If you have CF, you're most likely a little bit of a druggie. Or at least, here's hoping you are, because drugs and pills and medicines and pharmacies are, let's face it, just a way of life for most of us. Our pill organizers and neb cups runneth over, to borrow a phrase, and for the most part that's a very, very good thing. After all, that life expectancy doesn't just keep increasing itself -- it's all thanks to developments and breakthroughs in the therapies and treatments we use to stay as healthy as we can for as long as we can, God and that pesky pseudomonas willing.
But what do you do when the "cure" becomes, well, not so curative? What happens when the options available to help keep you healthy suddenly turn on you, and you find yourself getting ill from the very weapons you use to combat the illness?
Fasten your seatbelts, ladies and gentlemen, because you're about to get on board that delightful little ride we call serum sickness. And just to warn you, things might get a little turbulent in here before it's over.
Serum sickness, for the blissfully uninitiated, is what happens when your body becomes ill in response to a drug used to treat an underlying condition. It's similar to a classic allergic reaction, only the symptoms are more immune-system based (so think fevers, feeling ill, swollen lymph nodes, nausea -- all the good stuff). And the treatment, as well, is similar to a classic allergic reaction, only you're dealing more with corticosteroids (hello, prednisone!) rather than, say, a quick dose of benedryl. In other words, it is not. fun. at. all.
For some reason or another I seem prone to serum sickness reactions, especially when it comes time for IV antibiotics. I used to only use tobra and cephalosporins whenever I needed a tune-up, and I noticed that I would often get fevers, vomiting, and general malaise within a few days of starting the drugs. This probably should have been enough to tip me off that something was wrong, especially when the fevers started creeping up toward the 103 range and the vomiting became a near constant issue, but in addition to my CF I seem to have a self-diagnosed case of "tough it out syndrome." Meaning that, since everyone knows IV antibiotics make you feel like you've been hit by a MAC truck for the first few days, and since I can only assume someone who had just been hit such a truck might experience fevers and difficulty holding down food, I decided pretty much unilaterally that what I was experiencing was "normal." So, while I never hid the symptoms from my doctor at the time, I also never really expressed just how serious these flu-like bouts of illness really were. And because I would finish the IVs and immediately start feeling better -- no more vomiting AND no more stupid CF infection! -- I just assumed we had to be doing something right. All of which combined to make it several years (and a fever of over 104) before I actually voiced the somewhat perplexed opinion that something maybe wasn't so normal about all of these issues, at which point I was immediately removed from the cephalosporins and began discovering that medicine could actually make you feel better -- without first making you feel like you were dying. Call it a revelation, call it an epiphany, call it whatever you like. I just called it a major relief.
Unfortunately as my has CF progressed, so has the list of drugs that cause these types of reactions. It now includes zosyn (antoher previous go-to drug) and, in what has to be one of the most ironic twists of my disease so far, even merrem. I say ironic because I actually participated in a study at one point at my pediatric hospital to see if IV merrem was effective with CF infections. I was lucky enough to get the drug at that point rather than the placebo, and my PFTs skyrocketed from a baseline of about 85% to over 100% for the first time since I was a young child. My doctor immediately declared merrem our "ace in the hole" and from then on I had visions of merrem as a miracle drug, ever at the ready to swoop down and kick some serious PA (pseudomonas ass). More recently, though, my knight in shining IV armor has started letting me down, and although I still call him into battle every so often, I've started having to seriously monitor his behavior with -- yep, you guessed it -- more prednisone. It's a tricky situation for sure, and one which constantly challenges both my doctor and me to walk the line between controlling my CF infections and controlling the reactions that require more drugs that are, themselves, not so good for the body.
But hey, nobody ever said CF was easy, right?
I guess all of this is a really long way of explaining some of what happened yesterday at my transplant clinic appointment. Unfortunately, we got some startling news regarding my position on the list -- news that reminded us all, once again, that this is a delicate, frustrating, ongoing, and most of all unpredictable process. And there's no way for anyone to change that fact.
I know transplant is the right option for me given my disease progression and my personal belief system and philosophy. I also know that getting new lungs, like living with CF, is never easy. No one ever promised it would be -- quite the opposite, actually, as we were told over and over again by friends, doctors, and just about everyone else who's ever "been there" that the journey would be, at times, grueling -- and maybe it shouldn't be anyway. Maybe it's necessary to walk through some fire in order to truly appreciate just how amazing this gift from a stranger willing to rise from the ashes of personal tragedy and share his/her life with another really is. Maybe you need a little fire and brimstone to really grasp the miracle that is transplant. Maybe.
Or maybe not.
Because even though no one promised it would be easy, the two words that popped into my mind yesterday as I packed up to leave my center were simple and all too familiar to me as a CF patient: serum sickness. By which I mean that we have reached a point in this transplant odyssey where the process itself has become draining, leaving all of us feeling just a little bit sick and wondering if what we're going through is, in fact, "normal." Only this time there is no prednisone, there is no other antibiotic waiting in the wings, and there is no way to simply check into the hospital for a quick desensitization. This time we're left to find our own way off the ride and back on track to the healing process, and let me just say that the path is definitely not a clear one.
But you know what, that's okay. I'm actually okay with all of this right now, maybe even more okay than I was a few days ago. Because just like that moment when I finally realized that IV antibiotics don't have to come with a side of spiking fevers and uncontrollable nausea, I feel as though yesterday was a bit of an awakening for me. An awakening into a world where it's okay to talk about the fact that transplant isn't easy; okay to have long, drawn-out conversations with my CF doctor about what's truly going on in my life and my lungs; and okay to recognize that there is, in fact, a balance between being grateful for the "cure" and being aware that sometimes even the best things we can do for our bodies have unpleasant side effects.
Call it an unasked for lesson, but it's still, once again, a huge relief.
About Me
- Piper
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
Showing posts with label Waiting. Show all posts
Showing posts with label Waiting. Show all posts
Friday, June 11, 2010
Monday, June 7, 2010
Sam, I Am
I've spent some time (but not nearly enough) on this blog telling you all about how awesome my family is. In case you haven't quite caught on yet, I'm fairly certain that without their unflagging support I would be off living in a ditch in some highly desolate area, clutching my (evil) home PFT monitor in one hand and mumbling "I don't need no stinkin' lung transplant" over and over under my breath while attempting to borrow IV supplies from the friendly junkie down the way. An exciting career choice, sure, but not one that I feel would be particularly productive for me at this point in my life. Suffice it to say, then, that support systems are key when it comes to preparing for a double-lung transplant, and I'm happy to report that I have been blessed beyond measure in that department.
There is, however, one critical member of my team who really never receives (or asks for) much recognition. This is a guy who goes by many names (or, rather, many nicknames) and wears many hats in our household. He's on full-time cuddle and distraction duty, pulls his shift as personal exercise trainer, and makes it his personal mission to make sure I replace my Pari cups on time by periodically chewing the old ones into a slobbery mess of unrecognizable plastic -- purely for my benefit, of course. He's also the guy who officially reached adulthood this Sunday by celebrating his landmark second birthday. Congratulations, Sammybear. You've come a long way, baby.
Yep, it's beyond doubt that Sampson forms a key part of Team Piper, and I guess that's hardly surprising given his sweetness, loyalty, and, well, really, really soft fur. As a friend told me the other day, "happiness is a warm puppy." Agreed.
What is slightly surprising, though, is how this little man came to join my squad in the first place. In august of 2008, I had just recently completed the vast majority of my evaluation for transplant. Told by the tx team that I was too healthy to be immediately listed but would need to be followed closely, I returned home, started this blog, and began the long (and ongoing) process of teaching myself how to wait (or, as was the case at that point, how to wait to wait). I entered the transplant odyssey cautiously optimistic, but also very much aware that it was the start of a new stage in my disease and in my life. And it was most likely this awareness that caused my to put my plan to get a puppy on the back burner for the time being. Because surely, I reasoned, it's far better to wait until after the major surgery that can't be scheduled in advance (and the waiting for the major surgery that can't be scheduled in advance) to make a major life decision like adopting a dog. After all, timing is everything in this game, right?
Right.
Fast forward two months to October 2008. I spent a beautiful day tooling around the Museum of Modern Art with a close friend and, upon leaving, we happened to see a small shih-tzu and his owner hanging around on the sidewalk. This led to a conversation about my decision not to get a dog right away, and also to my emphatic declaration that, if I were to get a dog, it "would definitely not be a shih-tzu!" (As an aside, I don't mind admitting that I suffered for years from PSTSD (Post Shih-Tzu Stress Disorder) thanks to a very aggressive and deceptively named little terror called "Puppy.") I figured that my authoritative tone and mature stance on timing settled the issue pretty conclusively: no dog right now, and no shih-tzu ever.
I adopted Sampson, the shih-tzu mix, the next day.
Yes, really.
Turn out that while I was boldly daring to set the course for my own life (or at least insofar as furry companions were concerned), God and my sister had other plans. And these plans apparently involved waking me up from my Sunday afternoon nap to rush up to the West Village, where my sister had already found and fallen in love with the puppy she pre-emptively took to calling her "nephew." My role in this play, it seemed, was simple: show up, adopt the dog, and welcome into my life a new era of chaos, housebreaking, chewed up medical equipment, and unconditional love.
In the slightly over one and a half years since Sampson joined my family and my support squad, I've finished my transplant evaluation, battled a blood infection and a seriously ridiculous port-removal saga, been actively listed for transplant, waited nine months on the list (and counting!), had over 15 rounds of IV antibiotics, and survived several dry runs and one crazy "damp run" for new lungs -- all with my amazing doctors, my incredible family, my awesome friends, and my wonderful puppy by my side.
Wow.
It's been a long journey so far, and I have every reason to believe that will get even more intense before it's over, but it has also been worth every mangled neb cup, chewed through power cord, xopenex rocket inhalers, and every moment of life and breath in between.
Happy birthday Sampson-bear!
- Posted using BlogPress from my iPhone
There is, however, one critical member of my team who really never receives (or asks for) much recognition. This is a guy who goes by many names (or, rather, many nicknames) and wears many hats in our household. He's on full-time cuddle and distraction duty, pulls his shift as personal exercise trainer, and makes it his personal mission to make sure I replace my Pari cups on time by periodically chewing the old ones into a slobbery mess of unrecognizable plastic -- purely for my benefit, of course. He's also the guy who officially reached adulthood this Sunday by celebrating his landmark second birthday. Congratulations, Sammybear. You've come a long way, baby.
Yep, it's beyond doubt that Sampson forms a key part of Team Piper, and I guess that's hardly surprising given his sweetness, loyalty, and, well, really, really soft fur. As a friend told me the other day, "happiness is a warm puppy." Agreed.
What is slightly surprising, though, is how this little man came to join my squad in the first place. In august of 2008, I had just recently completed the vast majority of my evaluation for transplant. Told by the tx team that I was too healthy to be immediately listed but would need to be followed closely, I returned home, started this blog, and began the long (and ongoing) process of teaching myself how to wait (or, as was the case at that point, how to wait to wait). I entered the transplant odyssey cautiously optimistic, but also very much aware that it was the start of a new stage in my disease and in my life. And it was most likely this awareness that caused my to put my plan to get a puppy on the back burner for the time being. Because surely, I reasoned, it's far better to wait until after the major surgery that can't be scheduled in advance (and the waiting for the major surgery that can't be scheduled in advance) to make a major life decision like adopting a dog. After all, timing is everything in this game, right?
Right.
Fast forward two months to October 2008. I spent a beautiful day tooling around the Museum of Modern Art with a close friend and, upon leaving, we happened to see a small shih-tzu and his owner hanging around on the sidewalk. This led to a conversation about my decision not to get a dog right away, and also to my emphatic declaration that, if I were to get a dog, it "would definitely not be a shih-tzu!" (As an aside, I don't mind admitting that I suffered for years from PSTSD (Post Shih-Tzu Stress Disorder) thanks to a very aggressive and deceptively named little terror called "Puppy.") I figured that my authoritative tone and mature stance on timing settled the issue pretty conclusively: no dog right now, and no shih-tzu ever.
I adopted Sampson, the shih-tzu mix, the next day.
Yes, really.
Turn out that while I was boldly daring to set the course for my own life (or at least insofar as furry companions were concerned), God and my sister had other plans. And these plans apparently involved waking me up from my Sunday afternoon nap to rush up to the West Village, where my sister had already found and fallen in love with the puppy she pre-emptively took to calling her "nephew." My role in this play, it seemed, was simple: show up, adopt the dog, and welcome into my life a new era of chaos, housebreaking, chewed up medical equipment, and unconditional love.
In the slightly over one and a half years since Sampson joined my family and my support squad, I've finished my transplant evaluation, battled a blood infection and a seriously ridiculous port-removal saga, been actively listed for transplant, waited nine months on the list (and counting!), had over 15 rounds of IV antibiotics, and survived several dry runs and one crazy "damp run" for new lungs -- all with my amazing doctors, my incredible family, my awesome friends, and my wonderful puppy by my side.
Wow.
It's been a long journey so far, and I have every reason to believe that will get even more intense before it's over, but it has also been worth every mangled neb cup, chewed through power cord, xopenex rocket inhalers, and every moment of life and breath in between.
Happy birthday Sampson-bear!
- Posted using BlogPress from my iPhone
Saturday, June 5, 2010
Birthdays and Cliches
There's an old cliche that claims that the more things change, the more they stay the same. Like most overused sayings, this one has more or less lost its meaning, at least when it comes to my own life anyway. Whenever some kind soul attempted to impart this particular piece of seemingly outdated wisdom on me I would simply smile, nod, and do my best to politely conceal my internal eyeroll. Because really, change is change, right? No need to get overly philosophical about the whole thing.
Tonight we celebrated my beautiful mother's undisclosed-number birthday (hint: she's older than me, which makes her at least 29). We did this by inviting a few friends here in NYC to a small but lovely little birthday dinner. And it might be worth mentioning that this dinner was held at the same restaurant we celebrated her birthday at last year, which was also the day she came to New York for a short visit and ended up leaving behind (temporarily) her husband, home, dogs, friends, and job for what is now a year-long trip and counting -- all for her daughter who suddenly needed more help dealing with end-stage cystic fibrosis.
Um, yeah, talk about a celebration of love.
I don't brag about my family often enough on this blog, honestly. I mean, sure, I might mention my father's crazy antics that keep us all laughing whenever he visits, or the fact that he's now racked up enough frequent flyer miles between Colorado and New York to take us all on a much-deserved vacation when this is all over. And I know I occasionally make reference to my sister's amazing talent, or the fact that she somehow manages to keep us (mostly) grounded even when we're stuck listening to drunk men in the local ER. I even think that I've touched on how grateful I am to my mom, who lives with me, helps me with errands and IVs and the boundless energy of my puppy (who we joke views her as his personal nanny), and accompanies me to every single appointment, even if it just means waiting in the waiting room for moral support. I say these things, of course, but I never really feel like I say them enough.
