I like to come on here every once and a while and brag about my family. This is, of course, partly because my entire family is pretty much awesome, and I love them.
The other reason I like to brag, though, is a little more selfish. You see, I happen to have a family that is 100% committed to combating, controlling, and yes, to eventually curing cystic fibrosis. Not only do these wonderful folks donate money any time they can to this cause and support me through thick and thin with the disease, but they also serve as volunteers with the CFF, they get out and walk to raise awareness, they spread hope and prayers and love to just about everyone in their communities (but also to families dealing with CF), they serve on boards and chair committees, and perhaps most importantly: they continue to ask.
My father likes to say that "making the ask" is the most important part of curing this disease. Recently I heard him speak at the CFF's Greater New York Chapter Bi-Annual Scientific Update. This was a wonderful event put on by the amazing staff at the GNY Chapter to help answer questions about the sometimes crazy weird science that accompanies this disease we all consider to be a part of daily life. The program featured CFF Vice-President for Clinical Affairs, Dr. Bruce Marshall, and Emily Schaller (founder of the awesome Rock CF Foundation), both of whom gave testimony to the amazing new class of drugs out there that will treat the underlying defect of cystic fibrosis -- that amazing triple-punch combo of Ataluran (nonsense mutations), VX-770 (currently for G551D, though may have wider use), and VX-809 (DF508); and the new drugs like VX-661 that are just entering development.
These are awesome new drugs guys, and they work. We know that. We know that they do at least some of what they are supposed to do. We know that we are closer than ever to figuring how they work best, who they work for, and what might work better down the line. To that end, the CFF continues to do studies, pledge money, and move forward in solving this equation that we worked so hard to figure out in the first place.
I say "we" there because this really has been a collective effort. 56 years ago when a group of CF parents and loved ones came together to say they'd had enough of their children's fatal disease being ignored or unfunded, one might have said that it was them against the world. As recently as the early 1980s, the CFF had a working budget of about $1 million dollars to wipe out one of the most deadly and most common genetic illnesses in the US. The numbers have grown quite a bit since then (and, not coincidentally, so has the science and the treatments and the life expectancy), but one thing hasn't changed at all: this is still a community-based effort -- OUR effort, guys -- that relies 100% on donor funding.
So WE are super close, but WE'RE not really there yet. There's a lot of stuff to be done, including studies that take a lot of money and a lot of help. And that guys, is where WE get to come in again. Because something my dad said in his speech the other night really stuck with me, and I think it's worth sharing here:
"We are no longer looking to invent the lightbulb or to find the light at the end of the tunnel. We've done that. All we need now is money to fuel our lamp. And we have to realize that in our future either one of two things is going to happen:
Either we will have to end each day knowing that someone out there is saying goodnight and goodbye to a child, a sibling, a loved one, or a friend with this disease;
Or together, WE can say goodnight, goodbye, and GOOD RIDDANCE to cystic fibrosis."
I think right then was the moment I decided to stop asking what a cure could do for me. Instead, to paraphrase our late President John F. Kennedy, I think it's time we start seriously asking ourselves what WE can do for a cure. And hey, while you're asking yourself, why not ask a couple of friends as well? And why not ask them to ask a couple of others? Because I'm pretty sure most of you guys out there have friends and loved ones, and I'm pretty sure most of them do too. And I'm sure you get where I'm going with this, because while no gift is ever too small to accept, it is equally true that no gift should ever be big enough to make us stop asking until this disease is cured.
So what I'm asking you guys to do is this:
Get involved in your own health and your own cure. Different people are going to do this in different ways, obviously, but I think the main message is that we should not wait to see what other people, other groups, and other treatments are going to do for us. WE need to be the ones out there spreading this awareness. WE need to take the information about our disease to the next level if it's not good enough yet (and here's a hint, it's not). WE need to seek out and participate in these studies as much as possible. WE need to keep on it and get out there. WE need to give whatever we can in the form of time, energy, money, space, whatever to get this job done. There's no one specific action that I'm asking you guys to take here. I know circumstances vary. But I am asking -- pleading, beseeching, begging -- that each and every one of you take a second (or maybe even a blog?) and try to figure out a way that you personally can be more involved in your own community and in the fight(s) for the cause(s) you believe in.
