Post-transplant day #500. 100%
I had a great checkup yesterday, 499 days after my transplant. Several tests and several doctor consults. The upshot is that I haven't been this healthy in many years. My PFTs, the OFFICIAL ones, not the ones off my SpiroPD, have significantly improved: I'm at 96% FEV1 and 96% FVC. I am so close to 100% on the numbers that it doesn't even matter. Functionally, I'm there. 100% operational. Green lights across the board. Sure, it could all come crashing down around my ears in a week, a month, a year; it's a constant, but managed, risk. That's transplant life.
On the day-to-day level, 100% means I can work efficiently throughout the day, moving from one task to another, without the huge amounts of rest I used to require between every task, even mental ones. It means I have energy enough at the end of the day to go to the climbing gym for an hour or go jogging for 30 minutes. It means I have enough energy and strength to break in my new motorcycle with a 1500 mile trip. It means that while I'm in the Triangle dealing with medical stuff, I still have the time and energy to give my girlfriend her due attention, go out and catch up with friends, take my Mom to an appointment, work on a refinance, and start a light plot for the next play I'm lighting. All while living out of a T-bag.
What 100% means is that I can once again juggle all that I need to. It's delicious. I hope it lasts.
#500 has turned out to be memorable and special without forcing it, beginning with a long ride up to Winston-Salem last night (with April and Karen leading in April's car) to meet my friends Greg Williams and Alice Neff. We ate at Bib's BBQ - an adventure in itself - and talked over old transplant topics and where to go from here. As a founding member of the LRLR, this year's ride is the next Big Thing on my list.
This morning started with phone calls and texts at 8 in the morning and hasn't let up. But I got to start things off right with a nice breakfast at one of my favorite breakfast places, Another Broken Egg, with sweetie and my friends Pete and Jen Eisenmann. They have just finished moving to this area in advance of Jen's inevitable final decline and lung transplant. It gives her time to focus on her health (she's already back to using oxygen part time instead of full time), get to know the various CF and transplant programs in the area, and make a new home in a very hospital part of the country. I've broken bread with Jen before, but this was my first time meeting Pete, who has been an avid supporter of my athletic efforts over the years. Lots of coffee and lots of laughter. Quite the morning!
A couple hours later and I was opening the door to a mortgage closer, a notary public who makes sure everything gets signed. I think I wrote the long form of my name a couple hundred times. But it is done. I am refinanced at a lower rate and saving hundreds on each month's payment. It takes being at 100% to even start a refinance, much less hang on through one.
To cap off my day, sweetie and I rode over to Lowe's to have a copy of a key made. That's right: April got on the back of my bike, suitably attired in my leather jacket, full-face helmet, and gloves. Coming back, she tried my half-helmet and liked it more. This outing was her first time ever on a motorcycle. She's already looking at changes I could make to increase her comfort! I think the bug has gotten suitably under her skin.
So it is that on day #500, I felt the arms of my love wrapped around my waist as we rumbled through the pleasant outskirts of Raleigh. It's all I ever wanted, really.
Is the long nightmare over? While struggling along and enduring transplant, I often had to remind myself that "this too shall pass." Today, with spring's bright dawns and a bright future ahead of me, I am reminded that ... well, it has. And while this pleasant state may also change, will change....must inevitably change, it's worth breathing in the air and turning my face to the sun while I have the chance.
Showing posts with label motorcycling. Show all posts
Showing posts with label motorcycling. Show all posts
April 24, 2015
April 4, 2015
Waking the dead
Post-transplant day #480. Waking The Dead
Coming back to life has been a long haul. It is more than rehabbing the body; it also involves rehabbing one's life.
As I slowly deteriorated in the years before transplant, I had to cease activities that I loved, and felt like I was dying piece by piece; my corporeal death would merely be the last death of many. First I couldn't climb anymore. Then I couldn't motorcycle. I stopped writing for Thunder Press. I quit teaching at FIT. Then running became impossible, and finally cycling. It could have been worse: I could have gotten so weak that I couldn't walk anywhere or climb any stairs.
The transplant itself, while not uncomplicated, is a fairly straightforward event. A sort of K/T Boundary separating the Before from the After with a traumatic and (systemically) calamitous event.
Once the damage is done, the body slowly comes back to life and the mind follows. I have remarked in this journal before on some of the major milestones: My first night of good sleep, my first run, my first miles of cycling. Then, back in NY, my return to work, both design and tutoring; I picked up climbing again a couple of months ago, reveling in an unexpected strength and endurance, even if it's obvious I'm out of practice.