There wasn't a whole lot I could do today to make mom's birthday extra special. I just recently started a new course of IVs, which of course means I have an infection, and I spent most of the day coughing or sleeping, and trying to rest up for tonight. But I was able to go with her last night to the bakery to pick out some cakes (yes, she got two -- and I dare anyone to claim she's not entitled, although truth be told both were small and to share). I was able to put on a nice dress, wash my hair and make myself look somewhat pretty, and I was able to go out to a dinner that was all about her, exactly as it should be. In the grand scheme of things these small gestures don't feel like all that much for someone who everyday helps make sure I can breathe, get appropriate exercise, and have everything else I need to live as normal a life as possible under the circumstances. I know I could never repay that gift in a million years, but I'm happy that for tonight at least we were able to show mom a small piece of how amazing she really is.
And as for my gift for the evening, I think it came the second I looked around the table (in the same beautiful dining room we sat in a year ago tonight in what would become my mother's official "welcome to New York" dinner) and saw old Colorado friends, new NY friends, my sister, and my mother enjoying an amazing meal worthy of a one year anniversary and a older-than-28 birthday. Because if I had to surmise this past year in one single word it would probably be "change." We have struggled to find our footing, to hold onto our optimism and our values, and to stay one step ahead of the disease that is slowly upending our lives. And we did it all only to come full circle -- back to love, back to celebration, and back to the simple sharing of an awesome meal and special day with friends.
The more things change, indeed.
- Posted using BlogPress from my iPhone
Tonight we celebrated my beautiful mother's undisclosed-number birthday (hint: she's older than me, which makes her at least 29). We did this by inviting a few friends here in NYC to a small but lovely little birthday dinner. And it might be worth mentioning that this dinner was held at the same restaurant we celebrated her birthday at last year, which was also the day she came to New York for a short visit and ended up leaving behind (temporarily) her husband, home, dogs, friends, and job for what is now a year-long trip and counting -- all for her daughter who suddenly needed more help dealing with end-stage cystic fibrosis.
Um, yeah, talk about a celebration of love.
I don't brag about my family often enough on this blog, honestly. I mean, sure, I might mention my father's crazy antics that keep us all laughing whenever he visits, or the fact that he's now racked up enough frequent flyer miles between Colorado and New York to take us all on a much-deserved vacation when this is all over. And I know I occasionally make reference to my sister's amazing talent, or the fact that she somehow manages to keep us (mostly) grounded even when we're stuck listening to drunk men in the local ER. I even think that I've touched on how grateful I am to my mom, who lives with me, helps me with errands and IVs and the boundless energy of my puppy (who we joke views her as his personal nanny), and accompanies me to every single appointment, even if it just means waiting in the waiting room for moral support. I say these things, of course, but I never really feel like I say them enough.
There wasn't a whole lot I could do today to make mom's birthday extra special. I just recently started a new course of IVs, which of course means I have an infection, and I spent most of the day coughing or sleeping, and trying to rest up for tonight. But I was able to go with her last night to the bakery to pick out some cakes (yes, she got two -- and I dare anyone to claim she's not entitled, although truth be told both were small and to share). I was able to put on a nice dress, wash my hair and make myself look somewhat pretty, and I was able to go out to a dinner that was all about her, exactly as it should be. In the grand scheme of things these small gestures don't feel like all that much for someone who everyday helps make sure I can breathe, get appropriate exercise, and have everything else I need to live as normal a life as possible under the circumstances. I know I could never repay that gift in a million years, but I'm happy that for tonight at least we were able to show mom a small piece of how amazing she really is.
And as for my gift for the evening, I think it came the second I looked around the table (in the same beautiful dining room we sat in a year ago tonight in what would become my mother's official "welcome to New York" dinner) and saw old Colorado friends, new NY friends, my sister, and my mother enjoying an amazing meal worthy of a one year anniversary and a older-than-28 birthday. Because if I had to surmise this past year in one single word it would probably be "change." We have struggled to find our footing, to hold onto our optimism and our values, and to stay one step ahead of the disease that is slowly upending our lives. And we did it all only to come full circle -- back to love, back to celebration, and back to the simple sharing of an awesome meal and special day with friends.
The more things change, indeed.
- Posted using BlogPress from my iPhone
Wednesday, May 26, 2010
The Truth about Waiting
(Or; Why I'm Not in the Fortune-Telling Business)
First off: okay, um, wow? Can I just say that the response for t-shirts has been AMAZING? Who knew so many people were in the market for a new set of lungs (or, you know, a picture of them at least)? Anyway, here's the deal:
*The shirts are officially no cost. I know we all have enough to deal with in terms of payments and financial worries, and I don't want anyone to miss out on the opportunity to give my blog free publicity -- er, I mean to own a beautiful and timeless piece of fashion history -- because of cost. So no charge for shirts.
*If, however, you would like to make a donation toward the cost of printing and shipping, I would be thrilled to accept it. I'm working on setting up a paypal account for that purpose, or simply e-mail me and I'll send my address along for cash/check donations. Just as an FYI, the cost is about $10/shirt, so please limit your donation to that.
*Some people have asked about toddler/child sized t-shirts. As of right now I have two people interested in receiving shirts for their little guys. I'm working on finding a provider willing to print youth sizes with no minimum order, so if you're interested in showing off your kiddo in style, please let me know.
*OFFICIAL DEADLINE for shirt orders is Friday, May 28th (good catch, Jenny!). Sorry about the short notice, but I want to get these printed and sent out ASAP.
Okay, so we're cool on the shirts.
It's been about a month since my last official call, and I'm definitely starting to get restless. Don't get me wrong, there's a part of me that's grateful for the extra time to get everything in order, but you can only repack your hospital bag a certain number of times before you start just wanting to get it over with, already. It's crazy to think that headed into April (with two dry runs from March already behind me), I was absolutely certain that I would have new lungs within the month. Well, okay, so that's not entirely true -- I haven't gotten so cocky yet that I believe I can predict the future, but I was pretty sure the "real" call was coming soon. And now to suddenly find myself at the end of May and still with my CF lungs, well, let's just say I won't be setting up shop as a fortune teller anytime soon. It's humbling, when you think about it, to realize just how uncertain this whole process is. One month you're getting 1-2 calls every week, and then a whole month passes with no lungs available for you. Frustrating, for sure, and also a reminder of why it helps to be on the healthier side of the "transplant window" going into the waiting experience. Lungs don't always come when you expect them, or when you want them . . . there's more to all of this than I will ever understand, but I know I'm grateful to have time to wait, for now at least.
Anyway, after weeks of trying to stay relatively close to home and obsessively checking my phone every five seconds in case I somehow missed a call, I finally woke up and decided that's not the way this relationship is going to go down. After 4 canceled dates and now no calls for several weeks, I'm pretty sure I could do better. No, I'm not switching centers, if that's what you're thinking. I'm still happy overall with my choice and love my doctors, so that's not in the cards anytime soon. Instead, I've decided (again) that it's up to me to actually live my life as best I can during this period, despite the uncertainty of it all. I say "again" because you may remember that I already had this brilliant revelation months ago, but it's all too easy to forget your vow to keep living when the call seems imminent.
So yeah, all of this is a long way of saying that I'm now daring lungs to come and ruin my plans. I've been planning meals out with friends, trips to the Cirque du Soleil, parties at my apartment, and even a couple of day trips. On Monday my mom and I took the train out to New Haven, CT to see my wonderful friend graduate with his (second) master's degree from Yale, and then yesterday we rented a car to travel out to Woodbury Commons -- a truly amazing upscale designer outlet center -- for some shopping and a little fun outside the City. True, we brought enough O2 with us to cover if we got the call along the way, and we're still staying within a couple of hours of my center, but it's still nice to be able to actually make plans and follow through with them.
I think it all goes back to the concept of "readjustment" that I wrote about a few posts ago. For me, at least, there was this huge adjustment when I finally accepted that transplant was on the horizon for me, and then again when I actually went on the list and realized that lungs could technically come for me any day. As my father put it "we went from desperately hoping for a cure to desperately hoping for a fresh set of disease-free lungs" within the span of a couple of years (although obviously we're still hoping for a cure -- we will beat this monster even though to do so wouldn't "save" my lungs at this point). Talk about a major shift in expectations. But I still don't think it compared to the adjustment that took place after my first dry run, when we all suddenly woke up to the hard reality that this could, in fact, happen at any moment, and whether we were prepared or not wasn't going to make any difference to the lungs when they finally arrived. So we went into intense transplant mode, which continued hardcore until the "damp run," at which point we kind of shrugged our shoulders and decided that we had, in fact, seen it all and were literally as prepared as any family could possibly be. So we waited, and waited, and then the adjustments began again as it began to dawn on us all that 4 dry runs does not a transplant make. In other words, each day is a new day, with as much or as little of a chance of a matching donor as the day before it, and expectations don't mean much when the whole thing is out of your hands.
And so I decided to readjust one more time: back to life, back to being grateful for every new day with the lungs God gave me, and back to focusing my energy on the things I can control, rather than spending all my time thinking about something that is going to come when it comes regardless of what I think about it. I figure if time flies when you're having fun, the least I can do is try to speed up this waiting a little bit.
And, in the meantime, if any lungs want to come along and crash my party, that's just fine by me.
First off: okay, um, wow? Can I just say that the response for t-shirts has been AMAZING? Who knew so many people were in the market for a new set of lungs (or, you know, a picture of them at least)? Anyway, here's the deal:
*The shirts are officially no cost. I know we all have enough to deal with in terms of payments and financial worries, and I don't want anyone to miss out on the opportunity to give my blog free publicity -- er, I mean to own a beautiful and timeless piece of fashion history -- because of cost. So no charge for shirts.
*If, however, you would like to make a donation toward the cost of printing and shipping, I would be thrilled to accept it. I'm working on setting up a paypal account for that purpose, or simply e-mail me and I'll send my address along for cash/check donations. Just as an FYI, the cost is about $10/shirt, so please limit your donation to that.
*Some people have asked about toddler/child sized t-shirts. As of right now I have two people interested in receiving shirts for their little guys. I'm working on finding a provider willing to print youth sizes with no minimum order, so if you're interested in showing off your kiddo in style, please let me know.
*OFFICIAL DEADLINE for shirt orders is Friday, May 28th (good catch, Jenny!). Sorry about the short notice, but I want to get these printed and sent out ASAP.
Okay, so we're cool on the shirts.
It's been about a month since my last official call, and I'm definitely starting to get restless. Don't get me wrong, there's a part of me that's grateful for the extra time to get everything in order, but you can only repack your hospital bag a certain number of times before you start just wanting to get it over with, already. It's crazy to think that headed into April (with two dry runs from March already behind me), I was absolutely certain that I would have new lungs within the month. Well, okay, so that's not entirely true -- I haven't gotten so cocky yet that I believe I can predict the future, but I was pretty sure the "real" call was coming soon. And now to suddenly find myself at the end of May and still with my CF lungs, well, let's just say I won't be setting up shop as a fortune teller anytime soon. It's humbling, when you think about it, to realize just how uncertain this whole process is. One month you're getting 1-2 calls every week, and then a whole month passes with no lungs available for you. Frustrating, for sure, and also a reminder of why it helps to be on the healthier side of the "transplant window" going into the waiting experience. Lungs don't always come when you expect them, or when you want them . . . there's more to all of this than I will ever understand, but I know I'm grateful to have time to wait, for now at least.
Anyway, after weeks of trying to stay relatively close to home and obsessively checking my phone every five seconds in case I somehow missed a call, I finally woke up and decided that's not the way this relationship is going to go down. After 4 canceled dates and now no calls for several weeks, I'm pretty sure I could do better. No, I'm not switching centers, if that's what you're thinking. I'm still happy overall with my choice and love my doctors, so that's not in the cards anytime soon. Instead, I've decided (again) that it's up to me to actually live my life as best I can during this period, despite the uncertainty of it all. I say "again" because you may remember that I already had this brilliant revelation months ago, but it's all too easy to forget your vow to keep living when the call seems imminent.
So yeah, all of this is a long way of saying that I'm now daring lungs to come and ruin my plans. I've been planning meals out with friends, trips to the Cirque du Soleil, parties at my apartment, and even a couple of day trips. On Monday my mom and I took the train out to New Haven, CT to see my wonderful friend graduate with his (second) master's degree from Yale, and then yesterday we rented a car to travel out to Woodbury Commons -- a truly amazing upscale designer outlet center -- for some shopping and a little fun outside the City. True, we brought enough O2 with us to cover if we got the call along the way, and we're still staying within a couple of hours of my center, but it's still nice to be able to actually make plans and follow through with them.
I think it all goes back to the concept of "readjustment" that I wrote about a few posts ago. For me, at least, there was this huge adjustment when I finally accepted that transplant was on the horizon for me, and then again when I actually went on the list and realized that lungs could technically come for me any day. As my father put it "we went from desperately hoping for a cure to desperately hoping for a fresh set of disease-free lungs" within the span of a couple of years (although obviously we're still hoping for a cure -- we will beat this monster even though to do so wouldn't "save" my lungs at this point). Talk about a major shift in expectations. But I still don't think it compared to the adjustment that took place after my first dry run, when we all suddenly woke up to the hard reality that this could, in fact, happen at any moment, and whether we were prepared or not wasn't going to make any difference to the lungs when they finally arrived. So we went into intense transplant mode, which continued hardcore until the "damp run," at which point we kind of shrugged our shoulders and decided that we had, in fact, seen it all and were literally as prepared as any family could possibly be. So we waited, and waited, and then the adjustments began again as it began to dawn on us all that 4 dry runs does not a transplant make. In other words, each day is a new day, with as much or as little of a chance of a matching donor as the day before it, and expectations don't mean much when the whole thing is out of your hands.
And so I decided to readjust one more time: back to life, back to being grateful for every new day with the lungs God gave me, and back to focusing my energy on the things I can control, rather than spending all my time thinking about something that is going to come when it comes regardless of what I think about it. I figure if time flies when you're having fun, the least I can do is try to speed up this waiting a little bit.
And, in the meantime, if any lungs want to come along and crash my party, that's just fine by me.
Wednesday, May 19, 2010
Lessons from the Westside Highway
I had an epiphany today.
