A soft lightning bolt

Post-transplant day #232

One year ago today, I was hit by a soft lightning bolt.

I'd been on Columbia's transplant list for 9 months already and had slowly come to the realization that people with Lung Allocation Scores in their 30s or 40s had zero chance of getting transplanted here. There were simply too many patients and, of course, not enough organs. Add to that the story of my dear friend Emily Gorsky, who lay dying in the ICU at the time, on full life support and yet STILL waiting for lungs, and I was getting downright scared. 

But on July 30th, 2013, I had an appointment with Dr Emily DiMango, my CF physician at Columbia. She had first referred me for transplant and now had called me in on thin pretense for a checkup. What she really wanted was to tell me to start looking elsewhere. She suggested Barnes, Cleveland, and Duke. I knew of the programs at Barnes (where my friend Missy Sedam got transplanted) and Cleveland, but Duke had somehow eluded my radar.

Fear doesn't come easily to me, but I was on a foundering ship and I knew it. And now the person who had been the primary consigliere of my health for the last ten years was urging me to abandon ship, even though it meant me leaving her hospital. It was like getting hit by lighting, but softly. I didn't need a clearer sign. It was time to change ships, change berths, change captains.

To sum up the story, my mother and I would go to a nice dinner two nights later and go over the pros and cons of every option. We chose Duke and we have no regrets. In fact, I feel a little stupid it took as long as it did for me to consider Duke, knowing what I know now. I believe I was the first of the Columbia patients to be referred to Duke, though there may have been one or two before me. What is certain is that once Denise, Piper, and myself all arrived and the benefits started being realized and relayed back to Columbia, more and more referrals came into Duke from there, not just from Dr DiMango, but also from Dr Arcasoy, head of Columbia's transplant program, himself!

Today I am reminded of the power and grace and compassion good doctors embody. Dr. Emily DiMango is one of the best physicians I've ever had and I feel lucky to have ever known her.

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."

A thank you note

Post-transplant day 182 ; 6 months.   A thank you note.

A six-month lungaversary in the middle of a workweek doesn't give itself over to heavy celebration, but it does to contemplation and review. Today marks the half-way mark to a year - a milestone of immense proportions. But I'm not discounting the importance of today.

Instead of rehashing the roller coaster recovery since transplant, or writing about my slightly stressful and never-ending ruminations about who my donor may have been (and yes I AM working on a letter to my donor's family), I have decided to write YOU a thank you note.

My dearly beloved, you gathered when I needed you most, to support and encourage and turn me away from negative thoughts. You gave me outlets for venting, souls to challenge in distracting word games, and examples I could compare to and realize I didn't have it so bad.

When I shouted into the internet void and told of some odd corner of my friends' and my journies, you listened and responded with sympathy, compassion, true sorrow for our speedbumps, and real enthusiasm for our gains. When I was silent.... even then, when I wasn't actively checking Facebook or my email, you were sending messages of support and love.

I've said before I couldn't have gotten through transplant without Piper Beatty, but in a broader way, I couldn't have gotten through it and the subsequent long recovery, without all of you.

Some of you are real-life friends, some are family, and some of you I've never met. One of you is now my girlfriend and I'm so thankful you had your eye on me. I hope to meet more of you as time goes by. Whatever the next six months brings, I hope it brings each of you the kind of personal support and love you showed me, especially if your life reaches a crisis point. Remember you can always reach out to me, too, for words of comfort or advice.

Today, six-months out from having my lungs replaced, I am reminded of the sanctity of close friendships, the warmth of friendly acquaintances, and the immeasurable worth of social support of every kind. Thank you all.

Even Tumbleweeds Have Roots

Post-transplant day 143, pulmonary rehab #69. Even tumbleweeds have roots.

Seven months to the day from when I arrived in Durham, I have received the last clearance I need to move home. I saw Hartwig's PA and it was determined that even though my Nissen recovery was far from normal (waking up in ICU, six nights in the hospital w/ complications), my recovery has returned to the normal track. The residual pain is normal. Tuesday's bronch came back with NO REJECTION. And after a pre and post total of 113 sessions of rehab, I have said my good-byes. It is time to go home.

Back in undergrad, I did the sound design for a children's musical called Conestoga Stories. I don't remember any of the songs but one - and the chorus only at that:

Packing up my Conestoga
What'll I take with me?
Packing up my Conestoga
taking my life's necessities..

It is a song of leaving, with a little loss and grief at what's being left behind, while hopeful for a better future down the trail.

And so the van is packed and tomorrow Mom and I will move me back to Brooklyn. It is with mixed feelings that I leave Durham. With my own health in hand, Piper back in Denver, and Denise at least out of the hospital and back in rehab, I have enough closure to this process to leave peacefully and gladly.