Last summer, I borrowed a buddy's Sportster 883 to participate in the Long Reach Long Riders ride. It was a brief return to motorcycling. Sort of a litmus test as to whether this was still for me. Was I still interested? Could I still handle the rigors of biking? It was obvious I was far weaker than I used to be and I think that contributed to my parking lot drop that caused my ankle injury.
But now, after another nine months of steadily growing stronger, I have brought home a new motorcycle, a Harley Davidson XL1200T. I feel I'm once again a biker.
Some of the neighbors don't like Harleys. They think they're unnecessarily loud. Strictly speaking, that's not true - from the factory they are fairly well muffled and have a comforting rumble. But most people change pipes or at least the mufflers in a bid for more power. They change the air cleaner and the EFI mapping, too; altogether a change known as the Stage I conversion. These pipes tend to be ... more open-throated. A wise biker chooses a pair of mufflers with a balance of power and silencing. I hope I chose well. I'm not trying to be a bad neighbor, honestly.
Now, my first bike had a name, which she earned after my first and only accident on that bike. "Roxie." (After the murderess Roxie Hart, of course.) Many people name their vehicles. Heck even my bicycles have names, which they whispered to me after a period of time.
I wasn't going to name this bike yet. Wanted to break her in and see what bubbled up. But something happened two days ago, when I signed the final paperwork at the dealership. I got to talking to my dealer about why I'd been gone from biking for so long and another dealer overheard me talking about my transplant. He asked what organs I'd gotten and said double lungs. He then asked a question most people don't usually get around to asking at Question #2: what was the underlying condition? I told him about my CF. Shortly after he brought a young saleswoman over from the merchandise side of the store, who introduced herself as Katie. She is young, owns her own Sportster...and has CF! We stood a respectable distance apart. She sees my old CF doc. And she is far, far from transplant. She could be my age or older before she'll need one.
But just meeting this young woman made me aware of the nerve-like connections throughout our two communities, CF and bikers. It is bucket-list material for a lot of transplanted CFers to get a Harley or get back on their old ones. And Katie and I had both been friends of Brian Jonson, who founded the CF Riders. Perhaps it is our burden to take up - we who are living on after him. We have a lot more to talk about in the coming months, but something about her reminded me of so many of the other fresh-faced CF youths. Those who you just want to reach out and hug and say "I'm so thankful you're alive!"
On the way home, I thought about that encounter and about the CFers I'd never be able to reach out and hug again. I looked in my little bag of goodies the dealership had given me and there was an angel's bell, given to me by my dealer. (You can't buy these for yourself.) "I'll certainly need an angel watching over me as I enter this next phase of life," I thought. And it became clear I had to name her after a CFer. The name of my new bike had suggested itself to me.
But dare I name a bike after a dead woman? I mean it as token of respect; a pledge to never forget. Some people get vinyl lettering put on their cars, trucks, or bikes for deceased family members, or get friends portraits airbrushed on their tanks or tattooed onto their skin. Isn't naming your bike for that person as basic a way of ensuring their immortality as any of those other rituals? After all, we name our KIDS after dead relatives; this could hardly be more creepy. Could it? Fuck it; I stopped worrying about it.
And so it is that yesterday afternoon I received delivery of my new baby, Ellie. This afternoon, Ellie and I will go for a long spin together, given decent weather. We will start to get to know each other. And if there are angels, I hope the real Ellie will be riding along, with her arms wrapped around my waist for safety.
Tonight I am reminded of the religion of the road; the hundred little practices and superstitions that bikers follow, hoping to ward off bad luck and bad weather. The blessing of the bikes. The prayer circle many groups engage in each morning before hitting the road. And I promise, to my donor, my friends, and my family, that my most reverential prayer for blessings and my most sincere promise to drive my safest will be encompassed each time I breathe my bike's name: "Ellie..."
Coming back to life has been a long haul. It is more than rehabbing the body; it also involves rehabbing one's life.
As I slowly deteriorated in the years before transplant, I had to cease activities that I loved, and felt like I was dying piece by piece; my corporeal death would merely be the last death of many. First I couldn't climb anymore. Then I couldn't motorcycle. I stopped writing for Thunder Press. I quit teaching at FIT. Then running became impossible, and finally cycling. It could have been worse: I could have gotten so weak that I couldn't walk anywhere or climb any stairs.