Because WE as CFers, as people, as a world, simply cannot wait for the cures that will save us.
WE have to be them.
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 Fundraising. Show all posts
Showing posts with label Fundraising. Show all posts
Saturday, October 8, 2011
Monday, May 30, 2011
The Challenge of a LIFETIME
Some things in life just don't come along often.
For example, it is extremely rare for me to start off a thought, sentence, or blog post with the sentiment, "One of the reasons that I'm happy I have CF is . . ." That's not to say that there aren't certain elements of having this disease -- and sharing this experience -- that I feel grateful for, but I am gonna go ahead and admit that I am not, in any real sense of the word, all that grateful to have been born with a fatal genetic disease. But, like any rule, there are exceptions, and this is one of them.
One of the reasons that I am happy I have CF is, I get to meet some awesome, incredible, inspiring, amazing, and downright fabulous people. People, for example, like all of you.
Or people like Mike Freemantle, whom I had the total honor of meeting a couple of weeks ago. And though Mike doesn't have cystic fibrosis himself, I still have to give credit where credit is due to CF for this meeting, because Mike is the kind of guy who . . . well, let's just say that Mike is a man of extreme energy. It's the kind of energy that leads people to push themselves, to challenge limitations, and to go beyond their own experience. In short, it's the kind of energy that connects everyone who has ever pressed against the outer realm of the extraordinary -- whether by illness or by choice or by anything in between.
Oh, yeah, and it's also the kind of energy that might lead someone to look at an ordinary road bike and think, "Hey, I think I'll hop on that sucker and take a leisurely 21 day coast-to-coast tour through 13 different states. And what the heck, maybe I'll raise about $50,000 for the Greater NY Chapter of the Cystic Fibrosis Foundation while I'm at it in honor of my friend (and fellow amazing rockstar) John. You know, just for kicks."
Right.
All of which leads us to yet another one of those amazing events that just flat-out doesn't come along often enough. Because this morning at the ridiculous hour of 6 AM, Mike and many of his supporters stood in the even more ridiculous sudden rain shower that swept across Times Square getting ready to launch what must have initially seemed to many people like the most ridiculous thing of all. One man, one bike, one big RV with the Great Strides/CFF logo proudly displayed, and more than a thousand miles between Mike and his final destination. But anyone who knows CF knows that the seemingly impossible is sometimes the most important, non-ridiculous goal of all. And anyone who knows Mike knows that the same is true about him. Because believe it or not he's done it before, and now he's decided to do it again.
Only this time, it's for all of us.
Below are a few pictures of the magic behind the madness (and the man behind the magic). Please, please, please check them out, then go to www.freematour.com to join and support Mike on his cross-country bike ride for a cure. He'll be keeping track of his experiences, his route, his pictures (the man has a camera strapped to his handlebars, people!) and, of course, his fundraising.
Because things like this just don't come along often -- and when they do we should all be so lucky as to have the chance to go along for the ride.
Only 13 states -- because he's an underachiever
Flier used to raise awareness of the cause
The one and only FREEMATOUR BUS in Times Square
Gosh, that's a handsome . . . logo. Um, yeah. The logo steals the show.
1 Bike, 1 Bus, 1 Rainy Horizon
"What, it's so wet that even Times Square is completely empty? Whatever. I've seen worse."
Start Your Engines
One small pedal push for Mike. One awesome push for CF awareness
For example, it is extremely rare for me to start off a thought, sentence, or blog post with the sentiment, "One of the reasons that I'm happy I have CF is . . ." That's not to say that there aren't certain elements of having this disease -- and sharing this experience -- that I feel grateful for, but I am gonna go ahead and admit that I am not, in any real sense of the word, all that grateful to have been born with a fatal genetic disease. But, like any rule, there are exceptions, and this is one of them.
One of the reasons that I am happy I have CF is, I get to meet some awesome, incredible, inspiring, amazing, and downright fabulous people. People, for example, like all of you.