Like many great moments in history, this one happened in the backseat of a Manhattan taxi cab. (As a sidenote, I'm convinced that cabs breed brilliance b/c of the "near death experience" nature of most intercity cab rides.) So anyway, I was sitting there -- hoping to avoid a collision and thankful that, just in case, I had already registered to become and organ and tissue donor -- and I had my epiphany. Because suddenly, in the midst of all the honking and the lane changing and the jaywalking pedestrians, I had this single, crystal clear thought:
Life would be so much easier if I could just stay seated all the time.
Seriously, that's what I thought. And no, don't worry, that wasn't the brilliant epiphany. Because immediately after having that one, singular thought, I started to remember how absurd, wrong, and well, just "un-Piperlike" that thought really was.
I grew up in Colorado. I spent my childhood hiking, biking, and skiing, when I wasn't busy swimming, riding my horse, and "galloping" around my backyard over hurdles in make-believe horse shows with my friends. Later on, in college, I volunteered my time at a day shelter for homeless youth, at which my primary job was to chase five year old children around and around the center's playground. In short, while I may never have been a super athlete, I have always been extremely active. And I certainly never in my life thought it would be "fun" to sit still.
For me, the hardest part of this whole process has been the feeling that I am slowly but surely "losing" parts of myself and my personality, if only temporarily. I no longer have the physical energy to do many of the things I love to do -- even small, silly stuff like dancing around my apartment or chasing the puppy. And I no longer have the mental energy to commit to certain other activities -- long conversations are sometimes tiring, and I find myself less likely to expend effort on being funny or outgoing. It's not like I'm not me anymore -- I definitely am. But I sometimes feel like a painting that's been left out in the sun too long. The picture's still there, with the artist's unique flair, but the colors are maybe just a little bit muted.
But, I promised you guys and epiphany, so here it is:
No matter how much CF takes from me right now, I will never allow it to cause me to lose sight of myself.
Okay, fine, I know that sounds a little bit cheesy, but you'd be surprised at how hard it is sometimes to say to yourself "okay, today I might only have the energy for the necessary things -- the treatments and the exercises and the appointments and the breathing -- but tonight I will make some time, even just a minute, to remember what it was like before those daily tasks took up all I had for the day, and todream about plan the time when they won't again." It's not easy. In fact, sometimes it's painful to acknowledge that things are changing at all, but my revelation today was that in the acknowledgment -- in the understanding that while certain parts of me will always be present, others have necessarily taken a backseat lately to the simple task of staying alive and breathing -- there also comes a realization that this is not the only way for things to be. I don't have to accept these changes as permanent or even as a guaranteed part of my life right now. I can acknowledge them and then consciously choose when it's worth getting out of breath to do that silly nighttime rompus with Sampson. I can give myself the okay to focus my energy on the important stuff while still remembering that inside it all is a funny girl with a sarcastic sense of humor. I can give myself the freedom to take care of myself now, while still reserving just a little bit of precious energy to fight for the woman I was, am, and will be again.
And that, my friends, was an epiphany worthy of even the most terrifying taxi ride.
Like many great moments in history, this one happened in the backseat of a Manhattan taxi cab. (As a sidenote, I'm convinced that cabs breed brilliance b/c of the "near death experience" nature of most intercity cab rides.) So anyway, I was sitting there -- hoping to avoid a collision and thankful that, just in case, I had already registered to become and organ and tissue donor -- and I had my epiphany. Because suddenly, in the midst of all the honking and the lane changing and the jaywalking pedestrians, I had this single, crystal clear thought:
Life would be so much easier if I could just stay seated all the time.
Seriously, that's what I thought. And no, don't worry, that wasn't the brilliant epiphany. Because immediately after having that one, singular thought, I started to remember how absurd, wrong, and well, just "un-Piperlike" that thought really was.
I grew up in Colorado. I spent my childhood hiking, biking, and skiing, when I wasn't busy swimming, riding my horse, and "galloping" around my backyard over hurdles in make-believe horse shows with my friends. Later on, in college, I volunteered my time at a day shelter for homeless youth, at which my primary job was to chase five year old children around and around the center's playground. In short, while I may never have been a super athlete, I have always been extremely active. And I certainly never in my life thought it would be "fun" to sit still.
For me, the hardest part of this whole process has been the feeling that I am slowly but surely "losing" parts of myself and my personality, if only temporarily. I no longer have the physical energy to do many of the things I love to do -- even small, silly stuff like dancing around my apartment or chasing the puppy. And I no longer have the mental energy to commit to certain other activities -- long conversations are sometimes tiring, and I find myself less likely to expend effort on being funny or outgoing. It's not like I'm not me anymore -- I definitely am. But I sometimes feel like a painting that's been left out in the sun too long. The picture's still there, with the artist's unique flair, but the colors are maybe just a little bit muted.
But, I promised you guys and epiphany, so here it is:
No matter how much CF takes from me right now, I will never allow it to cause me to lose sight of myself.
Okay, fine, I know that sounds a little bit cheesy, but you'd be surprised at how hard it is sometimes to say to yourself "okay, today I might only have the energy for the necessary things -- the treatments and the exercises and the appointments and the breathing -- but tonight I will make some time, even just a minute, to remember what it was like before those daily tasks took up all I had for the day, and to
And that, my friends, was an epiphany worthy of even the most terrifying taxi ride.
Wednesday, May 12, 2010
It's My Party
So have you ever backed yourself into one of those corners where you haven't done something in a while and then you want to get back to it but you want to make a return worthy of such a long absence and then you can't quite get inspired to really do something special so you just put if off even longer and longer and longer, thus perpetuating the whole cycle?
Um, yeah, me neither. Obviously.
In all seriousness though, I'm sorry for being such a bad blogger. I never meant to be gone for almost a month. I promise it started off innocently enough and with the best of intentions -- by which I of course mean that I got sick and decided to spare you all the invite to my personal pity party. Not to mention the fact that I also started high-dose prednisone to combat said sickness and, well, let's be honest: blogs written on steroids should probably come with their own special warning label. So instead of going through all that, I decided to take a little break. And gosh did I ever spare you guys a lot. Seriously, you can thank me later.
I spared you the "little dry run that wasn't #1" where I never left my apartment because the lungs turned out to be high-risk and I am (thankfully) not yet at that point.
And then I spared you the "little dry run that wasn't #2" where I again never left my apartment because my body decided that it would be more fun to spike fevers and play jokes like a resting heartrate of 145+ instead of going into the hospital for yet another try at a transplant.
And then I spared you the inevitable starting of IVs that came after #2, because clearly if you're so sick they're refusing to give you new lungs it's time to call in the big guns.
And then, fast forward nearly a month, and I suddenly realized that I had pretty much spared you guys right out of my life.
Because truth be told life does go on, even when CF rears its ugly head. Since April 23rd I've not only had a few missed dry runs (none of the lungs were ever used, by the way, as if that's supposed to make it any better) -- I've also had a lot of other, non-sickness stuff happen too. I've had my wonderful father come back out from Denver, I've taken my fantastic mom to mother's day brunch, and I've even been able to enjoy some of the surprisingly non-gross weather we've been having in NYC lately (today, obviously, being the major exception -- it is truly gross out there).
So are you ready to thank me yet? Yeah, I didn't really think so.
I guess the simple fact is that if anyone can handle all my CF ups and downs, it's probably you guys, because by and large you've all been there too. And that, of course, is what makes the CF community so invaluable -- like any strong relationship, we're here for each other for better or for worse, in sickness and in health (and then, more often than not, in sickness yet again). We listen to the whining, empathize with the ranting, and even muddle our way through all the Prednisone madness, all while somehow managing to be grateful for the moments of pure, well, life that show up in the middle of all that other stuff. I'm just sorry that it took me about 20 days to remember how special that is.
So this may not be the monumental, witty, and healthy return I originally envisioned, but at least it is a return. And sure, I may still be on IVs -- and I may even have added a new med to the mix just this afternoon -- but I'm still here, still waiting, still breathing, and sometimes, even despite it all, still blogging.
And between all of that, I'd say this pity party is officially over.
Um, yeah, me neither. Obviously.
In all seriousness though, I'm sorry for being such a bad blogger. I never meant to be gone for almost a month. I promise it started off innocently enough and with the best of intentions -- by which I of course mean that I got sick and decided to spare you all the invite to my personal pity party. Not to mention the fact that I also started high-dose prednisone to combat said sickness and, well, let's be honest: blogs written on steroids should probably come with their own special warning label. So instead of going through all that, I decided to take a little break. And gosh did I ever spare you guys a lot. Seriously, you can thank me later.
I spared you the "little dry run that wasn't #1" where I never left my apartment because the lungs turned out to be high-risk and I am (thankfully) not yet at that point.
And then I spared you the "little dry run that wasn't #2" where I again never left my apartment because my body decided that it would be more fun to spike fevers and play jokes like a resting heartrate of 145+ instead of going into the hospital for yet another try at a transplant.
And then I spared you the inevitable starting of IVs that came after #2, because clearly if you're so sick they're refusing to give you new lungs it's time to call in the big guns.
And then, fast forward nearly a month, and I suddenly realized that I had pretty much spared you guys right out of my life.
Because truth be told life does go on, even when CF rears its ugly head. Since April 23rd I've not only had a few missed dry runs (none of the lungs were ever used, by the way, as if that's supposed to make it any better) -- I've also had a lot of other, non-sickness stuff happen too. I've had my wonderful father come back out from Denver, I've taken my fantastic mom to mother's day brunch, and I've even been able to enjoy some of the surprisingly non-gross weather we've been having in NYC lately (today, obviously, being the major exception -- it is truly gross out there).
So are you ready to thank me yet? Yeah, I didn't really think so.
I guess the simple fact is that if anyone can handle all my CF ups and downs, it's probably you guys, because by and large you've all been there too. And that, of course, is what makes the CF community so invaluable -- like any strong relationship, we're here for each other for better or for worse, in sickness and in health (and then, more often than not, in sickness yet again). We listen to the whining, empathize with the ranting, and even muddle our way through all the Prednisone madness, all while somehow managing to be grateful for the moments of pure, well, life that show up in the middle of all that other stuff. I'm just sorry that it took me about 20 days to remember how special that is.
So this may not be the monumental, witty, and healthy return I originally envisioned, but at least it is a return. And sure, I may still be on IVs -- and I may even have added a new med to the mix just this afternoon -- but I'm still here, still waiting, still breathing, and sometimes, even despite it all, still blogging.
And between all of that, I'd say this pity party is officially over.
Friday, April 23, 2010
Broken Record
Over the past few months (um, 8, in case anyone's actually counting), I have had a lot of time to observe the weird inner workings of this process we call "waiting for transplant." It's definitely a crazy system, filled with its own quirks and politics and lifestyle adjustments. And one of the strangest of these that I've identified so far is something I have come to term "broken record syndrome" (BRS).
BRS, I have learned, is a highly contagious disorder characterized by an almost compulsive need to repeat the same stories multiple times, often to the same select group of people. This nasty little critter feeds on the curiosity of well-meaning friends and relatives and, oddly enough, on facebook status updates, which cause it to multiply and spread at a startling rate. And, like most opportunistic infections, BRS is far more common in the chronically ill, and more common still in those of us faced with a life-threatening and yet life-saving surgery. It also seems to inevitably flare up after each successive dry run. Interestingly, although BRS involves the retelling of the same story over and over (and over) again, another odd symptom is that the story itself seems to vary significantly from one retelling to another. At times BRS makes one prone to wild exaggeration, turning a simple dry run into a near-death experience replete with crazed anesthesiologists and dramatic background music. Other retellings of the same experience involve an almost laughable apathy and lack of emotion, reducing the 10 hour ordeal to a mere run-of-the-mill night at the hospital during which you just happened to be poked with 4 separate arterial lines. And neither story is inaccurate, as BRS apparently makes one as prone to mood swings as you might expect from a large-scale prednisone taper.
At this point I'm fairly certain that I have one of the most advanced cases of BRS ever recorded.
In fact, BRS has now spread endemically throughout my apartment -- not even my sister or father (who live the majority of their lives outside my 18th story domain) seem immune to its grasp. Case in point: the other day I was vigorously retelling the story of the "little dry run that wasn't" to a friend over the phone. For those of you unaware, this tale refers to a call I received last Wednesday afternoon, that for various reasons did not result in my receiving new lungs. But, since I never left my apartment, I refuse to count it as a true dry run, hence its title as the "little dry run that wasn't." At any rate, I was retelling this story (which I am aware that I just retold on this blog as well -- love the irony), and doing so in a particularly dramatic fashion, when I suddenly heard my mother's cell phone ring. Undeterred, I continued with my own theatrics, including tears and some choice words. It was at this point that I overheard snippets from my mother's conversation: "Wednesday," "lungs," and "transplant." It dawned on me that we were both repeating the tale to two separate people on two different phones at the same time, and both of us probably for at least the third time that day. It was, in short, a BRS code blue moment -- and a scenario that has become increasingly common in my tiny little apartment.
Don't get me wrong, it's not that we don't have anything else to talk about, really. It's just that everything else we might say -- "wow, my hair has gotten really long lately" or "Sampson seems unusually hyper this morning, maybe we gave him too many treats?" -- seems to pale in comparison to "ohmigod we got ANOTHER call last night and here's what happened and would you believe they did this and yes, of course we're still waiting and no we have no idea when the real thing will happen but wow can you believe we might get new lungs soon?!" I mean really, how could a hyperactive puppy compete with that kind of dramatic monotony?
As far as I know, there's really only two cures for BRS: 1) an end to the underlying condition (in my case, waiting for transplant), and 2) time. Right now I think I'd settle for the first of those, with the understanding that the second will eventually follow. And in the meantime, I hope you all can bear with me as I indulge my BRS on this blog, by phone, and perhaps occasionally in person. I promise that I will recover.
And as long as we're waiting, let me tell you a story...
BRS, I have learned, is a highly contagious disorder characterized by an almost compulsive need to repeat the same stories multiple times, often to the same select group of people. This nasty little critter feeds on the curiosity of well-meaning friends and relatives and, oddly enough, on facebook status updates, which cause it to multiply and spread at a startling rate. And, like most opportunistic infections, BRS is far more common in the chronically ill, and more common still in those of us faced with a life-threatening and yet life-saving surgery. It also seems to inevitably flare up after each successive dry run. Interestingly, although BRS involves the retelling of the same story over and over (and over) again, another odd symptom is that the story itself seems to vary significantly from one retelling to another. At times BRS makes one prone to wild exaggeration, turning a simple dry run into a near-death experience replete with crazed anesthesiologists and dramatic background music. Other retellings of the same experience involve an almost laughable apathy and lack of emotion, reducing the 10 hour ordeal to a mere run-of-the-mill night at the hospital during which you just happened to be poked with 4 separate arterial lines. And neither story is inaccurate, as BRS apparently makes one as prone to mood swings as you might expect from a large-scale prednisone taper.