But had you asked me seven months ago if I would feel the little pains I do at leaving, ripping out the roots that have surprisingly grown here, I would have thought you silly. But now, with all that's transpired, I know I leave a significant part of my heart here in Durham and around the country, in the care of my transplant friends. I've not only made lifelong friends, but new love has sprouted, new favorite hangouts gained, new feelings of deep indebtedness to the team that saved my life, have all grown. I also take with me with the memory of Jeannette. And if I can be so honest, there is a new lady at rehab who looks almost exactly like her, save for a 15 pound difference. Every time I see her, it just kills me.

My life's necessities aren't all packed in that van. Some have tumbled on to their own homes, some remain behind in rehab, some in the hospital, one remains behind to finish her degree.
Going home to New York won't be the same; not just because I must relearn city life as an immunosuppressed patient, but because the dust and pollen and seeds of Durham will come with me. The smiles and sunshine and sweet-tea. The crack of a Bulls' bat, the sound of the fountains in the lake outside my window, the freshness of North Carolina air after a rainstorm, the pleasurable work on the American Tobacco Trail all sticks with me. And I'll gladly take it with me.

Today, I was reminded that no matter where we tumble, there comes a time of rest, when Spring comes and we are reborn and despite ourselves, we put down roots. It's time for me to pull up again and tumble on, but not unchanged - altered and affected in ways I didn't expect, but that I needed like a Spring rain.

It does get better.

Post transplant day 109; pulmonary rehab #55.

Well, I'm almost 15 weeks out and I guess it's time for an update.  Things have changed recently and it seems like a new phase of recovery really has begun.

For one thing, last week I experienced my first couple of days since long before transplant that I just felt good, physically. Sure, it took a little caffeine, but I finally feel GOOD. My pain level has generally dropped to zero, aside from some infrequent twinges along the incision.  I've DC'd the oxy and tramadol and use tylenol only for the occasional aches and pains that come at my age.

Mentally, I don't feel as good.  For the first time in my life, I have depression.  It isn't that I'm not counting my blessings, believe me, but that isn't enough sometimes; and I'm fortunate that I know enough about depression to recognize the signs of it.  I asked my coordinator for some help and I'm on a low dose of an antidepressant.  It has helped.  I'm not swinging from the trees, but I'm functional again.  This is very common post-transplant, but I'm still surprised to be dealing with it.

Speaking of meds, many of the ones I was on right after transplant have been DC'd, though I'm on a slew of new ones.  I'm currently at 36 pills per day, not counting the enzymes, which adds another 10-15.  I have 22 meds and supplements active and another dozen in reserve in case they're activated.  The regimen is constantly changing as my needs change.  Oddly enough, part of my roster includes two different anti-epileptics, one meant to control a long-standing muscle spasm problem that got worse after transplant and was part of of why I couldn't sleep and the other to possibly control the prograf shakes.  It's only been a couple of days, so we'll have to see how things go.  I'm also on two blood pressure meds.  Just can't seem to get those numbers to come down.  Again, these problems are very common after transplant.  I haven't been able to surprise my doctor with anything new.

I'm physically getting stronger, lifting almost as much as I was pre-transplant and definitely able to walk farther, faster.  In fact, Friday I was finally able to get in a run interval on the treadmill of a full five minutes!  I followed that up with three more intervals totaling another five minutes, meaning half of my workout was jogging.  I think I can go further next week - at least Monday and Tuesday before my sinus surgery.

And that's what's next:  a sinus surgery that will leave me in a lot of pain for a while, but hopefully will clean out the likely source of my chest infection.  This is a common surgery for CFers, both pre- and post-transplant.  But this is my first and I'm somewhat nervous.  Of course, my stomach surgery two weeks later will mess me up even worse.  The Nissen fundoplication is not for my stomach's sake, actually, but to protect my lungs from my stomach.  I'll have a hard time eating enough to keep up my weight for about a month, plus there will be servere weight restricts on how much I can lift, which will make moving strategically challenging.  Fortunately, I'm moving only one piece of furniture and the bike, which I can put in the van before surgery.  I may need some help unpacking when I get to New York.  The rest of my effects, I'll pack in many small boxes to keep each one under ten pounds.

Finally, my romantic life is looking good, for the first time in a long time.  I'd forgotten how nice it can be.  April is a fine girl and we keep finding things in common and points of mutual interest. 

So that's where I am.  Mentally ready to return to New York, but held hostage here by Duke until we wrap up these secondary, but necessary, surgeries.  Physically, I'm enjoying what feels like a huge step forward, though it is still tiny compared to where I was two or three years ago. Socially, blessed with a girlfriend who understands me on levels nobody else in my life can.  Today I am reminded that it does get better.