Post transplant day #491. Breathing easy.
Today, April 15th, is a momentous day, and will always be so. In the national brain, not only is it the ever-grim Tax Day, but it is also the much more grim anniversary of the Boston bombings. In one week, Dzhokar Tsarnaev will be sentenced, most likely to death. In the national mind, this is justice. (As a side note, I find it exquisitely ironic that his brother, Tamerlan, seemingly the mastermind behind the bombings, was killed not by police bullets, but because his own brother RAN OVER HIM in an attempt to escape. Not once, but TWICE. Thanks, bro.)
But in my brain, April 15th will forever be the anniversary of one of my dear friends and cysters, Ellie Alexandra Levy, getting her second double-lung transplant. It was the beginning of a period of time in which, after extensive recovery, Ellie finally breathed easily, without assistance, without oxygen, without coughing. And I can tell you from experience, it's those first weeks free of all that, able to take deep breaths and laugh with abandon, that feel like the greatest mitzvah our donor could do us. Extended life is wonderful, but just finally being able to draw breath without effort is in some qualitative way the more precious gift.
In the CF community, when asked what it's like, we sometimes challenge the questioner to breathe through a straw for several minutes, until they can't take it anymore. That's like the restriction we experience daily and forever -- until a day like today. Until a hospital says yes, a donor's family says yes, a recipient says yes please. All the struggle to breathe and stay alive gathers up into a single moment in a pre-op bay, like a firework waiting to explode, until the word comes back that the lungs are good. Then a beautiful chrysanthemum of fire blooms, sending nurses and doctors scuttling every which way, and the chrysanthemum expands and expands over time through surgery, ICU, stepdown, recovery, and finally -- as the chrysanthemum fades from the night sky leaving it as clean as it was before -- a life regained with effortless respiration.
Today, as I sit here sipping coffee and taking deep and regular breaths, my chrysanthemum long since seen and applauded, confident that my exercise will be harder on my legs than lungs, and once again able to fully enjoy my life, I am reminded that Breathe Easy is not just a send-off salutation for the dead. It is a wish for the best possible outcomes, as simply and sincerely said as Happy New Year to the living, whether respirationally challenged or not. For Ellie, and Heather and Jerry and Katie and Piper and April and Michael and Eryne and Jen and Denise and all of us pre and post, living or no, on April 15th my day-long prayer is: Breathe Easy.
Showing posts with label life after transplant. Show all posts
Showing posts with label life after transplant. Show all posts
April 15, 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..."
September 10, 2014
The Shock of Reality
Post-transplant, day 274, 9 months. The shock of reality.
Holding my head in my hands, I thought to myself, "This is never going to end, is it? I am a forever patient." It was, in that moment, a horrible thought.
I knew this already though. Pre-transplant, I was told time and again by transplanted CF warriors that transplant isn't a cure, that it is trading one disease for another. I knew it and accepted it, intellectually, just as I knew I'd need CF care my entire life, before my lungs went bad. But these last few months away from Durham, leading an almost normal life again, I had been lulled into a false security. My view of my own health included a false facade of the kind of invulnerability that good health lends a person. I'd worked to build good sanitary habits so as to avoid picking up germs from other people and had, so far, not gotten sick.
The first hint that this newfound health was not what I thought it was came on my motorcycle trip. It was far harder to manhandle the bike then I remembered, and my best friend even commented that I am weaker than before. And then, not too long after that, I noticed my cough increasing and a slight drop in my home PFTs. I had to call my coordinator and start oral antibiotics.
The facade took a big hit when I was admitted to the hospital. In a few short hours, I went from feeling great to feeling like I might die that very night. I went from being mobile and catheter-free, to having two peripheral IVs, one central line, and a Foley in me and frankly immobilized in a hospital bed in ICU. My bronch earlier that day had stirred up infection. I went septic and my blood pressure plummeted.