At this point I'm fairly certain that I have one of the most advanced cases of BRS ever recorded.
In fact, BRS has now spread endemically throughout my apartment -- not even my sister or father (who live the majority of their lives outside my 18th story domain) seem immune to its grasp. Case in point: the other day I was vigorously retelling the story of the "little dry run that wasn't" to a friend over the phone. For those of you unaware, this tale refers to a call I received last Wednesday afternoon, that for various reasons did not result in my receiving new lungs. But, since I never left my apartment, I refuse to count it as a true dry run, hence its title as the "little dry run that wasn't." At any rate, I was retelling this story (which I am aware that I just retold on this blog as well -- love the irony), and doing so in a particularly dramatic fashion, when I suddenly heard my mother's cell phone ring. Undeterred, I continued with my own theatrics, including tears and some choice words. It was at this point that I overheard snippets from my mother's conversation: "Wednesday," "lungs," and "transplant." It dawned on me that we were both repeating the tale to two separate people on two different phones at the same time, and both of us probably for at least the third time that day. It was, in short, a BRS code blue moment -- and a scenario that has become increasingly common in my tiny little apartment.
Don't get me wrong, it's not that we don't have anything else to talk about, really. It's just that everything else we might say -- "wow, my hair has gotten really long lately" or "Sampson seems unusually hyper this morning, maybe we gave him too many treats?" -- seems to pale in comparison to "ohmigod we got ANOTHER call last night and here's what happened and would you believe they did this and yes, of course we're still waiting and no we have no idea when the real thing will happen but wow can you believe we might get new lungs soon?!" I mean really, how could a hyperactive puppy compete with that kind of dramatic monotony?
As far as I know, there's really only two cures for BRS: 1) an end to the underlying condition (in my case, waiting for transplant), and 2) time. Right now I think I'd settle for the first of those, with the understanding that the second will eventually follow. And in the meantime, I hope you all can bear with me as I indulge my BRS on this blog, by phone, and perhaps occasionally in person. I promise that I will recover.
And as long as we're waiting, let me tell you a story...
Friday, April 16, 2010
Bumps in the Road
Well, it's that time of the month again. Oh come on, don't be skittish -- I know a lot (most?) of you out there know exactly what I'm talking about. You know that feeling of anticipation you get a couple of days before it actually happens, the emotional roller coaster, the counting down of the days until things can be "normal" again, the sudden resurgence of your appetite, and then . . . the moment of truth when suddenly it happens and you immediately have one single, solitary thought that quite frankly cannot be ignored:
I cannot wait to take a REAL SHOWER!
Seriously, guys, what did you think I was talking about? Sheesh . . .
Yep, it's official: I'm stopping IVs today. I got the go ahead from my wonderful doctor yesterday afternoon, and as if that weren't good enough news on its own, I also get to reduce my steroid dose down to 20 mg. I'm pretty sure this means that I'm now heading into the best part of Spring with no needle in my chest, far fewer antibiotic-induced sun issues to worry about, and a drastically reduced probability of severe mood swings. Seriously, who could ask for anything more?
The less good news is that I haven't had any action lately on the transplant front. I feel terrible complaining about that, frankly -- I know I've had more chances in a shorter period of time than a lot of my friends who are, by some measurements, even more in need of lungs -- but I want to be honest with you guys and I think you can handle it. This process is strange and draining, both physically and mentally. Two weeks ago to the day I was in the hospital, about to have my third dry run in less than a 14 day span. When I came home I was hoping for a couple of days "off" to recover and regain strength (again, both mentally and physically), but I was also convinced that the next call would come again quickly. And since then I have literally jumped every time the phone rings (especially the wrong number we got at 12:30 am, which is, I should note, the third such middle of the night scare we've had since this whole process started. Good joke there, universe!). But then the couple of days passed and I was relieved, and then more days passed and I was somewhat surprised, and now a whole lot of days have passed and I am really just kind of confused. Logically I of course know that this is normal, that often quite a bit of time can lapse between workable offers of lungs, but it's still tough to be in such a state of anticipation and then have to try and resume some sort of normal, run-of-the-mill routine.
Luckily, I've had lots of distractions in the form of sunny NYC days, a few amazing nights with friends and family, and even a fairly mischievous shorkie (whose latest antics include devouring an entire "wolf size" bone in a matter of minutes -- keep in mind he is a mix of two lap dog breeds -- and then proceeding to get sick in literally every. single. room. of my apartment). I'm also lucky enough to be feeling better, and to have a rapidly healing wrist that is more or less a normal color again even after all the drama surrounding the arterial line. Sure, it's not the perfect lungs that I had hoped to be breathing with by now, but it is something, and I'll take what I can get at this point.
I guess my main goal right now is just to find peace with this path I've been walking now for the past couple of years, bumps and potholes and steep hills and all. It's amazing to me how much of an emotional journey this transplant process has been so far, because for me that aspect of it all has been at least as difficult as the physical one. And yet, at the same time, it's my physical state that demands most of my time, energy, and attention right now. So it is, as ever, a delicate balance, and one that I've been lucky enough to navigate so far with only a few minor breakdowns. More than anything I've just come to believe that it's not so much the bumps in the road that define the journey, but maybe just the experience of doing the walking.
Walk on, beautiful people.
I cannot wait to take a REAL SHOWER!
Seriously, guys, what did you think I was talking about? Sheesh . . .
Yep, it's official: I'm stopping IVs today. I got the go ahead from my wonderful doctor yesterday afternoon, and as if that weren't good enough news on its own, I also get to reduce my steroid dose down to 20 mg. I'm pretty sure this means that I'm now heading into the best part of Spring with no needle in my chest, far fewer antibiotic-induced sun issues to worry about, and a drastically reduced probability of severe mood swings. Seriously, who could ask for anything more?
The less good news is that I haven't had any action lately on the transplant front. I feel terrible complaining about that, frankly -- I know I've had more chances in a shorter period of time than a lot of my friends who are, by some measurements, even more in need of lungs -- but I want to be honest with you guys and I think you can handle it. This process is strange and draining, both physically and mentally. Two weeks ago to the day I was in the hospital, about to have my third dry run in less than a 14 day span. When I came home I was hoping for a couple of days "off" to recover and regain strength (again, both mentally and physically), but I was also convinced that the next call would come again quickly. And since then I have literally jumped every time the phone rings (especially the wrong number we got at 12:30 am, which is, I should note, the third such middle of the night scare we've had since this whole process started. Good joke there, universe!). But then the couple of days passed and I was relieved, and then more days passed and I was somewhat surprised, and now a whole lot of days have passed and I am really just kind of confused. Logically I of course know that this is normal, that often quite a bit of time can lapse between workable offers of lungs, but it's still tough to be in such a state of anticipation and then have to try and resume some sort of normal, run-of-the-mill routine.
Luckily, I've had lots of distractions in the form of sunny NYC days, a few amazing nights with friends and family, and even a fairly mischievous shorkie (whose latest antics include devouring an entire "wolf size" bone in a matter of minutes -- keep in mind he is a mix of two lap dog breeds -- and then proceeding to get sick in literally every. single. room. of my apartment). I'm also lucky enough to be feeling better, and to have a rapidly healing wrist that is more or less a normal color again even after all the drama surrounding the arterial line. Sure, it's not the perfect lungs that I had hoped to be breathing with by now, but it is something, and I'll take what I can get at this point.
I guess my main goal right now is just to find peace with this path I've been walking now for the past couple of years, bumps and potholes and steep hills and all. It's amazing to me how much of an emotional journey this transplant process has been so far, because for me that aspect of it all has been at least as difficult as the physical one. And yet, at the same time, it's my physical state that demands most of my time, energy, and attention right now. So it is, as ever, a delicate balance, and one that I've been lucky enough to navigate so far with only a few minor breakdowns. More than anything I've just come to believe that it's not so much the bumps in the road that define the journey, but maybe just the experience of doing the walking.
Walk on, beautiful people.
Saturday, April 3, 2010
Bad Saturday
alright. so the doctor just came in to tell us, that after putting her to sleep, after putting her on the vent, after the epidural, they realized the lungs were in fact not good.
she's apparently now awake, off the vent, mildly jovial from the drugs and aware (though perhaps not fully comprehensive) of the fact that she did not receive a transplant today.
we'll see her within the hour. i'll let her fill in the additional details tomorrow. send her love and the strength, patience and positivity. perhaps one day, soon, with her strong new lungs we'll look back at this and laugh and thank god that she didn't get those lungs, but rather the lungs she will soon receive. those that will carry her forward.
she's apparently now awake, off the vent, mildly jovial from the drugs and aware (though perhaps not fully comprehensive) of the fact that she did not receive a transplant today.
we'll see her within the hour. i'll let her fill in the additional details tomorrow. send her love and the strength, patience and positivity. perhaps one day, soon, with her strong new lungs we'll look back at this and laugh and thank god that she didn't get those lungs, but rather the lungs she will soon receive. those that will carry her forward.
Wednesday, March 31, 2010
This is Hard
I'm not quite sure how to even sit down and write this post. Emotional roller coaster doesn't even begin to describe the events of last night, but I guess when in doubt, go with the cliche. And I guess in some ways, a roller coaster image is fitting: the highs and lows, the feeling of racing along a track over which you have no control, the slow motion of the moment contrasted with the whirlwind feeling you get when the ride is finally over, that whole "did that even just happen?" feeling of stepping out of the car.
This is hard.
Yes, this is Piper writing again. No, I'm not the world's most amazing recovery artist. Yes, that means I didn't get the lungs. The right lung, once again, wasn't perfect, and in this game you don't settle for any maybes. I'm so grateful to Columbia for being discriminating, for searching for lungs that are absolutely right for me, and for having the courage to pull the plug, even after 9 hours of build up, when the right lung just doesn't look...right.
Still, this is hard.
My right wrist is bruised beyond recognition from the arterial line -- a yellowish purple battle scar to remind me of the physical pain that is just a part of this process. My heart is bruised too, in a way that it wasn't after last week's dry run -- an invisible yet poignant scar to remind me of the emotional pain, the loss, and the tragedy that is also a part of this process. And, after two calls in less than two weeks, my hope is higher than ever that MY lungs are close behind all these rehearsals -- a beautiful light to hold onto to remind me of the beauty that is, of course, just a part of this process. It is all just a part of transplant -- such a miraculous, cruel, amazing, delicate, unpredictable science.
And it is hard.
So today I remind myself that hard doesn't always mean not worth it, and that for every "dry run" I've had someone else has been given a gift beyond measure. I remind myself that people are donating, that calls are coming, and that human kindness is flourishing and that strangers are constantly changing each others' lives through the simple choice to give not only of their money or time, but of themselves. I remind myself that it is not just my desire for new breath that controls this process, but a much wiser, more loving plan. I remind myself of all of this, and I promise to hold it all in my heart, to remember.
But, truth be told, it is hard.
This is hard.
Yes, this is Piper writing again. No, I'm not the world's most amazing recovery artist. Yes, that means I didn't get the lungs. The right lung, once again, wasn't perfect, and in this game you don't settle for any maybes. I'm so grateful to Columbia for being discriminating, for searching for lungs that are absolutely right for me, and for having the courage to pull the plug, even after 9 hours of build up, when the right lung just doesn't look...right.
Still, this is hard.
My right wrist is bruised beyond recognition from the arterial line -- a yellowish purple battle scar to remind me of the physical pain that is just a part of this process. My heart is bruised too, in a way that it wasn't after last week's dry run -- an invisible yet poignant scar to remind me of the emotional pain, the loss, and the tragedy that is also a part of this process. And, after two calls in less than two weeks, my hope is higher than ever that MY lungs are close behind all these rehearsals -- a beautiful light to hold onto to remind me of the beauty that is, of course, just a part of this process. It is all just a part of transplant -- such a miraculous, cruel, amazing, delicate, unpredictable science.
And it is hard.
So today I remind myself that hard doesn't always mean not worth it, and that for every "dry run" I've had someone else has been given a gift beyond measure. I remind myself that people are donating, that calls are coming, and that human kindness is flourishing and that strangers are constantly changing each others' lives through the simple choice to give not only of their money or time, but of themselves. I remind myself that it is not just my desire for new breath that controls this process, but a much wiser, more loving plan. I remind myself of all of this, and I promise to hold it all in my heart, to remember.
But, truth be told, it is hard.
Tuesday, March 30, 2010
This Unfolding
Rain courses down the living room window next to where I sit, typing these words by the grey light of a cloudy city day. I've always loved the rain, for some reason -- never complained about the afternoon thundershowers that so dominated my childhood summers in Colorado, even as the flashing lightening and deep booming echos startled my horses and put my swimming lessons on hold for the hour. And even today, with the mountains replaced by towering buildings and the frightened horses giving way to honking taxi cabs, I still find rain more beautiful than irritating. It's something about the peaceful rhythm of its fall from the heavens, or the eerie magic of a mist-filled skyline that does it to me, I guess. Or maybe it's just the confirmation of yet another cycle: water from the sky to the earth, the changing of the seasons, April (or late March) showers drifting slowly into the promise of May flowers...or so I'm told, anyway. There's just something about rain that makes me want to savor the moment.
Of course, it helps when that moment is warm and dry, filled with a cuddling shorkie after a hot bath and the anticipation of a late-night movie with my sister. It helps when that moment is a brief respite from the constant coughing, and comes in a hour where there are no treatments to be done, no more pills to swallow, no IVs to hook up until later tonight. It doesn't even hurt to have the moment fall in a rare space of "alone time" (sorry, Sampson, present company excluded) -- a place in time when my apartment is once again my own personal domain: my light, my shadows, my windows, my space.
My life.
It's weird for me sometimes to think of this space I'm moving through as a part of my life. There is so much language to the contrary: "my life is on hold," "waiting on the gift of life," "hoping to get my second chance," -- always waiting, hoping, wishing. There is a part of me that prefers to see myself as the person I was before all this started (wait, was there ever a "before" period? Or was it all just one seamless transition?), or the person I will perhaps become after this is all over. A part of me that would like to separate out this period of waiting and constant sickness as some sort of intermission -- a pause in between acts of the real show -- a time to visit the concession stand and stretch your legs until the main actress catches her breath and resumes the stage, her weaker, sicker understudy retired to the wings at last. There is definitely a part of me that would like to scrap this chapter -- just edit it all out until the page is gloriously, perfectly white again, and filled with the promise of any new story.
Yep, there is definitely that part of me.