Or people like Mike Freemantle, whom I had the total honor of meeting a couple of weeks ago. And though Mike doesn't have cystic fibrosis himself, I still have to give credit where credit is due to CF for this meeting, because Mike is the kind of guy who . . . well, let's just say that Mike is a man of extreme energy. It's the kind of energy that leads people to push themselves, to challenge limitations, and to go beyond their own experience. In short, it's the kind of energy that connects everyone who has ever pressed against the outer realm of the extraordinary -- whether by illness or by choice or by anything in between.
Oh, yeah, and it's also the kind of energy that might lead someone to look at an ordinary road bike and think, "Hey, I think I'll hop on that sucker and take a leisurely 21 day coast-to-coast tour through 13 different states. And what the heck, maybe I'll raise about $50,000 for the Greater NY Chapter of the Cystic Fibrosis Foundation while I'm at it in honor of my friend (and fellow amazing rockstar) John. You know, just for kicks."
Right.
All of which leads us to yet another one of those amazing events that just flat-out doesn't come along often enough. Because this morning at the ridiculous hour of 6 AM, Mike and many of his supporters stood in the even more ridiculous sudden rain shower that swept across Times Square getting ready to launch what must have initially seemed to many people like the most ridiculous thing of all. One man, one bike, one big RV with the Great Strides/CFF logo proudly displayed, and more than a thousand miles between Mike and his final destination. But anyone who knows CF knows that the seemingly impossible is sometimes the most important, non-ridiculous goal of all. And anyone who knows Mike knows that the same is true about him. Because believe it or not he's done it before, and now he's decided to do it again.
Only this time, it's for all of us.
Below are a few pictures of the magic behind the madness (and the man behind the magic). Please, please, please check them out, then go to www.freematour.com to join and support Mike on his cross-country bike ride for a cure. He'll be keeping track of his experiences, his route, his pictures (the man has a camera strapped to his handlebars, people!) and, of course, his fundraising.
Because things like this just don't come along often -- and when they do we should all be so lucky as to have the chance to go along for the ride.
Only 13 states -- because he's an underachiever
Flier used to raise awareness of the cause
The one and only FREEMATOUR BUS in Times Square
Gosh, that's a handsome . . . logo. Um, yeah. The logo steals the show.
1 Bike, 1 Bus, 1 Rainy Horizon
"What, it's so wet that even Times Square is completely empty? Whatever. I've seen worse."
Start Your Engines
One small pedal push for Mike. One awesome push for CF awarenessMike, you've got the wind of 30,000 beautiful people at your back, dude. Best of luck, safe travels, and, above all, thank you. For the chance -- and the challenge -- of a lifetime.
Sunday, May 22, 2011
Because of You
Dear Cystic Fibrosis:
I know it's been a while since I've written you, though I honestly can't say I'm sorry. It's true that you are not my favorite penpal, but in my defense, you've been kind of busy -- that whole "wreaking havoc on innocent, beautiful lives" day job of yours seems to take up a lot of time, plus I have yet to see you take a vacation. It must be rough knowing that so much is riding on your every move, that you literally hold the health and happiness of over 30,000 people just in the US alone in your hands. I'm not sure I would want that kind of pressure, to be perfectly honest, though I like to imagine that if I did have such power I would use it for good rather than evil. But hey, to each his own, right?
Anyway, I thought it was probably about time for you and me to get back in touch. In part this is because I think it's only fair to let you know that you are, once again, being a very royal pain in my butt. Not that you ever stop, obviously, but it feels like sometimes -- every once in a very blue moon or so -- you seem to back off just enough to give me a false sense of security. You lie low for a few days and I feel better, and my friends seem healthier, and no one is dying or sick or stuck in the hospital, and for just a few brief moments I remember that there was a time when I thought you maybe didn't matter quite so much. That maybe, if I kept my eyes shut and wished hard enough for long enough and with enough faith in the power of miracles, that you would just disappear. And yes, I feel weird writing that, even to you. It seems strange to have to tell someone (or something, rather) that you hate them. But I do, CF. I really, really, really do.
I hate you for what you do to my friends, for the lives you've taken, for the joy you seem to take in hurting families, worrying loving parents, leaving behind dedicated spouses, and doling out way more pain than any young child should ever really have to endure. I get it; I understand that you are part of life and that, like anything, you have your beauty. I see how strong you make people like my friends, who are facing sickness or transplants or second transplants or new additions to their families when they themselves can't breathe. I see the light that you spark in them and it is almost enough to make me think you have something to offer -- but then I remember that each of these people are strong DESPITE you, not because of you. And then I hate you all over again, and I realize that I simply cannot wait until the day when their collective light is allowed to burn even brighter without your darkness. Because let me tell you dude, it is going to be one hell of a sparkle show when that moment finally happens.
