forming like an old Polaroid slowly developing in your hands.

Last Friday was not the best rehab day for me.  I had knee pain, I was rushed, I had blood sugar issues.  And I questioned myself: Am I an athlete?  I certainly didn't feel like one.  I asked myself what makes an athlete?  I certainly have the training and knowledge of an experienced athlete - I know a bit about good nutrition, training cycles, race strategy, and recovery.  I know from hard experience what over-training is, how long a sports injury can sideline you, what it is like to pour hundreds of hours into getting ready for a single event, the thrill of crossing that finish line.  But am I yet an athlete?  I mean, I haven't truly RUN a race in years.  Even when I was running, it was....poor.  My best finishes were mid-pack.

And yet - I must remind myself - I finished. Always. Better yet: I started.  Because no matter how many races entered, no matter how many training miles, I never felt like an *athlete* until I crossed the starting line.  And me being me, I usually finish what I start.  I have plenty of races I entered but didn't attend due to injury, bad scheduling, or inadequate training; but I have yet to fail to finish any event I started.

But does finishing a race make one an athlete?  Does starting it? 

Today, in rehab, I looked around at my fellow patients with pride.  Most of them are not fast; most are not wholly capable.  The pre-transplant patients work their butts off despite being crippled by an inability to oxygenate or blow off CO2; the post-transplant patients can breathe, but are crippled by the massive bodily trauma of the transplant itself, not to mention the secondary surgeries and procedures that leave us festooned with implanted tubes of various kinds long after we've left the hospital.  Every single one of them is fighting for survival and every single one is doing so by getting off their asses, brushing off the Cheetos dust, and making *motion* happen.  They do so to the best of *their* abilities.  They don't just talk about training; they show up and they do it. 

Does that make every gym rat in every Gold's Gym an athlete?  I'm not so sure.  I surmise that a lot of what makes an athlete has to do with willpower.  If it takes little willpower and even less effort for you to do 20 minutes on an elliptical, then I have to doubt your commit to personal fitness.  But if the task ahead of you requires great amounts of willpower, 100% effort and you still are doing it every day - then you've stepped into the arena with everybody else properly termed "athlete".  For I have seen the strongest of men laid low enough that 1 pound hand weights were too much by the end of 12 reps - yet. he. still. lifts.

I have a lot of athlete friends who perform at a very high level - Boston Marathon qualifier types; triathlon regulars; Ironmen and Ironwomen.  But their drive for achievement physically is no greater than many of the patients at rehab - it is just applied to different activity and at a different level.  I cannot properly call them athletes without also deeming my fellow patients as such, too.

But am *I* an athlete?  Today I did not feel energetic, after an early morning start at clinic.  But buoyed by good news (getting cleared officially by my pulmonologist and assistant tx surgeon each for light jogging, light cycling, rock climbing, and - eventually - even SCUBA), I tackled today's rehab the best I could.  And - to my surprise - did a little better than I thought I would.  The bike, for instance, was supposed to be 17 minutes on Level 3, 3 minutes on level two.... but the athlete in me just shrugged and burned through a full 20 on level 3. 

That effort brought back to me a conversation I had with Piper Beatty when I mentioned getting my bicycle back out of the closet and going on that test ride yesterday.  "You're a badass, as usual," she texted.  My reply was that I am merely a reflection of the company I keep, meaning that my own efforts are nothing more than an emulation of the best of what I see in my friends. It's a question not of present physical fitness, nor inate ability, but of willpower.  I see it often in rehab - patients suggesting to their RTs, "you know, I think I could try the heavier ankle weights today" or "this theraband has gotten too easy; can I try the next color?"

My rehab friend Kyle had his first day back today after being released from the hospital last week.  He did not have an easy transplant course - his was one of the most convoluted cases I know of.  Kyle required an additional kidney transplant and had many complications.  He spent six weeks in the hospital, most of it ICU.  And yet today there he was happily chipping away at the physical tasks before him.  And when we saw each other and I approached, his first words were, with a smile: "Cris!  How's your recovery going?"  Well, Kyle, that's what I was about to ask you, buddy...

Today, I was reminded that being an athlete is not about the level at which you perform, but about how you perform at the level you're at.

January 22, 2014

O, Death

 Post-transplant day 43.

"O Death," someone would pray,
"Can you wait to call me another day?"

 Let's not fool ourselves.  This isn't about illness or transplant or recuperation.  It isn't about a "viable treatment strategy for end-stage lung disease."  This is about cheating death, plain and simple.

We tend to avoid using that term, "death".  As if we're afraid, as humans, that by invoking its name, it will come all the faster.  We swerve away from listing it in our minds as among the possible consequences of getting a transplant, or not getting one in time.  The docs are not so averse.  They are blunt and up front about that possibility.  They have to be; because it happens.  From time to time.