But, weirdly enough, there is also a growing sense in my mind that this waiting is, in fact, not just a part of my life, but a MAJOR passage in my own personal journey. This is not an intermission, in other words, but perhaps a type of dramatic climax -- the moment when the plot comes together and the heroine finally comes to terms with something deeper than herself. Which sounds, of course, wonderfully dramatic and intriguing, but hardly suffices to tell the story of all the many moments that I have been living lately:
The moment when I was told I needed a transplant and I knew CF had won, in a sense, because it was taking my lungs from me.
The moment when I accepted that I needed a transplant and I knew CF had NOT won, in any sense, because it could never take my spirit from me.
The moment when I was told I could actually have a transplant and I knew gratitude and excitement and fear beyond any of my wildest emotional fantasies.
The moment(s) when I realized that no one has to start dying until they choose to stop living, and that one word doesn't have to define my entire existence, no matter how scary a concept it might represent.
The moment I was offered a chance at new breath from a stranger.
The moment I relinquished my chance at new breath into the chest of another stranger.
The moment I came back home to my shorkie and my family ordered (good) mexican food and my friends came over for an impromptu gathering that evening and I realized that I was okay, I was still breathing, and that I would live to see the next day and (hopefully) the next set of perfect lungs.
The moment I sat with my shorkie and watched the rain course down my living room window as I sat typing out a rambling message of what it's like to live in waiting, instead of waiting to live.
Recently I read a quote from a young psychologist who developed AIDS during the start of the epidemic. After learning his diagnosis, before he even told his friends, he wrote these words (taken from And the Band Played On, by Randy Shilts):
"It's important for me to keep a very close watch on this time. It would be so easy to think I'm not even going through this. It's an interesting time. I would not miss it for the world -- what it's like to go through this unfolding." -- Gary Walsh, 1983
Neither would I.
Of course, it helps when that moment is warm and dry, filled with a cuddling shorkie after a hot bath and the anticipation of a late-night movie with my sister. It helps when that moment is a brief respite from the constant coughing, and comes in a hour where there are no treatments to be done, no more pills to swallow, no IVs to hook up until later tonight. It doesn't even hurt to have the moment fall in a rare space of "alone time" (sorry, Sampson, present company excluded) -- a place in time when my apartment is once again my own personal domain: my light, my shadows, my windows, my space.
My life.
It's weird for me sometimes to think of this space I'm moving through as a part of my life. There is so much language to the contrary: "my life is on hold," "waiting on the gift of life," "hoping to get my second chance," -- always waiting, hoping, wishing. There is a part of me that prefers to see myself as the person I was before all this started (wait, was there ever a "before" period? Or was it all just one seamless transition?), or the person I will perhaps become after this is all over. A part of me that would like to separate out this period of waiting and constant sickness as some sort of intermission -- a pause in between acts of the real show -- a time to visit the concession stand and stretch your legs until the main actress catches her breath and resumes the stage, her weaker, sicker understudy retired to the wings at last. There is definitely a part of me that would like to scrap this chapter -- just edit it all out until the page is gloriously, perfectly white again, and filled with the promise of any new story.
Yep, there is definitely that part of me.
But, weirdly enough, there is also a growing sense in my mind that this waiting is, in fact, not just a part of my life, but a MAJOR passage in my own personal journey. This is not an intermission, in other words, but perhaps a type of dramatic climax -- the moment when the plot comes together and the heroine finally comes to terms with something deeper than herself. Which sounds, of course, wonderfully dramatic and intriguing, but hardly suffices to tell the story of all the many moments that I have been living lately:
The moment when I was told I needed a transplant and I knew CF had won, in a sense, because it was taking my lungs from me.
The moment when I accepted that I needed a transplant and I knew CF had NOT won, in any sense, because it could never take my spirit from me.
The moment when I was told I could actually have a transplant and I knew gratitude and excitement and fear beyond any of my wildest emotional fantasies.
The moment(s) when I realized that no one has to start dying until they choose to stop living, and that one word doesn't have to define my entire existence, no matter how scary a concept it might represent.
The moment I was offered a chance at new breath from a stranger.
The moment I relinquished my chance at new breath into the chest of another stranger.
The moment I came back home to my shorkie and my family ordered (good) mexican food and my friends came over for an impromptu gathering that evening and I realized that I was okay, I was still breathing, and that I would live to see the next day and (hopefully) the next set of perfect lungs.
The moment I sat with my shorkie and watched the rain course down my living room window as I sat typing out a rambling message of what it's like to live in waiting, instead of waiting to live.
Recently I read a quote from a young psychologist who developed AIDS during the start of the epidemic. After learning his diagnosis, before he even told his friends, he wrote these words (taken from And the Band Played On, by Randy Shilts):
"It's important for me to keep a very close watch on this time. It would be so easy to think I'm not even going through this. It's an interesting time. I would not miss it for the world -- what it's like to go through this unfolding." -- Gary Walsh, 1983
Neither would I.
Monday, March 22, 2010
The Hardest Part
Okay, so now that I've had a little time to decompress after yesterday, I've come to a really somewhat startling conclusion:
Yesterday might have been one of the best days of my life.
Um, yeah, you read that right. And no, don't worry, I'm not suffering from post-traumatic stress delusion over here. Believe me, I never expected that I would ever write those words about a day filled with hospitals, blood draws, IVs, super stylish "gowns," and well, frankly, disappointment. I never thought that I would ever call spending 9 hours NPO being prepped for surgery a good time. And, to be honest, it really wasn't a "good time" in the traditional sense of the term, but I have since come to understand that it was a very "good time" in terms of learning a very valuable lesson.
Okay, let me explain.
A couple of my favorite CF transplant bloggers have recently been inspiring me with their words of wisdom about trust and acceptance. I'm always so grateful to read those messages because they remind me that even when things don't turn out as we would like them to, they still turn out as they should. And I guess I should preface all this by saying that I do, in fact, believe in the Greater Plan -- that God has a purpose for us, that we are all connected as part of creation, and that (as Sara so wonderfully reminded me) "the universe is unfolding as it should." But I'm also the first to admit that believing in that concept in the abstract is often a whole lot simpler than believing and actually trusting and rejoicing in that concept on a daily basis, especially when, well...shit happens.
Yesterday, though, the abstract became real for me in a way I don't think I could have ever anticipated, and in retrospect it seems like the best blessing I could have ever asked for.
I felt firsthand how one family's loss can, through their grace and generosity, become a miracle of hope for another family. I sat in a hospital room with my sister as we both shed tears for the family that was offering us a second chance -- that without even knowing us was willing to share the greatest gift we could even imagine -- and doing so unconditionally, without asking anything in return. And honestly, it was pretty indescribable to actually feel that miracle -- to know suddenly (rather than simply to think) that hope and life really can be born out of grief and death.
And then, later, the other side of that coin became equally real to me when I learned that my loss would be another family's joy and rebirth. It was just a flash -- a split second spent on a hospital transport gurney in the dimly lit OR holding area -- but I realized that just as I was so willing to accept that another family's loss for my gain was right, I also needed to trust just as fully in the fact that my loss was, in fact, exactly what should have happened. Which is not to say that it was easy, or that I was particularly thrilled when I got the news or when as I watched another man roll off to the OR where my surgery had been scheduled, but I guess it is to say that I was honestly at peace with it even in that very emotional moment. It wasn't "fun" for sure, but it was okay, and more than that -- it was right.
I really, truly believe that -- now more than ever. Just as I really, truly believe that perfect lungs will come for me, and for Beth and Jess and Jen and Rhi and Gina and Katie and Jerry and James and Andrew. I don't know that, of course, but I do think I know now that it will all be exactly as it should be, either way.
Does all this sound too passive for your taste? I promise I don't mean it to be. One thing I have learned through this entire process is that you have to fight and advocate for yourself, and you have to take active, positive steps toward making good things happen. But when things don't turn out exactly as I planned them, even after all my best efforts, I hope that I can also take from this entire experience the understanding that, well, that's okay too.
Tom Petty, by the way, was wrong: it's not so much the waiting as the trusting that is, in my opinion, the hardest part. And also the most beautiful.
Yesterday might have been one of the best days of my life.
Um, yeah, you read that right. And no, don't worry, I'm not suffering from post-traumatic stress delusion over here. Believe me, I never expected that I would ever write those words about a day filled with hospitals, blood draws, IVs, super stylish "gowns," and well, frankly, disappointment. I never thought that I would ever call spending 9 hours NPO being prepped for surgery a good time. And, to be honest, it really wasn't a "good time" in the traditional sense of the term, but I have since come to understand that it was a very "good time" in terms of learning a very valuable lesson.
Okay, let me explain.
A couple of my favorite CF transplant bloggers have recently been inspiring me with their words of wisdom about trust and acceptance. I'm always so grateful to read those messages because they remind me that even when things don't turn out as we would like them to, they still turn out as they should. And I guess I should preface all this by saying that I do, in fact, believe in the Greater Plan -- that God has a purpose for us, that we are all connected as part of creation, and that (as Sara so wonderfully reminded me) "the universe is unfolding as it should." But I'm also the first to admit that believing in that concept in the abstract is often a whole lot simpler than believing and actually trusting and rejoicing in that concept on a daily basis, especially when, well...shit happens.
Yesterday, though, the abstract became real for me in a way I don't think I could have ever anticipated, and in retrospect it seems like the best blessing I could have ever asked for.
I felt firsthand how one family's loss can, through their grace and generosity, become a miracle of hope for another family. I sat in a hospital room with my sister as we both shed tears for the family that was offering us a second chance -- that without even knowing us was willing to share the greatest gift we could even imagine -- and doing so unconditionally, without asking anything in return. And honestly, it was pretty indescribable to actually feel that miracle -- to know suddenly (rather than simply to think) that hope and life really can be born out of grief and death.
And then, later, the other side of that coin became equally real to me when I learned that my loss would be another family's joy and rebirth. It was just a flash -- a split second spent on a hospital transport gurney in the dimly lit OR holding area -- but I realized that just as I was so willing to accept that another family's loss for my gain was right, I also needed to trust just as fully in the fact that my loss was, in fact, exactly what should have happened. Which is not to say that it was easy, or that I was particularly thrilled when I got the news or when as I watched another man roll off to the OR where my surgery had been scheduled, but I guess it is to say that I was honestly at peace with it even in that very emotional moment. It wasn't "fun" for sure, but it was okay, and more than that -- it was right.
I really, truly believe that -- now more than ever. Just as I really, truly believe that perfect lungs will come for me, and for Beth and Jess and Jen and Rhi and Gina and Katie and Jerry and James and Andrew. I don't know that, of course, but I do think I know now that it will all be exactly as it should be, either way.
Does all this sound too passive for your taste? I promise I don't mean it to be. One thing I have learned through this entire process is that you have to fight and advocate for yourself, and you have to take active, positive steps toward making good things happen. But when things don't turn out exactly as I planned them, even after all my best efforts, I hope that I can also take from this entire experience the understanding that, well, that's okay too.
Tom Petty, by the way, was wrong: it's not so much the waiting as the trusting that is, in my opinion, the hardest part. And also the most beautiful.
Friday, March 12, 2010
How You Met My Mother
Guest Post Stats:
Name: Kathleen Beatty (aka Piper's mom)
Age: Wouldn't you like to know.
Credentials: Political science professor. 31 years experience as a mom, 28 years bonus as a "CF mom." Primary caretaker (um, make that carePARTNER) in Piper's transplant journey. "Grandma" to Sampson the puppy. All-around superwoman. First time blogger.
Special Talents Include: Treatment enforcer, honorary pharmacist and nurse, CFF advocate.
Hometown: Denver, CO (currently Living in NYC)
Hi. I'm Kathleen Beatty, Piper's mom, and this is my first foray into blog writing. I have to confess being more than a little intimidated by my daughter's prose -- and humor -- but bear with me. I have something to say to the parents among you.
There is something truly surreal about being the parent of a hopeful lung-transplant recipient. I've thought about this a lot. How did I get from Point A -- living with a relatively healthy kid who had a very normal life (if one overlooks the 30+ pills a day, lugging ridiculous pieces of equipment into hotel rooms where neighbors wonder if a plane is taking off in the next room, living in the mist of nebulizers, and starting or disconnecting home IVs in every imaginable place) to Point B -- listening to a charming and funny doctor say things like "IF you make it past the first three months" and then later "IF you make it through the first five years, you WILL eventually experience chronic rejection." How did we arrive at a place where we can sit dry-eyed (most of the time) and hope that someday soon a young surgeon will rip open our child's chest, remove her rotting lungs, and sew in a new pair -- just like that?
I often think back to the milestones we've passed on our way to "end-stage cystic fibrosis" (and really, who decided to call it THAT??). I remember dreading those milestones -- the clubbing, then regular hospitalizations or home IVs, the colonization of dreaded bacteria, the central line, nighttime oxygen, feeding tubes (Piper has actually skipped that one), really frequent home IVs and hospitalizations, the bronchoscopies, CF-related Diabetes (she has so far dodged that bullet, too), osteoporosis or arthritis, and finally -- the monster dread -- the transplant. In each case, my husband and I would say quietly at night: "at least she's not on oxygen," or "at least she doesn't have XXX bacteria (the next dreaded bug)." When Piper was an infant and contracted pneumonia at four weeks, we even whispered, "at least she doesn't have cystic fibrosis" because, in the neighboring room a 5 year old was dying of CF. Only two weeks later we would learn that Piper, too, suffered from the disease.
In those weeks and months after Piper's diagnosis, I fell deeply into grief. Children are supposed to outlive their parents. They are meant to be happy and healthy -- to have "normal lives." I read every gruesome bit of literature I could find about the horrors of CF, and I spent lots of time driving around in my care, crying rivers for my daughter's "normal life."
But the truth is, Piper's actual normal life -- her own personal version -- really was lovely. She was and is so full of life, and she's happy. But of course that didn't mean that didn't mean that there weren't more milestones in our future.
A day came when the doctors we knew so well said "Piper is colonizing pseudomonas and needs to be hospitalized" or "Piper will need oxygen at night to avoid damaging her heart and to improve her sleep" and we would pack up our bags, go to that hospital, and watch for improvement, or we went to pick up the oxygen canisters and concentrators. And, while one little voice wants to say "no, it's not time yet -- not for my child," another part of us knows that it is time and that we have passed yet another milestone. And, somehow, we (as CF parents) not only find the strength to keep going, but to welcome the physical relief that new treatments may bring to our very normal kids.
This all builds up to transplant, the most dreaded of the dreaded it seems. Piper had described in her blog her feelings when her doctor explained that she was referring her for a transplant evaluation. I was there. I don't think either of us said one word on the way home from the appointment. No, it can't be time. She just finished law school. She's working at a major firm. She has big ideas about life. We can't be facing a lung transplant.