Which brings me to my second point, CF:
You don't stand a chance.
Nope, sorry, not kidding. I absolutely mean it. And as proof I've spent the last couple of weekends at events that have raised literally hundreds of thousands of dollars to eradicate your presence. I've stood next to friends and family members who have lost a loved one and who are still so dedicated to kicking your butt. I've watched in awe as one small child took her place in the center of a huge group photograph -- her future as bright as the smiles on her team members' faces. I've had the chance to be personally inspired by Mike Freemantle, who is literally riding his bike across the country to raise money for the Greater NY Chapter of the Cystic Fibrosis Foundation. I've seen people walk in the rain, people walking with strollers, people dressed in costume, and people coming together in mutual love, hope, and celebration.
And all of this, CF, is not because of you at all. It is despite you. It is not because you make us sick, but that we are strong despite your efforts. It is not because you rip apart our community, but the way we rally despite these great losses. It is not because we have no faith, but that we are hopeful despite your nasty tricks. And it is not because you weaken our spirit. It is that we will always be the bigger, faster, and more determined team -- despite it all.
So I don't mean to add to your workload, little monster, but if I were you I would consider taking up running -- and pretty fast too. Because if the heart, soul, and dedication that I've seen these past few weeks alone is any indication, you're in way over your head with this one.
And unlike the rest of us, CF, you are running alone.
Sincerely,
Piper
I know it's been a while since I've written you, though I honestly can't say I'm sorry. It's true that you are not my favorite penpal, but in my defense, you've been kind of busy -- that whole "wreaking havoc on innocent, beautiful lives" day job of yours seems to take up a lot of time, plus I have yet to see you take a vacation. It must be rough knowing that so much is riding on your every move, that you literally hold the health and happiness of over 30,000 people just in the US alone in your hands. I'm not sure I would want that kind of pressure, to be perfectly honest, though I like to imagine that if I did have such power I would use it for good rather than evil. But hey, to each his own, right?
Anyway, I thought it was probably about time for you and me to get back in touch. In part this is because I think it's only fair to let you know that you are, once again, being a very royal pain in my butt. Not that you ever stop, obviously, but it feels like sometimes -- every once in a very blue moon or so -- you seem to back off just enough to give me a false sense of security. You lie low for a few days and I feel better, and my friends seem healthier, and no one is dying or sick or stuck in the hospital, and for just a few brief moments I remember that there was a time when I thought you maybe didn't matter quite so much. That maybe, if I kept my eyes shut and wished hard enough for long enough and with enough faith in the power of miracles, that you would just disappear. And yes, I feel weird writing that, even to you. It seems strange to have to tell someone (or something, rather) that you hate them. But I do, CF. I really, really, really do.
I hate you for what you do to my friends, for the lives you've taken, for the joy you seem to take in hurting families, worrying loving parents, leaving behind dedicated spouses, and doling out way more pain than any young child should ever really have to endure. I get it; I understand that you are part of life and that, like anything, you have your beauty. I see how strong you make people like my friends, who are facing sickness or transplants or second transplants or new additions to their families when they themselves can't breathe. I see the light that you spark in them and it is almost enough to make me think you have something to offer -- but then I remember that each of these people are strong DESPITE you, not because of you. And then I hate you all over again, and I realize that I simply cannot wait until the day when their collective light is allowed to burn even brighter without your darkness. Because let me tell you dude, it is going to be one hell of a sparkle show when that moment finally happens.
Which brings me to my second point, CF:
You don't stand a chance.
Nope, sorry, not kidding. I absolutely mean it. And as proof I've spent the last couple of weekends at events that have raised literally hundreds of thousands of dollars to eradicate your presence. I've stood next to friends and family members who have lost a loved one and who are still so dedicated to kicking your butt. I've watched in awe as one small child took her place in the center of a huge group photograph -- her future as bright as the smiles on her team members' faces. I've had the chance to be personally inspired by Mike Freemantle, who is literally riding his bike across the country to raise money for the Greater NY Chapter of the Cystic Fibrosis Foundation. I've seen people walk in the rain, people walking with strollers, people dressed in costume, and people coming together in mutual love, hope, and celebration.