Let me be blunt.  Whenever I used the phrase in writing or conversation, "I don't have much time left," I wasn't kidding.  As my PFTs plummeted and my CO2 levels climbed, I could feel death closing in. I had a bad scare one day in rehab about seven weeks ago when in the midst of CO2 induced tunnel-vision, I mistook Piper Beatty's figure as the Grim Reaper himself.  I am not one to believe in the supernatural - but my heart skipped a beat.

Death also haunts us even once lungs come.  Death is waiting in the operating room, in PACU, in ICU. It is to the surgeons credit that only 1% die on the operating table these days and fewer than 5% before leaving the hospital. Death waits for us even then, coming in the form of bacteria, viruses, fungii, parasites, rejection, or cancer.  These target the immunosuppressed.

But the possibility of death is never far away.  I have one grandmotherly friend in ICU sixty days now and has been shocked back to life a number of times.  And another New York-to-Durham CFer, pre-tx, had a heart attack during routine PFTs....he never came back.  And even though well into recovery, my friends in the hospital experience setbacks that still carry the risk of death, however slight.  They are discouraged and they are scared.  Typically, whatever problem it was eases and nobody thinks of death anymore, only recovery and life.

If you ever, at any point, thought, "Oh, of course Cris will get lungs!" then be reminded that there was never a guarantee and that the situation was not good.  My lung volume was dwindling weekly. My CO2 retention was rising geometrically.  I was one more clinic appointment away from being put on bipap.  I was not taking it for granted that I'd live to see New Year's, though I like to believe I could have hung on for several months longer.  I was worried.  But always, always I had faith in Duke.

 O Death please consider my age
Please don't take me at this stage!

Why do I write about this now, six weeks post-transplant?  Should I not be celebrating every small gain, every longer stride, each and every sequential breath?  Oh, I do!

But the fact remains that in the last four days, I've come across four notices of the passing of CFers.  None of them I knew personally, all younger than me.  Cystic Fibrosis still kills and it kills kids.  I don't think any of these four even had obtained their 30th year!  And I watch the behaviours of other young cystics - somewhat self-destructive behaviours - and I'm terrified for them.  They've fought against this disease for so long, they've forgotten that death is a real possibility.  All it'll take is the right massive chest infection or bowel blockage.

As due diligence toward a future project, I'm delving into the mass of CF-focused narrative literature.  There's a certain foundational reading series that is "required" of the knowledgeable CFer and I've been lax on reading anything but the Cliff's Notes versions.  Alex, The Life of a Child; Sick Girl Speaks; The Power of Two; Sixtyfive Roses...among others.  I have noticed that for each book that talks of triumphing over CF, there is a book written by the survivors - and in these books death wins.

Of course, Death comes for us all.  It's a given.  But being 42 years old, and highly privileged to know even older CFers such as Jerry Cahill, Lynda Jensen, and Janine Ullyette, I want to strike out against Death with the battle cry that we should ALL live to enjoy achy joints and greying hair!

All of this makes me angry.  And all I can do, right now, is channel that anger back into my efforts in rehab.  I walk laps faster and faster, push through the pain.  And when in my headphones "O Death" from O Brother, Where Art Thou? comes on, I intersperse my own lyric, whispering: "I beat death. I am beating death. I beat death. I am beating death..."

It is five o'clock in the morning on the 43rd day after my surgeons and I beat back death.   As the snow falls, I am reminded that every coming dawn is another victory over death; that though for the rest of my life, I will be in a pitched battle against death, for each day I grow stronger, I push death just a little farther away.

O Death O Death
Won't you spare me over 'til another year?
Won't you spare me over 'til another year?
Won't you spare me over 'til another year?

January 20, 2014

Letting the Animal Out of the Ark - or - 40 Days, Part II

 Post-transplant day 40.  Letting the animal out of the ark.

People forget that once it stopped raining and the Ark ran aground, Noah didn't just pop the hatch and release the hounds.  He waited 40 MORE days and nights to open the arc sending out doves each day to test the waters.  Only when he had a sign of terra firma did he open the Ark.

In a way, I am an Ark, too, that had to contain just one animal - the essential me, the athletic and powerful me.  Now, it took a long time to get to transplant.  71 days after moving, 33 days from being listed at Duke, 365 days from being listed in NY.  This ark had to weather quite a storm - and did!

But now recovery has proven to be a waiting game.  I am not allowed to lift above a certain weight until a certain amount of time has passed.  Not allowed to drive until certain time has passed.  Not allowed to jog or bicycle until certain time has passed.  But those timelines haven't been explicitly spelled out to me.  I did return to driving four weeks post, but only because I pushed.  Purportedly, I should be able to return to light jogging at six weeks, though that's in dispute by some of the respiratory therapists.  They seem to think 3 months.