Since that day, we have looked at CT scans that show petrified swiss cheese where the lungs should be. We've had sleepless nights filled with more coughing than I thought possible (and for the parents of a CFer, that's saying a lot!). We've done treatments at 3 AM, 7 AM, midnight. She has coughed up unbelievable quantities of mucus, had terrible reactions to drugs, experienced chronic and frequent lung infections, and even lung collapses. We've even been to New York City emergency rooms -- not a happy experience. Through it all, though, Piper continues to live a perfectly normal life (her kind of normal and, yes, our kind of normal too).
Something else has happened. A calm has settled over our Manhattan apartment. (Piper, however, would not agree that I or the rest of the family is "calm." During one of our "dry runs" the doctors informed her she should try to be at the hospital within a half hour, and I ignored my checklist and jumped straight into a nice hot shower. My husband continued his exercise class. My older daughter invited a friend over to calm her nerves. Piper was left fielding phones calls and wondering what in the heck happened to her well-organized support team -- needless to say she's whipped us all into shape since then.) But somehow we (and I mean all of us here, including you) know that we will find the strength to think a shiny new pair of lungs will be a great thing for our kids, when that time comes. We get better every day at living in the moment and at trusting that, as my husband said recently, "we don't know what will happen, but we do know that there will be a happy ending. That's our choice."
Thursday, February 25, 2010
Day in the (Transplant) Life
Disclaimer: With a couple of exceptions for Sampson and the view from my apt window, most of the below were taken at my hospital, under the unflattering light of an exam room, using an iphone. Suffice it to say these are slightly less than "glamor shot" conditions -- consider yourself warned.
So today my mother:
and me:
left this little guy behind:
and headed away from this view:
(all the while dragging this* with us):
until we finally reached this view, and all that comes with it
In other words, I had transplant clinic.
*For those of you wondering, this machine is my Sequal Eclipse 2 portable O2 concentrator. This is one of my all-time favorite pieces of equipment. It's (relatively) lightweight, it's on wheels, it has either pulse or continuous flow, and if it starts to run out all you have to do is plug it into the nearest outlet or switch out the battery. I have portable tanks too, esp. for working out or things that involve a lot of outdoor walking, but this machine is FANTASTIC for overnight trips, airplanes (FAA approved), and marathon appointment days at the hospital.
Not a whole lot to report. I apparently still need new lungs, and they are apparently still working on making that happen, hopefully sooner rather than later. I am starting IVs again today, but only one since I'm on inhaled TOBI already and we're going to hold off on IV tobra for a while. I did another 6MW test and dropped a couple hundred feet to around 1600, but I guess that's still not all that bad, especially considering that I'm in the middle of yet another exacerbation.
Um, yeah, this is my 3rd round of IVs for 2010, in case you're keeping score. And you know I hate useless comparisons, but it looks like 2010 is on track to be every bit as ridiculous IV wise as 2009, if not more so. Clearly I'm an IV junkie at this point and should be in some sort of 12-step program -- just so long as step 1 involves new lungs!
Anyway, IV madness aside, today really wasn't too overwhelming. I'm feeling more and more secure in my transplant team, and they've been very forthcoming and honest about where I stand on the list and what my options are. I know at this point in the game it's all about patience and just trying to live as much as possible until those perfect lungs come along. And I'm really hoping that the IVs I'm starting today will help with that too. Because let's be honest, it's a hell of a lot easier to be patient when you're not choking on your own breath half the time. Or maybe that's just my personal opinion.
Then again, coming home to a (snow-soaked) shorkie makes it a little easier too:
Much love for a wonderful weekend, beautiful people.
So today my mother:
and me:
left this little guy behind:
and headed away from this view:
(all the while dragging this* with us):
until we finally reached this view, and all that comes with it
In other words, I had transplant clinic.
*For those of you wondering, this machine is my Sequal Eclipse 2 portable O2 concentrator. This is one of my all-time favorite pieces of equipment. It's (relatively) lightweight, it's on wheels, it has either pulse or continuous flow, and if it starts to run out all you have to do is plug it into the nearest outlet or switch out the battery. I have portable tanks too, esp. for working out or things that involve a lot of outdoor walking, but this machine is FANTASTIC for overnight trips, airplanes (FAA approved), and marathon appointment days at the hospital.
Not a whole lot to report. I apparently still need new lungs, and they are apparently still working on making that happen, hopefully sooner rather than later. I am starting IVs again today, but only one since I'm on inhaled TOBI already and we're going to hold off on IV tobra for a while. I did another 6MW test and dropped a couple hundred feet to around 1600, but I guess that's still not all that bad, especially considering that I'm in the middle of yet another exacerbation.
Um, yeah, this is my 3rd round of IVs for 2010, in case you're keeping score. And you know I hate useless comparisons, but it looks like 2010 is on track to be every bit as ridiculous IV wise as 2009, if not more so. Clearly I'm an IV junkie at this point and should be in some sort of 12-step program -- just so long as step 1 involves new lungs!
Anyway, IV madness aside, today really wasn't too overwhelming. I'm feeling more and more secure in my transplant team, and they've been very forthcoming and honest about where I stand on the list and what my options are. I know at this point in the game it's all about patience and just trying to live as much as possible until those perfect lungs come along. And I'm really hoping that the IVs I'm starting today will help with that too. Because let's be honest, it's a hell of a lot easier to be patient when you're not choking on your own breath half the time. Or maybe that's just my personal opinion.
Then again, coming home to a (snow-soaked) shorkie makes it a little easier too:
Much love for a wonderful weekend, beautiful people.
Wednesday, February 24, 2010
Not a Clever Blog Post
Okay, so once again I find myself without any clever stories or deep thoughts, but with a nagging need to update this blog just to give you all some sense that I am still breathing, still surviving, still living (it's not the same thing), and still...well, waiting.
I am somewhat under the weather (which is rainy and gross), slightly under stimulated (because of the weather and the fact of being under the weather), and fully under the covers (at this moment, not all the time).
I am definitely over being sick (who isn't?), occasionally overwhelmed with the process (I'm told this is "normal"), and completely overjoyed for my friend Kelley (she received her new lungs Monday morning and is doing well).
I have emails to reply to, but I promise I still love you all.
I have phone calls that have gone unanswered due to coughing spells and breathless moments, but you will hear from me.
And no, the irony that I am keeping people waiting is not lost on me, in case you were wondering.
But, here's the deal: today I am going for a walk, I am going to do several treatments, I am going to rest and nap when I need to, I am going to pet my dog and I will let him win at tug of war, and then I will maybe read or write or work a crossword puzzle and chat with my mom and maybe a couple of friends. And then tonight, I am going to try and go out for dinner, just so long as the weather holds up and I'm not too much under it.
And then tomorrow I am going to go to my appointment, and rock my 6-minute walk test because I always do. The doctor will tell me that I need new lungs and I will agree with him. He will probably also tell me that I need to see my CF doc soon to get more IVs and I will agree with that as well. We will both be agreeable. And then I will go home and I will be exhausted and maybe coughing so hard again that my 30-minute frequencer session will end up taking over an hour (like it did this morning) and my mom will say (like she did this morning) that "at least you weren't up in the middle of the night vomiting" and I will say "yep, at least there's that." Because it's true. There's always something to feel good about, after all.
So the world will keep on turning every single day until I get this transplant, and then every single day after that, and who knows what will happen except that I will get up every morning try to remember that I am not surviving, I am living.
And as for today, I will go on a walk.
I am somewhat under the weather (which is rainy and gross), slightly under stimulated (because of the weather and the fact of being under the weather), and fully under the covers (at this moment, not all the time).
I am definitely over being sick (who isn't?), occasionally overwhelmed with the process (I'm told this is "normal"), and completely overjoyed for my friend Kelley (she received her new lungs Monday morning and is doing well).
I have emails to reply to, but I promise I still love you all.
I have phone calls that have gone unanswered due to coughing spells and breathless moments, but you will hear from me.
And no, the irony that I am keeping people waiting is not lost on me, in case you were wondering.
But, here's the deal: today I am going for a walk, I am going to do several treatments, I am going to rest and nap when I need to, I am going to pet my dog and I will let him win at tug of war, and then I will maybe read or write or work a crossword puzzle and chat with my mom and maybe a couple of friends. And then tonight, I am going to try and go out for dinner, just so long as the weather holds up and I'm not too much under it.
And then tomorrow I am going to go to my appointment, and rock my 6-minute walk test because I always do. The doctor will tell me that I need new lungs and I will agree with him. He will probably also tell me that I need to see my CF doc soon to get more IVs and I will agree with that as well. We will both be agreeable. And then I will go home and I will be exhausted and maybe coughing so hard again that my 30-minute frequencer session will end up taking over an hour (like it did this morning) and my mom will say (like she did this morning) that "at least you weren't up in the middle of the night vomiting" and I will say "yep, at least there's that." Because it's true. There's always something to feel good about, after all.
So the world will keep on turning every single day until I get this transplant, and then every single day after that, and who knows what will happen except that I will get up every morning try to remember that I am not surviving, I am living.
And as for today, I will go on a walk.
Friday, February 12, 2010
More Thoughts on Waiting
Note: the below text is a talk I gave last night at a wonderful CF fundraiser organized and chaired by a remarkable CF woman (and CF mom!) from one of the forums. She was kind enough to invite me to her event, and then asked that I share a few words about my story. I thought it fitting to repost here, but I have removed her name just to protect privacy.
L has given you all some great information about CF, but what I'd like to do now is tell you a story. And, like so many of my personal stories, this one begins in a doctor's office.
It was, I imagined, going to be a pretty routine clinic appointment. As I settled myself on the familiar exam table to await my doctor, I went over the specifics of this particular visit in my mind: PFTs down a point or two, might mean an oral antibiotic or some other slight tweak in the medication routine; my weight was too low, as always, so we might have to discuss the dreaded feeding tube issue once again; and otherwise nothing too remarkable. I swung my legs and fidgeted in the tiny clinic room, gearing up for what I knew was coming: the inevitable conversation about my increased need for IV antibiotics to fight infections in my lungs, and the implications of my decision to work full-time at a large law firm following my graduation from law school the previous May. It was now January of 2008, and while I sensed that things were changing with my CF, I had no idea just how much this seemingly run-of-the-mill clinic visit would change my life.
Transplant. It's a word most CFers are all too familiar with, at least as a concept if not as an actual reality. Since my teenage years, I had understood that lung transplant surgery was a last-resort option for people with advanced cystic fibrosis lung disease. I knew people who had undergone a transplant and had emerged smiling, full of life and healthy, vibrant breath supplied by their new lungs. But I was completely unprepared to hear the word applied to me and my disease, despite my personal understanding that my CF was progressing. And so, when my doctor took my hand and told me that she was recommending a referral for lung transplant evaluation, my first thought was, quite honestly, "for whom?" Because certainly she didn't mean me, the lawyer, or me, the daughter, sister, girlfriend, and friend. She couldn't mean me, the girl who loved to travel and be active and who adored her job. And then it hit me that she did, in fact, mean me, the CF patient.
It's funny how jarring news can sometimes work strange and wonderful things in my life, and it turned out that my referral for transplant was no exception to this rule. Immediately after learning the news, I began to seek out other CFers, figuring that I should get as many perspectives and as much support as possible during an otherwise confusing and difficult time. The issue, of course, was that CFers are rarely allowed to meet face-to-face because of the dangers of cross infection. A room full of CF patients might have offered me the support and help that I needed, but it would also be putting my health (and the health of others) in danger. But a chat room full of CF patients? Well, that's an entirely different story. And so it was that I stumbled into the online CF community, where I was lucky enough to meet L and others like her -- members of a unique collective of 30,000 + people in this country living with this disease, dependent on the medical advancements and new treatments made possible through the CFF and lung transplantation, and surviving on hope for a cure that suddenly seems not so far fetched thanks to cutting edge research and truly remarkable science. These were the people who helped coach me through my evaluation for lung transplant, who continue to support me as I've gotten sicker with CF, and who will celebrate with me when I finally receive the oh-so-precious gift of life.
So how could I resist the chance to come and meet one of these remarkable women in person? And when L asked me to share a little bit about transplant and my personal CF story, I was both humbled and excited. Which is fitting, I guess, because right now is a time that truly is both humbling and exciting for all of us out there fighting so hard against cystic fibrosis. There are new drugs on the horizon that show amazing promise in correcting the ion transport at the heart of the CF defect, potentially offering CFers with less advanced lung damage the possibility of life beyond this disease as we've always known it. And advancements in lung transplant offer those of us whose lungs have suffered more damage the hope that we too may soon breathe without our current limitations. Neither option is a cure, in the true sense of the word, but both paths seem to lead to a world where CF might have a new and different meaning, and all of it thanks to the continued dedication of the scientists, the doctors, the donors and the fundraisers, and the Cystic Fibrosis Foundation.
I guess the moral of the story is that all of us are, in a sense, waiting -- L and I, and the thousands of other CF patients and their families. We fight and we wait: for new lungs; for new treatments; for the chance to see our loved ones who have died of this disease once again; and, just as I waited that fateful day in the clinic office, for the news that will forever change our world.
I thought this was a fitting response to my own late-night rantings about CF and waiting, in a way. And I also understand that there are many people out there with CF who are walking an entirely different path -- those who will not receive transplants, or who are awaiting the next stage of a journey that is all their own. And I guess the question always remains:
What are we waiting for?
L has given you all some great information about CF, but what I'd like to do now is tell you a story. And, like so many of my personal stories, this one begins in a doctor's office.
It was, I imagined, going to be a pretty routine clinic appointment. As I settled myself on the familiar exam table to await my doctor, I went over the specifics of this particular visit in my mind: PFTs down a point or two, might mean an oral antibiotic or some other slight tweak in the medication routine; my weight was too low, as always, so we might have to discuss the dreaded feeding tube issue once again; and otherwise nothing too remarkable. I swung my legs and fidgeted in the tiny clinic room, gearing up for what I knew was coming: the inevitable conversation about my increased need for IV antibiotics to fight infections in my lungs, and the implications of my decision to work full-time at a large law firm following my graduation from law school the previous May. It was now January of 2008, and while I sensed that things were changing with my CF, I had no idea just how much this seemingly run-of-the-mill clinic visit would change my life.
Transplant. It's a word most CFers are all too familiar with, at least as a concept if not as an actual reality. Since my teenage years, I had understood that lung transplant surgery was a last-resort option for people with advanced cystic fibrosis lung disease. I knew people who had undergone a transplant and had emerged smiling, full of life and healthy, vibrant breath supplied by their new lungs. But I was completely unprepared to hear the word applied to me and my disease, despite my personal understanding that my CF was progressing. And so, when my doctor took my hand and told me that she was recommending a referral for lung transplant evaluation, my first thought was, quite honestly, "for whom?" Because certainly she didn't mean me, the lawyer, or me, the daughter, sister, girlfriend, and friend. She couldn't mean me, the girl who loved to travel and be active and who adored her job. And then it hit me that she did, in fact, mean me, the CF patient.