And all of this, CF, is not because of you at all. It is despite you. It is not because you make us sick, but that we are strong despite your efforts. It is not because you rip apart our community, but the way we rally despite these great losses. It is not because we have no faith, but that we are hopeful despite your nasty tricks. And it is not because you weaken our spirit. It is that we will always be the bigger, faster, and more determined team -- despite it all.
So I don't mean to add to your workload, little monster, but if I were you I would consider taking up running -- and pretty fast too. Because if the heart, soul, and dedication that I've seen these past few weeks alone is any indication, you're in way over your head with this one.
And unlike the rest of us, CF, you are running alone.
Sincerely,
Piper
Friday, September 24, 2010
Just Do It: Cure Edition
So I'm always going on and on around here about my awesome family, and sometimes I wonder if you all get sick of it. I mean, be honest, here. Are you tired of coming onto my blog all geared up to here (yet another) story about the life and times of a slightly crazy transplant patient and her very high-strung puppy, only to find yourself somewhat disappointed by the fact that all I ever seem to talk about anymore is my fabulously helpful mother, my fun-loving father, or my pretty much ridiculously talented sister? Yeah, I kind of figured as much. But fear not, lovely people, because I 100% promise to you all that this particular post that you are about to read will not be in any way shape or form about my fabulous family. No, really, I mean it this time.
It's gonna be about my equally fabulous friends.
Shocker. Bet y'all didn't see that one coming from a mile away, did you?
But, although I'm not kidding when I say that all of my friends definitely deserve to have a blog dedicated to their wonderfulness, this post is about one friend in particular. Remember this guy?
(Psst...he's the one on the right.)
Yep, that's Ben, who at around this time last year ran the 2009 NYC Marathon, and in the process raised about $4,000 for Team Boomer and the fight to cure cystic fibrosis. Um, yeah, did I mention that I have pretty fabulous friends? I wasn't kidding...
So this year, of course, Ben is at it again. Believe me, beautiful readers, I have tried (and tried, and tried, and tried again) to get this guy to slow down and stand still more often. And frankly, it just flat-out doesn't work. He pretty much makes me look lazy (actually, he would probably make the Tazmanian Devil look like a couch potato if the two ever went up head-to-head, though it's possible that our own "super fibros" Ronnie and/or Jerry Cahill could outrun him, not to mention Rock CF's incredible Emily. Just sayin', Ben.) Given that simple fact, though, I've decided instead to focus my energy on something a lot more doable than forcing Ben to stop moving. Something relatively easy like, say, finding a cure and saving the lives of over 70,000 children and adults around the world. Right. Because we all know that together we can totally do that.
Which is why, on 10/10/10, Ben is going to be running the Chicago Marathon in support of the Cystic Fibrosis Foundation. And, as we all know, the CFF is an amazing charity, with over 90 cents of every single dollar raised going directly towards life-saving research and drug development. In the immortal words of Dr. Bob Beall: money equals research and research equals science and science equals LIFE.
But, of course, none of you need me to tell you that, right?
PLEASE show your support for this amazing guy and this amazing cause. There are so many ways to do it, and they're all super easy.
1) Obviously, this is a fundraiser, the primary goal of which is to, well, raise funds. If you feel like helping out Ben's marathon awesomeness, please do so here.
2) If you live near the Chicago area, please go out and support Ben and all the runners on Sunday, October 10th. I'm not allowed to travel for a while post-tx, or I would totally be there. And, of course, cheer especially loud for all the wonderful people running for the CFF.
3) Feel free to leave Ben a message in the comments of this blog to let him know who he's fighting for and how much we all appreciate it. Believe me, this sort of encouragement will probably come in handy around mile 25 or so!
Honestly, I know I joke around quite a bit on the blog, but on a serious note: I'm so beyond proud and grateful to have amazing people in my life. And to everyone who continues to -- or has in the past, or ever will in the future -- put so much time, effort, and energy into the race to cure this crazy disease, please know that all the blogs in the world could never even begin to touch on how awesome you are. To you it might mean 26 miles (and 385 yards) of sweat and effort, but to 70,000 people around the world, it means everything.