Honestly, I couldn't wait that long.  So today, 40 days from being stitched up and sent to ICU, I went outside and interspersed stretches of walking with jogging for about a mile.

This was horrible.  My legs felt like wooden pegs with raw nerves shot throughout.  I haven't felt this awkward while jogging since...ever.  Even when I was a newcomer to the sport, it didn't feel like this.  But the first short section was the worst, the second better, the third not as good, the fourth segment better than the previous ones still, the fifth hurt a lot more... so a rollercoaster of experiences in one short mile.  But it felt good.  Even the pain in the legs felt GOOD.

But I was well-pleased with my lungs, which expanded and expanded to the limits of my chest cavity.  I didn't have coughing fits.  I didn't have to hunch over and catch my breath or blow off CO2.  I just breathed heavily and deeply.  (I will need to learn to breathe more quickly, I think, and that will come in time.)  It felt GOOD. 

It was generally 30 seconds jogging, a couple minutes walking.  And so on, for a 17:54 mile, my best pace in over a year.

So what should I say at rehab tomorrow?  Put me on the treadmill and let me at it, because I handled it on the sidewalks today?  Yes?

I didn't get around to putting my bicycle together this weekend, but could probably accomplish that mid-week.  I'm itching to put in a few sidewalk miles.

Today, I was reminded that though it will be an uphill physical battle, I still have the willpower to engage in that struggle.

January 18, 2014

Life After Breath, Part II

Concrete plans for the future start with picking an event.  In the running community, there's an old saying:  "What's the difference between a jogger and a runner? A bib."  The implication is that the difference between wandering along aimlessly and having a goals is PURPOSE.

So the next question after "what now?" becomes: "What is my purpose?"  I recently said to fellow blogger and lung recipient Piper Beatty that I can't go forward from this point living a life half-devoid of meaning, or engaging in activities that don't fulfill at least some good and beneficial purpose.  I can use this as a razor to divide the jobs I should take from those I shouldn't, for instance.  "Xmas windows, ok," I wrote. "Football halftime layouts, maybe not."  The difference being in that the purpose of the latter is mindless filler*, the former makes millions of people smile each season with memories that last a lifetime.

(*Obviously, the NFL attempts to embue meaning to these half-time shows, as they mostly center around saluting the various heros of our society: the military, victims of various diseases, attack survivors, etc.)

So with Purpose in mind, I have already begun to find a strategy for charting my new life, now that I have breath.  I've decided I can avoid the existential angst that comes with a blank calendar by...filling it in.

To that end, there are some very concrete events I can at least plan for and start to train for:

1)  I signed up for the TD Bank 5 Boro bike tour, May 4th. PURPOSE: reconquer a long bike ride as soon as possible.
2)  Talked over a possible timeline for moving back to New York with mom.  Tentatively March 8th-9th.  PURPOSE: to be able to plan out other events around this, events that take place in both Durham and New York.
3)  Verbally committed to riding the 11th annual Long Reach Long Riders ride, July 12th-18th. PURPOSE: to get back to motorcycling in a quick, supported way.  I can borrow one of two bikes, put my gear in the chase vehicle if needed, and have two dozen friends along to enjoy my return to biker status with.
4)  At the same time as congratulating Piper Beatty on setting a new 7East floor lap record, vowed to beat it should I be placed there for recovery after my stomach surgery.  Can I get a LINX, then get up and walk more than 5 miles?  Oh, Piper sets the bar high! PURPOSE: well,....just to see if I can, actually....
5) And...designed a tattoo.  See the pic.  PURPOSE:  to test if I have the kind of balls to actually go through with getting one.  I've never had one and have some pretty strict rules about getting one, not to mention that tattoos are now verboten according to all transplant centers.  And yet people do get them....

And there are other events I will call my coordinator about on Tuesday and push to get scheduled.  I just loathe an unsecured, in-flux calendar.  I want at least a tentative date scheduled for my consult with Dr Lin, for instance, and date(s) for my stomach surgery.

Tonight, I am reminded that we don't live our life successfully from moment to moment and in the dark - we need light to see by, and we bring the light by anticipating, planning, challenging ourselves, and committing.

January 16, 2014

Life After Breath

Post-transplant day 37. Pulmonary rehab #16.  Life After Breath.

I can breathe again.

So now....what?
So NOW what??
So!  Now what?

Actors rehearse their lines with emphasis on different words to see how things play out; how they sound and feel, and which option works best for telling the tale.  Similarly, up to now, I could mentally rehearse the possible paths in front of me, knowing I'd be heading down this fork or that fork and the more mental rehearsal of the possibilities, the better.