It's funny how jarring news can sometimes work strange and wonderful things in my life, and it turned out that my referral for transplant was no exception to this rule. Immediately after learning the news, I began to seek out other CFers, figuring that I should get as many perspectives and as much support as possible during an otherwise confusing and difficult time. The issue, of course, was that CFers are rarely allowed to meet face-to-face because of the dangers of cross infection. A room full of CF patients might have offered me the support and help that I needed, but it would also be putting my health (and the health of others) in danger. But a chat room full of CF patients? Well, that's an entirely different story. And so it was that I stumbled into the online CF community, where I was lucky enough to meet L and others like her -- members of a unique collective of 30,000 + people in this country living with this disease, dependent on the medical advancements and new treatments made possible through the CFF and lung transplantation, and surviving on hope for a cure that suddenly seems not so far fetched thanks to cutting edge research and truly remarkable science. These were the people who helped coach me through my evaluation for lung transplant, who continue to support me as I've gotten sicker with CF, and who will celebrate with me when I finally receive the oh-so-precious gift of life.
So how could I resist the chance to come and meet one of these remarkable women in person? And when L asked me to share a little bit about transplant and my personal CF story, I was both humbled and excited. Which is fitting, I guess, because right now is a time that truly is both humbling and exciting for all of us out there fighting so hard against cystic fibrosis. There are new drugs on the horizon that show amazing promise in correcting the ion transport at the heart of the CF defect, potentially offering CFers with less advanced lung damage the possibility of life beyond this disease as we've always known it. And advancements in lung transplant offer those of us whose lungs have suffered more damage the hope that we too may soon breathe without our current limitations. Neither option is a cure, in the true sense of the word, but both paths seem to lead to a world where CF might have a new and different meaning, and all of it thanks to the continued dedication of the scientists, the doctors, the donors and the fundraisers, and the Cystic Fibrosis Foundation.
I guess the moral of the story is that all of us are, in a sense, waiting -- L and I, and the thousands of other CF patients and their families. We fight and we wait: for new lungs; for new treatments; for the chance to see our loved ones who have died of this disease once again; and, just as I waited that fateful day in the clinic office, for the news that will forever change our world.
I thought this was a fitting response to my own late-night rantings about CF and waiting, in a way. And I also understand that there are many people out there with CF who are walking an entirely different path -- those who will not receive transplants, or who are awaiting the next stage of a journey that is all their own. And I guess the question always remains:
What are we waiting for?
Thursday, February 11, 2010
Stream of Consciousness Post #2
last day of ivs and first day of freedom. hot showers, extra hours, maybe time to stop and smell the flowers.
not roses though. i'm sick of those.
having trouble accepting some of the little things that i'm supposed to take without question. i worry about stuff that doesn't seem to bother anyone else, like what i'll do when i'm suddenly not seeing my cf doctor anymore. feeling kind of like some overgrown adolescent (but then again, who doesn't, really?) because of all this change and my reaction to it. it's almost physical, or i'm sure it would be if there were energy left to have a physical reaction. pages and pages and pages of journal filled with . . . thoughts? questions? whining? i'm not even sure where the deep musings end and the complaining begins anymore. and in the end maybe that's the kind of insight illness give us: the freedom to take ourselves way too seriously.
people all around telling me to just be patient. i want to tell them that i'm the ultimate patient -- 28 years and counting. patience is a virtue, i guess, but lately it seems like patients are just a burden. and i'm so sick of all the waiting: waiting rooms, waiting lists, waiting around, waiting to exhale. i've become a cliche or a sleight of the tongue -- a sick patient who is sick of being patient.
and i know i'm one of the lucky ones.
i'm so lucky to be alive, lucky to have friends and family who support me, lucky to have healthcare, lucky to love my doctor, lucky to have lungs that can choose to work when they feel like it, lucky to have drugs to keep the monsters at bay -- my own personal three-week cootie shot. so very, very lucky to have time left to wait.
it's kind of a thin line between lucky and sucky, when you think about it.
and so tonight i'll keep my vigil, count my blessings, and fall asleep to the whoosh of the oxygen concentrator once again. and tomorrow i'll do more of the same, only different. because each dawn is a new day, and patient's is an underrated state of mind.
not roses though. i'm sick of those.
having trouble accepting some of the little things that i'm supposed to take without question. i worry about stuff that doesn't seem to bother anyone else, like what i'll do when i'm suddenly not seeing my cf doctor anymore. feeling kind of like some overgrown adolescent (but then again, who doesn't, really?) because of all this change and my reaction to it. it's almost physical, or i'm sure it would be if there were energy left to have a physical reaction. pages and pages and pages of journal filled with . . . thoughts? questions? whining? i'm not even sure where the deep musings end and the complaining begins anymore. and in the end maybe that's the kind of insight illness give us: the freedom to take ourselves way too seriously.
people all around telling me to just be patient. i want to tell them that i'm the ultimate patient -- 28 years and counting. patience is a virtue, i guess, but lately it seems like patients are just a burden. and i'm so sick of all the waiting: waiting rooms, waiting lists, waiting around, waiting to exhale. i've become a cliche or a sleight of the tongue -- a sick patient who is sick of being patient.
and i know i'm one of the lucky ones.
i'm so lucky to be alive, lucky to have friends and family who support me, lucky to have healthcare, lucky to love my doctor, lucky to have lungs that can choose to work when they feel like it, lucky to have drugs to keep the monsters at bay -- my own personal three-week cootie shot. so very, very lucky to have time left to wait.
it's kind of a thin line between lucky and sucky, when you think about it.
and so tonight i'll keep my vigil, count my blessings, and fall asleep to the whoosh of the oxygen concentrator once again. and tomorrow i'll do more of the same, only different. because each dawn is a new day, and patient's is an underrated state of mind.
Wednesday, January 20, 2010
Stream of Consciousness Post #1
it's 2:30 in the morning and still no call tonight. or this morning. i've managed to convince myself that the call will come at 2 am, probably because someone i know had a dry run around that time in the morning. but i had two dry runs and they both came in the afternoon. does that mean i count other people's experiences as more real than my own? and what is real anyway, when you're waiting, suspended, not moving, in line? take a number and have a seat, oxygen machine is to your left and bathrooms are down the hall -- transplant is the ultimate waiting room.
i'm not even sure what i'm waiting for honestly. lungs, of course, but what does that mean? what will they feel like inside my body? will i miss my old lungs? feel like a part of me is lost? will the new lungs miss their old body as well? will they be homesick inside the foreign country of my chest, suspended from my airways, breathing in my oxygen, surrounded by cells that would kill them if they weren't so high on immuno-suppressants? it doesn't exactly sound like my idea of a fun vacation, much less a permanent move. but they'll like their new home, like me, surely -- they have to. come on, everybody likes me, right? just remember to trust and to be grateful. second chance at life. second chance at breathing. first chance with healthy lungs. last chance . . . ?
so many "lasts" in my life right now. last time my old lungs will ever leave the united states. last time i was home in colorado, among the mountains with the lungs that were born there. last day at work. last time i'm gonna cry about any of this, i promise. last time i'm gonna ask how long this waiting can possibly last. probably not the last time i'm gonna have to remind myself that i'm trying.
trying to live for today and plan for tomorrow. trying to ignore the hurt and worry in everyone's voices, the whispered conversations on the phone. trying to pretend like i understand everything, that i get what's happening to me and why. trying to just live and laugh and love and be with my puppy and keep up with my friends and not ruin my relationships because sometimes i just don't have the energy to respond to all those emails or the phone calls or even the voicemails and i'm sorry, i'm sorry, i'm so very, very sorry. trying to be upbeat and optimistic and trying not to let anything get me down, then trying to be kind to myself and really feel my emotions, even the negative ones. trying to breathe. trying to breathe. trying to just. fucking. breathe. already.
i just want the phone to ring. or not. maybe not. not yet, not tonight. but i do, i know i do. i'm ready for this, i need this. i'm just scared. everyone gets scared, they told me that. it's normal. i'm normal. except for the ways that i'm not, of course, which are really the most important things right now. transplant isn't normal. being 28 and being on the lung transplant list is not normal. but it's normal for us, normal in our world. i fit right in among the abnormal people, anyway.
it's nice to have a place.
2:53 now. 53 minutes from when i should have gotten the call and time to say goodnight.
goodnight CF, goodnight blog.
goodnight new york and goodnight dog.
goodnight treatments and O2.
goodnight, goodnight to all of you.
i'm not even sure what i'm waiting for honestly. lungs, of course, but what does that mean? what will they feel like inside my body? will i miss my old lungs? feel like a part of me is lost? will the new lungs miss their old body as well? will they be homesick inside the foreign country of my chest, suspended from my airways, breathing in my oxygen, surrounded by cells that would kill them if they weren't so high on immuno-suppressants? it doesn't exactly sound like my idea of a fun vacation, much less a permanent move. but they'll like their new home, like me, surely -- they have to. come on, everybody likes me, right? just remember to trust and to be grateful. second chance at life. second chance at breathing. first chance with healthy lungs. last chance . . . ?
so many "lasts" in my life right now. last time my old lungs will ever leave the united states. last time i was home in colorado, among the mountains with the lungs that were born there. last day at work. last time i'm gonna cry about any of this, i promise. last time i'm gonna ask how long this waiting can possibly last. probably not the last time i'm gonna have to remind myself that i'm trying.
trying to live for today and plan for tomorrow. trying to ignore the hurt and worry in everyone's voices, the whispered conversations on the phone. trying to pretend like i understand everything, that i get what's happening to me and why. trying to just live and laugh and love and be with my puppy and keep up with my friends and not ruin my relationships because sometimes i just don't have the energy to respond to all those emails or the phone calls or even the voicemails and i'm sorry, i'm sorry, i'm so very, very sorry. trying to be upbeat and optimistic and trying not to let anything get me down, then trying to be kind to myself and really feel my emotions, even the negative ones. trying to breathe. trying to breathe. trying to just. fucking. breathe. already.
i just want the phone to ring. or not. maybe not. not yet, not tonight. but i do, i know i do. i'm ready for this, i need this. i'm just scared. everyone gets scared, they told me that. it's normal. i'm normal. except for the ways that i'm not, of course, which are really the most important things right now. transplant isn't normal. being 28 and being on the lung transplant list is not normal. but it's normal for us, normal in our world. i fit right in among the abnormal people, anyway.
it's nice to have a place.
2:53 now. 53 minutes from when i should have gotten the call and time to say goodnight.
goodnight CF, goodnight blog.
goodnight new york and goodnight dog.
goodnight treatments and O2.
goodnight, goodnight to all of you.
Friday, January 15, 2010
Couch Confessions
Picture, if you will dear readers, a quiet evening at home in a cozy, downtown New York apartment. A cup of tea, maybe, and the faint scent of a home-cooked dinner still lingering in the air. Imagine a young woman, sleepily lounging on the sofa, a book open in her lap and a contented shorkie puppy nuzzled close to her curled up legs, as nearby her mother sits working the New York Times crossword. Enchanted by this comfortable scene and the knowledge that his favorite people are close at hand (er, make that paw), the shorkie lifts his muppet-like head and gives the puppy equivalent of a smile. He resettles himself, laying his head carefully across the young woman's feet, and gives a deep, long, and rather loud sigh . . .
. . . at which point he is promptly kicked off the couch.
Okay, look, I know what you're thinking. This is bad. I mean seriously, what kind of dog owner kicks her sweet, adorable, loving puppy off of the couch for something as innocent as a sigh? Surely there aren't actually people out there cruel enough to pull a stunt like that, and if there are then such people are most likely out lurking in dark alleys and searching for small kittens to torture, not sitting at home drinking chamomile tea and reading David Sedaris. (Actually, on second thought, such people probably do read David Sedaris, most likely in unhealthily large quantities. But I'm sure they do it in far less idyllic settings.) In short, I'm sure most of you find the idea of interrupting a dog's sleep and forcing him from his comfy nest because of a simple sigh to be a pretty disgusting turn of events, as well you should. And I assure you, it was.
But in my defense, I happen to have a very low couch. And I didn't really so much kick him off as I did nudge him to the edge with my foot, at which point, sensing he was no longer welcome, Sampson jumped off of his own volition. He certainly wasn't hurt, and he frankly didn't seem all that sad. In fact, he seemed angry, and for good reason. He favored me with rather scornful look (punctuated by a derisive snort most often reserved for the rare occasions when he finds his water bowl empty or is denied a treat before bedtime -- universal shorkie code for "you should be ashamed of yourself"), and promptly stalked off to greener pastures (i.e., the warm spot near my window heaters). I, on the other hand, was left on the couch, fully aware of the ridiculousness of my actions and forced, at last, to face what has become an undeniable, if slightly disturbing, truth:
I have lung envy.
Okay, if I'm honest, I'd have to admit that this isn't really a new development. For years I have watched with awe as my friends performed simple, everyday actions like laughing, climbing stairs, yawning, and yes, sighing with what seemed to me to be an almost ridiculous lack of effort. "Is laughing even fun when you get to do it without thinking?" I wondered, marveling at the force of their eruptions and waiting in vain for the coughing fit I felt sure they would eventually experience. "Where's the sense of triumph?" I asked again, as a friend blew out all 26 flaming candles on her cake without so much as a hint of exertion. "Surely these people are missing the true meaning of climbing this hill," I consoled myself through gritted teeth as the rest of the group tromped ahead to the concert venue, assuring me that they would save seats as they gallantly pulled the heavy picnic basket out of my grasp as though it were nothing. And so I continued up the steep incline, slowly making my way toward my friends' fading voices, periodically stopping to appreciate the beautiful Colorado mountains in the distance and the lovely wild flowers -- before I was forced to spit among their blooms. True meaning, indeed.
It's only been recently, though, that I've actually found myself jealous of other people's lungs. The other day, for example, I caught myself staring at a young child who was throwing a tantrum. Not just looking over with a shake of my head and a sympathetic glance at the exhausted mother, mind you, but full-on, open-mouthed staring for a good minute or so. This was not because I disapproved of the child's behavior; it was the sheer intensity of his screams and wails that caught my attention. Because seriously, how does a boy of five, who probably weighs 50 pounds soaking wet, manage to sustain a perfect exhalation for well over 30 seconds? And so I stood, eyes wide in sheer admiration for this behaviorally challenged but perfectly healthy little boy, until the faint hiss of my O2 tank brought me back to reality.