The transplant itself, while not uncomplicated, is a fairly straightforward event. A sort of K/T Boundary separating the Before from the After with a traumatic and (systemically) calamitous event.
Once the damage is done, the body slowly comes back to life and the mind follows. I have remarked in this journal before on some of the major milestones: My first night of good sleep, my first run, my first miles of cycling. Then, back in NY, my return to work, both design and tutoring; I picked up climbing again a couple of months ago, reveling in an unexpected strength and endurance, even if it's obvious I'm out of practice.
Last summer, I borrowed a buddy's Sportster 883 to participate in the Long Reach Long Riders ride. It was a brief return to motorcycling. Sort of a litmus test as to whether this was still for me. Was I still interested? Could I still handle the rigors of biking? It was obvious I was far weaker than I used to be and I think that contributed to my parking lot drop that caused my ankle injury.
But now, after another nine months of steadily growing stronger, I have brought home a new motorcycle, a Harley Davidson XL1200T. I feel I'm once again a biker.
Some of the neighbors don't like Harleys. They think they're unnecessarily loud. Strictly speaking, that's not true - from the factory they are fairly well muffled and have a comforting rumble. But most people change pipes or at least the mufflers in a bid for more power. They change the air cleaner and the EFI mapping, too; altogether a change known as the Stage I conversion. These pipes tend to be ... more open-throated. A wise biker chooses a pair of mufflers with a balance of power and silencing. I hope I chose well. I'm not trying to be a bad neighbor, honestly.
Now, my first bike had a name, which she earned after my first and only accident on that bike. "Roxie." (After the murderess Roxie Hart, of course.) Many people name their vehicles. Heck even my bicycles have names, which they whispered to me after a period of time.
I wasn't going to name this bike yet. Wanted to break her in and see what bubbled up. But something happened two days ago, when I signed the final paperwork at the dealership. I got to talking to my dealer about why I'd been gone from biking for so long and another dealer overheard me talking about my transplant. He asked what organs I'd gotten and said double lungs. He then asked a question most people don't usually get around to asking at Question #2: what was the underlying condition? I told him about my CF. Shortly after he brought a young saleswoman over from the merchandise side of the store, who introduced herself as Katie. She is young, owns her own Sportster...and has CF! We stood a respectable distance apart. She sees my old CF doc. And she is far, far from transplant. She could be my age or older before she'll need one.
But just meeting this young woman made me aware of the nerve-like connections throughout our two communities, CF and bikers. It is bucket-list material for a lot of transplanted CFers to get a Harley or get back on their old ones. And Katie and I had both been friends of Brian Jonson, who founded the CF Riders. Perhaps it is our burden to take up - we who are living on after him. We have a lot more to talk about in the coming months, but something about her reminded me of so many of the other fresh-faced CF youths. Those who you just want to reach out and hug and say "I'm so thankful you're alive!"
On the way home, I thought about that encounter and about the CFers I'd never be able to reach out and hug again. I looked in my little bag of goodies the dealership had given me and there was an angel's bell, given to me by my dealer. (You can't buy these for yourself.) "I'll certainly need an angel watching over me as I enter this next phase of life," I thought. And it became clear I had to name her after a CFer. The name of my new bike had suggested itself to me.
But dare I name a bike after a dead woman? I mean it as token of respect; a pledge to never forget. Some people get vinyl lettering put on their cars, trucks, or bikes for deceased family members, or get friends portraits airbrushed on their tanks or tattooed onto their skin. Isn't naming your bike for that person as basic a way of ensuring their immortality as any of those other rituals? After all, we name our KIDS after dead relatives; this could hardly be more creepy. Could it? Fuck it; I stopped worrying about it.
And so it is that yesterday afternoon I received delivery of my new baby, Ellie. This afternoon, Ellie and I will go for a long spin together, given decent weather. We will start to get to know each other. And if there are angels, I hope the real Ellie will be riding along, with her arms wrapped around my waist for safety.
Tonight I am reminded of the religion of the road; the hundred little practices and superstitions that bikers follow, hoping to ward off bad luck and bad weather. The blessing of the bikes. The prayer circle many groups engage in each morning before hitting the road. And I promise, to my donor, my friends, and my family, that my most reverential prayer for blessings and my most sincere promise to drive my safest will be encompassed each time I breathe my bike's name: "Ellie..."
July 5, 2014
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 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."
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