But I'm unprepared for the this advent: the end of the trail.

Let me explain.  For over three years, this transplant journey has been about planning; about learning all the things that could happen, in addition to the things that WILL happen.  But now almost all of those things have come to pass or have gone past me without becoming part of my tale.  The waiting happened, the preparation, the pre-tx rehab, getting all my test numbers just right.  Getting listed, and waiting and waiting and waiting.  THE TRANSPLANT.  The immediate followup care in the hospital and the few weeks after.  The first month out bronch w/ biopsies.  The rehab post-transplant.

But now those rehearsal options and known branches of the future have been lived or not lived and I am running out of path.  My foresight is failing me.  Now the path gets more diffuse, as my particular trail has been trodden by fewer people.  From this point, the stories of those who have gone before me differentiate more and more, though admittedly retaining common themes.  And I am perhaps even losing the trace of my own path.  Now I'm just going on momentum.

Let's make this concrete.  Today I've received several pieces of information that both clarify and obscure the future. 

First, I thought I was doing well, but I found out that my bronch cultures are showing colonization with PA and Mycobacterium Chelonae.  My first post-transplant bumps in the road.  I'm super not thrilled about this.  I don't know how virulent these are, whether I am a danger to my transplanted friends or not, whether these are a danger to me or not.  The doctors don't seem to be in a panic - they haven't assigned any new meds.  Reynolds says I'll likely remain colonized by PA the rest of my life and we will handle flareups when they happen.  So...the days of my CF IVs aren't truly over, I guess.  And the MC will be better defined by a chest CT not being done until the 21st.  I'm told the MC is everywhere in the environment, even tap water, so it's no surprise to see it in my cultures.  But I am dismayed.

Second, I had a chat with my case coordinator at my insurance. There are some good indicators toward me getting a LINX approved.  When I mentioned that I've heard (from my surgeon) that Medicare has begun approving LINX and saw online from other patients that United HealthCare has begun approving LINX, she said that would be very helpful in getting my request approved.  Even more reassuring is that Duke University Medical Center became in-network to my insurance (rather than PPO) on December 1st!  That doesn't affect what I pay, but it does speak to the level of relationship between the two entities - the level of trust.  I hope this works in my favor.  But as of now, I have no knowledge of where in the filing/denial/appeals process we are or when my stomach surgery will be.  There's no timeline here.  I feel like I'm chasing a mirage that I'm required to catch.

Third, how well I am doing in regards to lung function and ability (if not in regards to lung cultures) was reinforced by a discussion with the respiratory therapist in charge of my chart at rehab.  She won't or can't give me a timeline for when I can try jogging again.  Some people say 6 weeks; she thinks 3 months.  I've asked my coordintaor to ask my doctor and surgeon.  I will follow their guidelines.  But for right now, I have no charted future there.

She also wants to graduate me next Friday, on what will be my 21st session, as I'm clearly restored to a highly functional status.  I'll spend my remaining days in Durham working out at the Center For Living, which has a larger gym, but which is not where friends Piper and Denise will be going.  I am going to try to bargain for some extra time at Croisdaile Pulmonary Rehab, so as to have some overlap with the girls.  I feel its important to support them in their first days back; but I also kind of need this for some kind of closure for myself.  Purely selfish.  A timeline is in place - but not one I'm real happy with - it will leave me without completion.

Of course, the girls themselves are another aspect of this existential crisis of unmapped, disappearing trail: Piper is waiting only for a couple of chest tubes to dry up, but there's no timetable in the world can predict when that will happen.  Best case scenario, she'll get out of the hospital Monday and perhaps she'll be back to Rehab Wednesday.  And Denise?  I'm not sure what's keeping her in ICU, to be honest.  She's walking laps there.  Can't speak yet, but that's not a requirement to go to stepdown.  Hell, patients have left stepdown and gone home (and back to rehab) with intact trachs!  I suspect her stay in stepdown will be short, as the majority of issues that have kept her in ICU and would keep her in stepdown have cleared up.  In fact, she's winning the chest-tube race against Piper, I believe.  I must check on her personally tomorrow and get some answers from the nurse.  I'd love to run into her attending or her surgeon and just press for a reasonable-case scenario type timeline. 

Ah, but there's the rub.  You can't put a timeline on ANY OF THIS.  That's not how medicine works.  Our bodies don't punch a timeclock, no matter how much the psyche DOES.  Of late, I have been asked repeatedly when I'm coming back to New York, when I can return to work for these or those people.... I just don't know!  I can't know!  The best I can predict is 8-12 more weeks.  Believe me, I would like nothing better than for LINX to be approved tomorrow, placed next week, me healed up fully and hitting FEV1 100% in a month, and Dr Reynolds saying I can move back at the end of February.  But that's an illusory and distracting piece of wishful thinking - inventing a map in my head of the terrain I'd like to travel, rather than the terrain I will travel.