Please don't get me wrong. I'm obviously not saying that I want everyone else to have lung disease, too. I would, of course, prefer that nobody have lung disease, even if it means the world will have to put up with a few more wailing toddlers (or, worse yet, wailing adults, because I have to admit that I've been to a few karaoke bars where, after an hour or two, the idea of widespread lung damage doesn't seem like such a horrible thing). And most of the time I'm able to keep my envy in check, at least to the point where I can appreciate the long sighs and giggles of others and hope that one day soon I can join in the chorus. Without coughing, of course.
In the meantime, though, I guess I owe my puppy (and his beautiful, healthy lungs) an apology. Don't worry -- I made it up to him with an extra long belly rub, during which he decided to press his luck and let out several sighs and snorts of varying intensity. He even punctuated his performance by sneezing on my hand, which I guess he thought was a fitting revenge for earlier events. But I took it all with good humor, and held tight to an image of Sammy and I together again on the couch, sighing in perfect unison as we contemplate the beauty of a perfect New York evening with perfect lungs.
. . . at which point he is promptly kicked off the couch.
Okay, look, I know what you're thinking. This is bad. I mean seriously, what kind of dog owner kicks her sweet, adorable, loving puppy off of the couch for something as innocent as a sigh? Surely there aren't actually people out there cruel enough to pull a stunt like that, and if there are then such people are most likely out lurking in dark alleys and searching for small kittens to torture, not sitting at home drinking chamomile tea and reading David Sedaris. (Actually, on second thought, such people probably do read David Sedaris, most likely in unhealthily large quantities. But I'm sure they do it in far less idyllic settings.) In short, I'm sure most of you find the idea of interrupting a dog's sleep and forcing him from his comfy nest because of a simple sigh to be a pretty disgusting turn of events, as well you should. And I assure you, it was.
But in my defense, I happen to have a very low couch. And I didn't really so much kick him off as I did nudge him to the edge with my foot, at which point, sensing he was no longer welcome, Sampson jumped off of his own volition. He certainly wasn't hurt, and he frankly didn't seem all that sad. In fact, he seemed angry, and for good reason. He favored me with rather scornful look (punctuated by a derisive snort most often reserved for the rare occasions when he finds his water bowl empty or is denied a treat before bedtime -- universal shorkie code for "you should be ashamed of yourself"), and promptly stalked off to greener pastures (i.e., the warm spot near my window heaters). I, on the other hand, was left on the couch, fully aware of the ridiculousness of my actions and forced, at last, to face what has become an undeniable, if slightly disturbing, truth:
I have lung envy.
Okay, if I'm honest, I'd have to admit that this isn't really a new development. For years I have watched with awe as my friends performed simple, everyday actions like laughing, climbing stairs, yawning, and yes, sighing with what seemed to me to be an almost ridiculous lack of effort. "Is laughing even fun when you get to do it without thinking?" I wondered, marveling at the force of their eruptions and waiting in vain for the coughing fit I felt sure they would eventually experience. "Where's the sense of triumph?" I asked again, as a friend blew out all 26 flaming candles on her cake without so much as a hint of exertion. "Surely these people are missing the true meaning of climbing this hill," I consoled myself through gritted teeth as the rest of the group tromped ahead to the concert venue, assuring me that they would save seats as they gallantly pulled the heavy picnic basket out of my grasp as though it were nothing. And so I continued up the steep incline, slowly making my way toward my friends' fading voices, periodically stopping to appreciate the beautiful Colorado mountains in the distance and the lovely wild flowers -- before I was forced to spit among their blooms. True meaning, indeed.
It's only been recently, though, that I've actually found myself jealous of other people's lungs. The other day, for example, I caught myself staring at a young child who was throwing a tantrum. Not just looking over with a shake of my head and a sympathetic glance at the exhausted mother, mind you, but full-on, open-mouthed staring for a good minute or so. This was not because I disapproved of the child's behavior; it was the sheer intensity of his screams and wails that caught my attention. Because seriously, how does a boy of five, who probably weighs 50 pounds soaking wet, manage to sustain a perfect exhalation for well over 30 seconds? And so I stood, eyes wide in sheer admiration for this behaviorally challenged but perfectly healthy little boy, until the faint hiss of my O2 tank brought me back to reality.
Please don't get me wrong. I'm obviously not saying that I want everyone else to have lung disease, too. I would, of course, prefer that nobody have lung disease, even if it means the world will have to put up with a few more wailing toddlers (or, worse yet, wailing adults, because I have to admit that I've been to a few karaoke bars where, after an hour or two, the idea of widespread lung damage doesn't seem like such a horrible thing). And most of the time I'm able to keep my envy in check, at least to the point where I can appreciate the long sighs and giggles of others and hope that one day soon I can join in the chorus. Without coughing, of course.
In the meantime, though, I guess I owe my puppy (and his beautiful, healthy lungs) an apology. Don't worry -- I made it up to him with an extra long belly rub, during which he decided to press his luck and let out several sighs and snorts of varying intensity. He even punctuated his performance by sneezing on my hand, which I guess he thought was a fitting revenge for earlier events. But I took it all with good humor, and held tight to an image of Sammy and I together again on the couch, sighing in perfect unison as we contemplate the beauty of a perfect New York evening with perfect lungs.
Monday, January 4, 2010
(Re)Discovering Myself
So this evening I was flipping through some of my usual suspects of CF/transplant blogs to see how everyone's doing, learn lessons, get inspired, whatever, and I came across something that literally stopped me in my tracks -- namely, an entry posted on my friend Leah's blog by her wonderful husband. I don't have permission to link it here or else I definitely would, but Leah is a beautiful post-tx CFer who received her new lungs 3 weeks ago at Stanford (and was home for Christmas in what had to be one of the most awesome recoveries of all time!). And today her husband posted a quick update about life 3 weeks after the gift of, well, life.
The thing that touched me the most was his sheer joy at watching his wife live with healthy, non-CF lungs. And he drove the point home with his observation that there are aspects of her personality that have been hidden behind her progressing disease and are now, to his obvious delight, reemerging. It literally brought tears to my eyes -- such a moving and well-put tribute to Leah's enduring spirit and her ability to heal, to find her way back to herself through the grace of a generous organ donor and her faith. To say the least, I was humbled and inspired by what I'm sure for them was just a run-of-the-mill blog entry. So thanks go out to Seth and Leah for once again giving me that awesome tingly feeling.
I have to say that Leah's blog also made me think, big time. It made me think about illness and its effects, not only on our bodies but also on the other, less tangible aspects of ourselves. It made me think, specifically, about my own personality and the ways that it has changed since becoming "sick[er]" with CF -- for the better or maybe for worse, but maybe just also in neutral ways. It made me think about how hard most of us with chronic illness work to make statements like "CF doesn't define me" and "I have CF; CF does not have me." Statements that we absolutely mean. But then I think about other statements I have heard from post-tx CFers about how transplant allowed them the chance to be the person they were always meant to be, or allowed them to recover a piece of themselves that they thought had gone missing. Statements that are also 100% true. Statements that, honestly, make me sooo excited for the future and my life with new lungs.
Let me say this: I have tried, to the best of my personal ability, to be one of those CFers who can proudly proclaim that I am NOT defined by CF. And I'm not, honestly, because there is just so much more to me than coughing fits or late night treatments or accessed ports or steroid pills. So much of me that quite frankly has nothing to do with any of that. And so I've gone to sometimes great (and occasionally stupid, not gonna lie) lengths to prove that I was and am somehow "stronger" than this disease, at least in mind and spirit if not always in body. And as I've gotten sicker, I've clung even more intensely to my knowledge that who I am cannot be worn down by this disease. No matter what happens, no matter if I end up getting a transplant or not, no matter what the ultimate outcome, I truly believe and know that I am and will always still be Piper -- I will always be more defined by the way I lived my life than by the obstacles that I faced while doing it.
All that said, I think it would be sugarcoating CF to pretend like it hasn't taken its toll on my personality, especially in the past few years. There, I said it. My name is Piper and I'm not 100% perfect -- go figure. Because as much as I try and believe and hope, as much as I know that I'm strong and I think that I'm pretty darn good at the whole "positive attitude even in the face of a whole wheelbarrow full of CF bull****" thing, I still know that, like many of my friends out there in real life and in cyberspace, there are in fact aspects of my personality that don't get to come through as often now that I'm dealing with being "sick" almost full time. It's not because I'm purposefully suppressing these parts of myself; it's just that so much of my physical energy now goes toward the necessary (the treatments, the exercise, the appointments, the resting), and so much of my mental energy goes toward the preparation, and the waiting, and the realities of being, well, really sick -- I can't honestly sit here and say (er, type) to you that I haven't had to let a few things slide to the wayside.
For the most part, I try to hold onto the parts of myself that I cherish. I try to take at least a little time every day to do something to remind myself that I'm human, and more than just a disease or a number on a waiting list. When I have extra energy, this is simple: a visit with friends or dinner out or a walk with my dog can make all the difference in the world. When my body is sapped from antibiotics and steroid-induced insomnia and coughing, it's a little tougher, but a good book or some time spent writing or painting, or even a game of scrabble and dinner in with my mom and sister will lift my spirits when I feel trapped in my apartment and tied to my O2. So that only leaves the days when I'm wracked with fevers or infection, and on those days I just try to remember that I'm surrounded by love. And I'm pretty sure that when John and Paul sat writing the lyrics "all you need is love" they had no idea how applicable the words would be to a bunch of crazy cystics all waiting on a transplant list. Just sayin'.
So I guess as much as I want to believe that my spirit and personality are stronger than cystic fibrosis -- as much as I tell myself that this disease can attack my body but will never touch who I am inside -- I have to admit that there's a part of me aching to see what aspects of myself "reemerge" in a sense after transplant. And I'm reminded of what my sister said as my family of four left the hospital after our initial meeting with the transplant team in May of 2008. As we huddled, overwhelmed and exhausted, in the corner of the crowded hospital elevator, Erin turned to the rest of us and demonstrated, once again, her unflagging optimism: "just think," she said, "ten years ago this might not even have been an option. And now we're going to get the chance to see Piper able to do things she hasn't been able to do in a long time!"
At the time, of course, we all thought she meant physically, but now I'm not so sure. What I do know, though, is that I couldn't be more excited to find out.
The thing that touched me the most was his sheer joy at watching his wife live with healthy, non-CF lungs. And he drove the point home with his observation that there are aspects of her personality that have been hidden behind her progressing disease and are now, to his obvious delight, reemerging. It literally brought tears to my eyes -- such a moving and well-put tribute to Leah's enduring spirit and her ability to heal, to find her way back to herself through the grace of a generous organ donor and her faith. To say the least, I was humbled and inspired by what I'm sure for them was just a run-of-the-mill blog entry. So thanks go out to Seth and Leah for once again giving me that awesome tingly feeling.
I have to say that Leah's blog also made me think, big time. It made me think about illness and its effects, not only on our bodies but also on the other, less tangible aspects of ourselves. It made me think, specifically, about my own personality and the ways that it has changed since becoming "sick[er]" with CF -- for the better or maybe for worse, but maybe just also in neutral ways. It made me think about how hard most of us with chronic illness work to make statements like "CF doesn't define me" and "I have CF; CF does not have me." Statements that we absolutely mean. But then I think about other statements I have heard from post-tx CFers about how transplant allowed them the chance to be the person they were always meant to be, or allowed them to recover a piece of themselves that they thought had gone missing. Statements that are also 100% true. Statements that, honestly, make me sooo excited for the future and my life with new lungs.
Let me say this: I have tried, to the best of my personal ability, to be one of those CFers who can proudly proclaim that I am NOT defined by CF. And I'm not, honestly, because there is just so much more to me than coughing fits or late night treatments or accessed ports or steroid pills. So much of me that quite frankly has nothing to do with any of that. And so I've gone to sometimes great (and occasionally stupid, not gonna lie) lengths to prove that I was and am somehow "stronger" than this disease, at least in mind and spirit if not always in body. And as I've gotten sicker, I've clung even more intensely to my knowledge that who I am cannot be worn down by this disease. No matter what happens, no matter if I end up getting a transplant or not, no matter what the ultimate outcome, I truly believe and know that I am and will always still be Piper -- I will always be more defined by the way I lived my life than by the obstacles that I faced while doing it.
All that said, I think it would be sugarcoating CF to pretend like it hasn't taken its toll on my personality, especially in the past few years. There, I said it. My name is Piper and I'm not 100% perfect -- go figure. Because as much as I try and believe and hope, as much as I know that I'm strong and I think that I'm pretty darn good at the whole "positive attitude even in the face of a whole wheelbarrow full of CF bull****" thing, I still know that, like many of my friends out there in real life and in cyberspace, there are in fact aspects of my personality that don't get to come through as often now that I'm dealing with being "sick" almost full time. It's not because I'm purposefully suppressing these parts of myself; it's just that so much of my physical energy now goes toward the necessary (the treatments, the exercise, the appointments, the resting), and so much of my mental energy goes toward the preparation, and the waiting, and the realities of being, well, really sick -- I can't honestly sit here and say (er, type) to you that I haven't had to let a few things slide to the wayside.
For the most part, I try to hold onto the parts of myself that I cherish. I try to take at least a little time every day to do something to remind myself that I'm human, and more than just a disease or a number on a waiting list. When I have extra energy, this is simple: a visit with friends or dinner out or a walk with my dog can make all the difference in the world. When my body is sapped from antibiotics and steroid-induced insomnia and coughing, it's a little tougher, but a good book or some time spent writing or painting, or even a game of scrabble and dinner in with my mom and sister will lift my spirits when I feel trapped in my apartment and tied to my O2. So that only leaves the days when I'm wracked with fevers or infection, and on those days I just try to remember that I'm surrounded by love. And I'm pretty sure that when John and Paul sat writing the lyrics "all you need is love" they had no idea how applicable the words would be to a bunch of crazy cystics all waiting on a transplant list. Just sayin'.
So I guess as much as I want to believe that my spirit and personality are stronger than cystic fibrosis -- as much as I tell myself that this disease can attack my body but will never touch who I am inside -- I have to admit that there's a part of me aching to see what aspects of myself "reemerge" in a sense after transplant. And I'm reminded of what my sister said as my family of four left the hospital after our initial meeting with the transplant team in May of 2008. As we huddled, overwhelmed and exhausted, in the corner of the crowded hospital elevator, Erin turned to the rest of us and demonstrated, once again, her unflagging optimism: "just think," she said, "ten years ago this might not even have been an option. And now we're going to get the chance to see Piper able to do things she hasn't been able to do in a long time!"
At the time, of course, we all thought she meant physically, but now I'm not so sure. What I do know, though, is that I couldn't be more excited to find out.
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