My ICU stay was short, but then I spent the next six days on 7800. The doctors were trying to stabilize my blood pressure, which was hitting both extremes every day, and figure out the right antibiotic cocktail. It was enough time that they got preliminary results on the cultures taken during the bronch and also got the pathology report back: no rejection! That was a welcome bit of good news. I ended up staying over the Labor Day weekend primarily to wait for the IR docs to get back so I could get a PICC or Hickman. When I found out on Friday that I wasn't going to be released, and that my central line wouldn't come out 'til Tuesday at least, I just groaned and slumped back in my chair. Although my good friend Ellie Levy was also in, just two doors away, and we entertained each other, I just didn't want to be there. Nobody wants to be in the hospital.
I've been in the hospital before, and for longer. But what got me about this was that this is an admission I just wasn't expecting. And for that, it was quite upsetting. I suppose I should be thankful it was only six days and that my problems were handily treated. But as so many of my transplanted friends can affirm, admissions are a reversal of fortune that are sometimes harder mentally than they are physically.
And so I spent my nine-month lungiversary on three antibiotics, delivered three different ways. Cipro orally, tobramycin by inhalation, and cefepime by IV. These are old CF exacerbation treatment tactics. I knew... I KNEW... that at some point, these treatments would be needed. I had just hoped to put it off longer. And yet...as in the days pre-transplant, I do my treatments and then go to work. In this beautiful blue September, I continue to balance work, social, and medical life, just as I always have...
Today, I am reminded that I am in a race which has no finish line. And the best way to survive it, is to take it slow and steady, maintain my discipline, adapt as needed, keep on keepin' on.
Holding my head in my hands, I thought to myself, "This is never going to end, is it? I am a forever patient." It was, in that moment, a horrible thought.
I knew this already though. Pre-transplant, I was told time and again by transplanted CF warriors that transplant isn't a cure, that it is trading one disease for another. I knew it and accepted it, intellectually, just as I knew I'd need CF care my entire life, before my lungs went bad. But these last few months away from Durham, leading an almost normal life again, I had been lulled into a false security. My view of my own health included a false facade of the kind of invulnerability that good health lends a person. I'd worked to build good sanitary habits so as to avoid picking up germs from other people and had, so far, not gotten sick.
The first hint that this newfound health was not what I thought it was came on my motorcycle trip. It was far harder to manhandle the bike then I remembered, and my best friend even commented that I am weaker than before. And then, not too long after that, I noticed my cough increasing and a slight drop in my home PFTs. I had to call my coordinator and start oral antibiotics.
The facade took a big hit when I was admitted to the hospital. In a few short hours, I went from feeling great to feeling like I might die that very night. I went from being mobile and catheter-free, to having two peripheral IVs, one central line, and a Foley in me and frankly immobilized in a hospital bed in ICU. My bronch earlier that day had stirred up infection. I went septic and my blood pressure plummeted.
My ICU stay was short, but then I spent the next six days on 7800. The doctors were trying to stabilize my blood pressure, which was hitting both extremes every day, and figure out the right antibiotic cocktail. It was enough time that they got preliminary results on the cultures taken during the bronch and also got the pathology report back: no rejection! That was a welcome bit of good news. I ended up staying over the Labor Day weekend primarily to wait for the IR docs to get back so I could get a PICC or Hickman. When I found out on Friday that I wasn't going to be released, and that my central line wouldn't come out 'til Tuesday at least, I just groaned and slumped back in my chair. Although my good friend Ellie Levy was also in, just two doors away, and we entertained each other, I just didn't want to be there. Nobody wants to be in the hospital.
I've been in the hospital before, and for longer. But what got me about this was that this is an admission I just wasn't expecting. And for that, it was quite upsetting. I suppose I should be thankful it was only six days and that my problems were handily treated. But as so many of my transplanted friends can affirm, admissions are a reversal of fortune that are sometimes harder mentally than they are physically.
And so I spent my nine-month lungiversary on three antibiotics, delivered three different ways. Cipro orally, tobramycin by inhalation, and cefepime by IV. These are old CF exacerbation treatment tactics. I knew... I KNEW... that at some point, these treatments would be needed. I had just hoped to put it off longer. And yet...as in the days pre-transplant, I do my treatments and then go to work. In this beautiful blue September, I continue to balance work, social, and medical life, just as I always have...
Today, I am reminded that I am in a race which has no finish line. And the best way to survive it, is to take it slow and steady, maintain my discipline, adapt as needed, keep on keepin' on.
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