Tonight, I am reminded that I am not, in fact, clairvoyant and I'm subject to forces beyond my control; that "now what?" may have only the paltriest details, none of them concrete; that "now what?" may be more impenetrable haze than crystal ball.  Tonight,  I can only wait...and walk....and wish.

January 14, 2014

A View From The (Pelvic) Bridge

Post-transplant day 34; pulmonary rehab #13.  

I spend a lot of time looking at ceilings.  ICU ceiling, stepdown ceiling, my bedroom ceiling, the very nice ceiling at rehab during floor exercises.  That one reminds me of a gold and ebony river of tile, with fountains of light dotted throughout.  I find peace and harmony in a well-installed ceiling.  It's a matter of perspective, really.

Rehab is getting...repetitious.  Which is to say I'm starting to find it boring; it has always been repetitious!  But I am finding I'm using my boredom to attempt to go further, faster.  The problem is, my body isn't quite building up in the strength department like it is in the speed and endurance departments. So I use the latter to fuel the former, distilling strength from dull repetition. Laps.  Laps, laps, laps.  Or, seen another way, winding up.  (For what, I'm not sure.)  It's a matter of perspective.

I'm wanting to do better, faster than I currently am; not just in rehab, but also with my PFT scores.  If I don't blow the numbers I was expecting, I am disappointed.  Today, I'd hoped to blow an 80% FEV1 and at least 70% FVC, but fell short of both.  Never mind that my PFTs were technically up a couple of points from last week - I still failed to meet MY goal.  In a similar vein, Dr. Reynolds added another med, a beta-blocker. This runs counter to my goal of shedding some of these meds that I'm assured are "temporary".  I'm disappointed in myself somehow, in my body... Of course, people don't understand this failure. They see the PFTs, which are great for being five weeks out, and see an incredible success.  They see the right medicine being prescribed for good reasons.  But I want more.  So victory looks like failure. It's all in how you see it, it's in what yardstick you're using.

But the change of view isn't always negative.  I had a big shift in perspective Friday when I met my next surgeon, Dr. Hartwig, who will be performing a procedure to stop reflux.  I had an image of a certain kind of surgeon, based on little (or perhaps was an amalgam of Drs Lin and Davis), and was prepared to have to fight tooth and nail to get him to agree to a LINX instead of doing a Nissen fundoplication.  But the night before the meeting, I looked on the manufacturer's website for centers that do LINX.  The only one listed for North Carolina? Duke.  And the only surgeon listed?  Dr. Matthew Hartwig.

I about fell out of my seat.

Then, the next morning, after talking to a PA, a tall late-30's-ish man in an impeccable suit and Italian shoes strode through the door.  I had no idea why one of the hospital's lawyers needed to talk to me.  "Hi.  I'm Matt Hartwig."

Again.  Butt, meet floor.

And...he's with me.  From the outset.  He heard of my interest, has performed the LINX installation many times, thinks its appropriate in my case, etc.  His PA even had paperwork lined up to get a 3rd party advocate on the case to get this pushed through the inevitable insurance denials.  Once again - shocked!

I walked out of Duke on Friday with a whole new appreciation of the lung transplant team.  They are stern folks and unbending in some ways (if you have GERD, you WILL have an operation for that).  But within a framework, and once through the looking glass of your transplant, the doctors and staff are willing to work with you as a partner, not just as a patient.

During floor class today, as I lay staring at that beautiful ceiling and grunting through ankle-weighted exercises and pelvic bridges, I thought over Mom's next adventure.  She has been a good caregiver so far, but we both admit her load has been relatively light; the job frankly easy, as these things go.  Now Mom is proposing to a close friend who also needs lungs that she come to Duke and Mom will be her primary caregiver and her husband, who must remain in Florida to keep working to keep the insurance, will be secondary.  It's a good plan. Noble even.  But I worry that Mom could be getting into a hell of which we have no idea.  Even some of our long-term ICU stay acquaintances have had it easier than what COULD HAPPEN.  Mom may be in for a massive shift of perspective, too.

Today, I am reminded that sometimes people aren't what I expect them to be; that there's a level of strength and compassion that bubbles to the surface when it's most needed.  And that there's always more than one way to see things.

January 10, 2014

Survivor's Guilt

1 MONTH post-transplant; Pulmonary Rehab #12.

Today's bicycle and walk involved meditating on some sobering realities.

