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."


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.

Taking stock at 100 days.

Post-transplant day 100; rehab #50.  Taking stock.

I don't have any deep thoughts today.  I've just been ruminating over where I've been these last 100 days and how far I have yet to go.  It is an amazing coincidence that my email started filling up again with subway service alerts today.  I had turned these off exactly six months ago; shortly before moving to Durham.  I'd figured six months should be more than enough. 

Well, it was enough to get listed and transplanted and even recover to - what? about 85% functional status.  But it hasn't been long enough to get me OUT OF DURHAM.  And that is the sore point in all of this.  There were a lot of things that could have been done differently and I could have been gone by now, or at least been packing up this next week.  (I acknowledge that getting sick right in the middle of a clinic visit is almost certainly going to set anybody's going-home timetable back.)  But I surely thought that by 100 days post-transplant, I'd be home again.

I'll admit this setback has affected me more than it probably should have.   I feel marginally better after a long conversation wtih Piper Beatty today, who once again saves my sanity by showing me that what I'm experiencing is well-trodden transplant territory.  These last 100 days - hell this whole last couple of years - has been made so much easier for having her counsel.  I can't imagine how people go through this alone and without the benefit of an experienced guide.

What I've accomplished in 100 days is reasonable.  Not everybody is able to jog, ride a bicycle, and do pull-ups and push-ups after 100 days.  Mostly, we still feel like hell, even if its a better hell than the first days and weeks right after our surgery.  What I HAVEN'T accomplished in 100 days weighs on my mind.  I still can't jog a continuous mile, haven't returned home, can't lift what I could pre-transplant.  Walking any distance still involves a new kind of effort (though once I get going, I can go quite a long time).  People will tell me I should be satisfied with my progress so far; but if satisfaction with myself were in my nature, I wouldn't have achieved what modest marks I have at this point.  I'm always pushing.  Now, I never thought I'd be at 100% by 100 days, but I guess I thought I'd be a little further along than I am. 

The past 100 days, though, has been primarily filled with pondering the source of my lungs - my donor and savior, that wonderful anonymous soul.  What must his family be going through?  Soon, at the 6-month mark, I will write a letter to my donor's family; a letter of thanks and of pride.  I hope to be able to tell them they can be proud of their loved one, for having passed on beautiful lungs and that they can be proud of the recipient, for having used this gift to its maximum potential.  I want to be able to write of  wonderful adventures, such as the upcoming 5 Boro Tour and the Long Reach Long Rider's annual ride.  I'll write of surviving a horrible disease and of recovering swiftly after transplant.  And I'll write of finding a girlfriend, returning home, returning to work, and trying to live a life for two.

What will the next 100 days bring?  I'll make plans, but I'll make no bets.  Life is too strange and unpredictable right now.  But I hope the next 100 is even better.  Today I am reminded that transplant patients don't set the timetable, that patience is a virtue, and that any 100 days now is 100 more days than I had on the clock.