Recently, a friend sent me a statistic put out by the Cystic Fibrosis Foundation: that there are only 1300 of us CFers over 40 (out of 30,000 in the US). I really couldn't give credence to this. I doubt CFF stats as it is. It didn't jive. I know PLENTY of CFers over 40 - perhaps 2% of that statistic - 26 people or so. And I certainly don't know a proportionate number of CFers overall, 600, do I? But then, birds of a feather.... and I am moderator of a cystic fibrosis forum that attracts older patients as it is.... Hrm.

Then I got caught up in a FB thread in which the originator asked all CFers who could see the thread to post their age and location. There were hundreds of replies. And they're all kids. I mean...the vast majority are under 30.

There were only two replies from people older than I.

The median age of expected survival is now 41. But that's EXPECTED survival, not what's actually happening today. Could I really have survived so long as to be in such a small minority? 

I think of my close friends. Piper Beatty would not have lived into her 30s without a lung transplant. Denise Horgan would not have made it to 40, though thank god we'll get to celebrate that milestone next November! Every single CFer I personally know and have met in person is younger than me except for Jerry Cahill, who is 56, and Lynda Jensen, who is 47. She's the only older CFer than me in rehab.

I begin to realize that I have survived not merely a lung transplant, but a deadly disease that takes my compatriots way too early, before they've lived even half their lives.

And speaking of lung transplant, there are some who haven't come back. And they're not in the hospital anymore either. There's only one conclusion. There are some pre-tx who come at 3:30 and have been doing so since long before me and will be there long after me, waiting for their call. They have antibody issues, or similar, and they wait and wait. You may recall me talking about the prophetic Weird Sisters encounter - they are among the ones I think of as the Stalled Ones. They are in a very, VERY real Purgatory. Why am I one of the lucky few to breeze in on a short timeline, get listed, get transplanted, recuperate well...?

And recuperation...I'm real glad to have set or equaled some kind of record for leaving the hospital (9 days), but Piper is now in week 3 of her recovery, Denise 9 days still in the ICU, and other less close friends (but still important to me)... Jeannette in ICU for over a month, Kyle still in stepdown almost two months out... Why didn't things go easier for them? Don't tell me it's because they weren't as prepared or as fit. Denise sure as hell was, but she got a rawer deal. Speedbumps appear out of nowhere that seem capricious and no more predicatable than the roll of a die.

How have I done so well where others have .... not?? My accomplishments are cruel laughter in the face of their miseries. Ironically, to play the full hand dealt me and give full due to my donor's gift means I can't just mask the good numbers or hide myself away. Though it means thumbing my nose at my less fortunate peers, I must be all I can be. Hell, this weekend I'll be spending most of my time drafting. FOR MONEY. Who the hell a month out of a death's-door operation goes back to work??

But maybe I can carry this forward, somehow press the powers that be to look into new avenues of treatment, so that a whole lot more of us will be above 40. For instance, I was wondering if, since GERD seems to affect newly transplanted lungs, might it not have had an impact on my old CF lungs? Is my GERD ultimately responsible for tipping the balance and overwhelming any gains made by exercise and antibiotics? If so, then should the standardized CF treatment look to test for GERD on a regular basis in adults with CF and when found, should we be doing fundos or LINX on CF patients before their lungs deteriorate??

Today, I am reminded I have a responsibility not only to my donor and myself to make the most of this gift, but to all my cystic brothers and sisters, now and to come, to try to find better treatments while we also search for a cure. I have to. Because I have survived.

January 9, 2014

The Thief of Time

Post-tx day 29, pulmonary rehab #10:  The Thief of Time

Walking 30 minutes in rehab can be mind-numbing; your mind will wander.  Today, I found myself thinking about stasis and sedation. 

I've been reading a serial in Analog over the last few months called Lockstep.  Even if the name itself didn't already resonate with the frame of activity at rehab, the core sci-fi concept of the story certainly has begun to resonate.  A family invents a way to put people into stasis.  By being asleep 30 years and awake one month in endless repetition, and by having sub-light starfaring technology, mankind finds 70,000 worlds "next door" and sets up a vast empire.  In which people pass THIRTY YEARS in the course of "one night's sleep". Astonishing, when you think of it.  Eerily, the last issue of the magazine features two more stories dependent upon stasis issues for the plot.  In one, a crewman on a ship that will take 90 years to reach man's next homeworld finds he won't survive his turn in stasis.  So he lives, from age 8 to 80 on board the ship, managing to survive to see the new world, but losing all his friends, lovers, and family along the way - not to death, but to TIME. To stasis.

I begin to mesh this idea with the reality I'm living.  As I've told many, many transplant patients as they're about to go in, the hardest part of the whole process - the operation itself - is the easiest part for you; because it passes in a blink.  Your mind is suspended - again, stasis.  Sedation not only keeps you asleep, but erases a good part of any memory on either side of that sleep as well.  ICU time becomes compressed because you spend most of it sedated.

And the same is true of other procedures I've experienced.  Every time I go to Interventional Radiology, the procedure invariably takes longer than I remember, even when they're not putting me under, but rather just "making me comfortable."  Although, my last trip to IR, they had to have put me under.  For what I do remember are the clock times at the start and the end.  What was subjectively 15 minutes took about 2.5 hours!  Luckily, I was awake enough at the end to get the doctor to show me the 3" of catheter he retrieved from inside my jugular. 

But that time is lost.  And not in the way you lose time when you regularly sleep.  When you sleep, your brain still tracks time - hence people's ability to wake up 5 minutes before the alarm.  No, this time is LOST.  When I say the interval passes in a blink, I mean it.  To the mind, this is the stasis of sci-fi.

My latest example - and one where I now know sedation can last too long - is yesterday's bronch.  When inpatient, they do bronchs unsedated, but they're only looking at sutures and sucking out excretions.  When outpatient, the bronch also takes biopsies, so it is much longer and they want the patient sedated.  I talked to the doctor pre-procedure about strategies for numbing my reactive airway (nebulized lidocaine, which seems to have worked well) and he mentioned that CF patients are usually resistant to sedation and they go a little heavier with us.  So it went. 

Problem is, though he had a hard time getting me fully asleep (told me by phone today that I was attempting to text and trying to call Walgreens about my IVs), he finally did and got the bronch done.  What I could then tell him was that I think the sedation needs to be halted sooner and made lighter in general, for I lost THE ENTIRE EVENING.  Even though I went to dinner with friends (Mom driving, of course), I remember only snippets and Mom has told me of other events of which I have no memory.  I do NOT want to leave the bronch suite in that kind of mental suspension again!  In this case, I feel I've actually been robbed of time.  So we made notes and next month, we'll try going lighter, perhaps get me in earlier and keep me in recovery longer.  I'd rather be somewhat awake mid-procedure than be that deep again - for a bronch.  (Side note, it's apparently entirely normal to cough up blood clots the day after a bronch.)

My loss of time is minimal, of course, compared to Denise's.  She has spent seven days now in ICU, most of it completely sedated.  How much she'll remember is anyone's guess right now, but likely not more than a few minutes of it total.  It will be a shock to her to find out how much time has passed when they can finally wake her up fully and keep her there.  And given her racing heartrate when they try to bring her up, who knows how much time will be stolen from her mind, ultimately?  [Next day edit: To be honest, I awoke this morning with a certain gut feeling - I think they'll be successful in getting her off the vent today.]

And so I keep an eye on the clock as I walk laps. Today, I am reminded that while time may be passing slowly during this boring activity, it is at least passing perceived, rather than being slipped away by the stasis of sedation.

January 2, 2014

Impotence and Rage

I have no business writing this post this evening.  To put a finer point on it, I have no business writing about ME this evening.  My thoughts are with my dear friend Denise Horgan, who is lying in the hospital 28 hours post-transplant in ICU, on ECMO, with failing organs.  The new lungs are good, but cystic fibrosis and the attendant antibiotics have so poisoned the rest of her body... and there's nothing I can do to help her!  The feelings of impotence come flooding back...

More than a month ago, as I battled CO2 buildup while trudging around the track at rehab, I reflected on how impotent I felt.  And that that impotence had several facets, some of which persist through to today.

First, there is the obvious impotence of strength.  Before transplant, I was losing endurance rapdily.  Tasks that would have taken me 10 minutes a year ago now took 20 or 30.  Things I could have lifted easily, I could no longer lift.  In rehab I was able to gain some of that back, but once the CO2 kicked in, it started to fail again.  But I also didn't have the strength to prop myself up.  I didn't have the strength to be "the patient" to my family.  I let Mom handle communications with my family.  I just didn't have the strength to first get the facts of my life straight with mom and myself and THEN repeat them over and over on the phone.  I barely had the strength to keep in touch with the two women I've been going through this hell with, Piper and Denise.

Speaking of whom, my interactions with them highlighted the second impotence: inability to help.  If I could lay waste to the world and overturn mountains in order to find them lungs, I would have.  If I could have rendered...well, ANY significant help, I would have.  Unfortunately, physical and financial circumstances made that kind of help impossible.  The only help I've been, really, is acting as an advance scout of the Duke lung transplant program.  Maybe that helped in some small way, but...it does nothing to prevent their suffering or their pain.

There was a third type of impotence born of my own drive: inability to fulfill my own expectations.  I couldn't meet the goals I set for myself.  I kept falling short.  And shorter.  Years ago, I saw the need for a transplant coming and determined to find a spouse long before I needed it.  Someone who could stand by me in my moment of need, yet not someone who had a need to fill the role of nurse or mommy.  So how does that turn out?  I move in with my mother to be my caregiver for the duration of this odyssey.  Not a proud moment for a 42 year old man.

Fourth, impotence against the system to mold it to one's own needs and wants.  Especially here at Duke, which has a lot of "we always do this" and "we never do that" in their practice.  In a corner of medicine where individualized programs of care are nowhere more clearly needed, there's too much boilerplate medicine in evidence.

And today all of those points of impotence came flooding in, but in new ways.

For instance, strength, flexibility, and speed are returning - but I was told directly by a therapist not to try to be too big for my britches.  I can't lift more than 8 pounds. I can't drive.

I see some rehab friends who got transplanted finally returning to rehab after quite a while in the hospital.  Mary Frances and Shawn.  And as motivating as I was to them before all of us got our calls, I can't seem to motivate them now.  Impotence of persuasion.

Two closest friends - sisters really - lie in the hospital.  One recovering from her transplant with more hiccups to it than I'd like, but with a lot of spirit when she's awake.  The other is in ICU with great lungs but failing heart and kidneys and is septic.  She is....no, I'm not going to use that word yet....but she is in trouble.  And I am COMPLETELY FUCKING HELPLESS to stop her deterioration, or to render any aid to either woman.  I ask people on Facebook to pray for them because I know they believe in the power of prayer.  And if they believe it works, then it works.  *I* don't know if it works.  (On the other hand, we are all three transplanted in a very short amount of time, so maybe prayer works.)

So here I am in rehab, walking laps, shortly after New Year's, experiencing what can only be called an unqualified success, yet frustrated and anxious to the point of tears and depression because I can't do a thing to bring my sisters along with me.  I can't call my transplant truly successful unless Piper and Denise's transplants are also successful.  Until I see them both in rehab, both preparing to leave Durham once again strong and healthy, my own recovery will be missing a piece of the puzzle.  And this is the only piece I can't control or affect in some form.

All of this makes me angry.  All I can do is channel that anger back into my efforts in rehab.  I walk laps faster, push through the pain.  30 laps in 25 minutes. A mile and a half.  The therapists are impressed, but I'm not.  All I feel is impotent.

The Walls

Pulmonary Rehab Day 39. All in all, it's just another brick in the wall.

It was a clinic day for a lot of us. The NY crew Denise Horgan, Piper Beatty, and myself) were all there at the same time. We even got a quick picture together.  I think I will treasure this picture of us long after all of us are transplanted and back home. We're all smiling, though Denise's smile and mine can only be seen by our eyes; we're wearing masks. Piper has a commanding position from her wheelchair, while Denise wields her IV pole like Gandalf's staff. As for me, I have my hands on my hips in a "come at me bro" attitude.

But then we had our appointments and got a fresh look at things. Denise has hit a wall: waiting for a liver doc to weigh in on her case, an intractable chest infection that she's being re-admitted for, and still not listed. Piper has hit a wall: can't get in enough calories by mouth so she's sucking them in with a g-tube and she can't get enough CO2 out, so she'll be learning to sleep with a bipap to blow the CO2 out at night. As she puts it, "late-stage rejection both sucks and blows!"

As for me, my wall is also CO2, and a lung infection that, this time, doesn't even show up on the sputum cultures! The IVs have barely made a dent, but we'll continue them through Friday. Worse, my PFTs weren't great. My FEV1 hasn't budged, but my FVC has plummeted from 60% to 51%. Possibly the most telling is that while waiting to do the arterial blood gas, off oxygen, my sats hit 87% sitting quietly in just under 9 minutes. I've never dipped below 91% in 15 minutes in that situation.

Today, we each of us got a fresh hard look at the walls we face. But looking at that photo, I'm reminded of how tough we are. This is a picture of a crew that's going to fight to the bitter fucking end, one way or another. Never give up, never surrender. We will surmount any wall placed in our way.

January 1, 2014

On seeing 2014

Tears of joy. Never has seeing the new year arrive been so meaningful to me. There were times this last year I was not altogether sure I'd live to see 2014. My donor made that possible.

To my friends who have been harboring similar fears: we made it, baby! And we'll see many, many more.

To all my other friends and also to my family, who have stood by quietly encouraging, I thank you, I love you, and I hope all of you have an amazing 2014!!

"Reflect upon your present blessings - of which every man has many - not on your past misfortunes, of which all men have some." Charles Dickens