It's gonna be about my equally fabulous friends.
Shocker. Bet y'all didn't see that one coming from a mile away, did you?
But, although I'm not kidding when I say that all of my friends definitely deserve to have a blog dedicated to their wonderfulness, this post is about one friend in particular. Remember this guy?
(Psst...he's the one on the right.)
Yep, that's Ben, who at around this time last year ran the 2009 NYC Marathon, and in the process raised about $4,000 for Team Boomer and the fight to cure cystic fibrosis. Um, yeah, did I mention that I have pretty fabulous friends? I wasn't kidding...
So this year, of course, Ben is at it again. Believe me, beautiful readers, I have tried (and tried, and tried, and tried again) to get this guy to slow down and stand still more often. And frankly, it just flat-out doesn't work. He pretty much makes me look lazy (actually, he would probably make the Tazmanian Devil look like a couch potato if the two ever went up head-to-head, though it's possible that our own "super fibros" Ronnie and/or Jerry Cahill could outrun him, not to mention Rock CF's incredible Emily. Just sayin', Ben.) Given that simple fact, though, I've decided instead to focus my energy on something a lot more doable than forcing Ben to stop moving. Something relatively easy like, say, finding a cure and saving the lives of over 70,000 children and adults around the world. Right. Because we all know that together we can totally do that.
Which is why, on 10/10/10, Ben is going to be running the Chicago Marathon in support of the Cystic Fibrosis Foundation. And, as we all know, the CFF is an amazing charity, with over 90 cents of every single dollar raised going directly towards life-saving research and drug development. In the immortal words of Dr. Bob Beall: money equals research and research equals science and science equals LIFE.
But, of course, none of you need me to tell you that, right?
PLEASE show your support for this amazing guy and this amazing cause. There are so many ways to do it, and they're all super easy.
1) Obviously, this is a fundraiser, the primary goal of which is to, well, raise funds. If you feel like helping out Ben's marathon awesomeness, please do so here.
2) If you live near the Chicago area, please go out and support Ben and all the runners on Sunday, October 10th. I'm not allowed to travel for a while post-tx, or I would totally be there. And, of course, cheer especially loud for all the wonderful people running for the CFF.
3) Feel free to leave Ben a message in the comments of this blog to let him know who he's fighting for and how much we all appreciate it. Believe me, this sort of encouragement will probably come in handy around mile 25 or so!
Honestly, I know I joke around quite a bit on the blog, but on a serious note: I'm so beyond proud and grateful to have amazing people in my life. And to everyone who continues to -- or has in the past, or ever will in the future -- put so much time, effort, and energy into the race to cure this crazy disease, please know that all the blogs in the world could never even begin to touch on how awesome you are. To you it might mean 26 miles (and 385 yards) of sweat and effort, but to 70,000 people around the world, it means everything.
Sunday, May 23, 2010
12,500
Today was our Great Strides walk in lower Manhattan. I was SUPER proud of my team -- we raised about $12,500 (preliminary total) for a cure! That's money that will go straight to the Cystic Fibrosis Foundation, and about 90 cents of every dollar donated directly funds CF research and educational programs. And when you think about the new drugs in the pipeline and how freakin' close we are to FINALLY breaking through to target the actual defect that causes this disease, well, all I can say is wow -- Great Strides, indeed.
Thank you to all my wonderful walkers for showing up, for smiling even at 9:30 am on a Sunday morning, and for looking so amazingly HOT in my team t-shirts! I was especially proud of our two furry mascots, particularly "Tug" for rockin' the shirt like a champ. Also thanks to my CF friends Graves, Joni, and Gabby -- awesome to see you all!
And a VERY special thank you to everyone who donated to our team through this blog. You guys have no idea how amazing the response was after my post for a cure! I was truly overwhelmed with gratitude and excitement. Not that I ever for a second doubted that I had the best readers a girl could ask for, of course, but you didn't have to go to such amazing lengths to prove it! Please know that you not only made my day, you also made a HUGE difference in the lives of everyone living and breathing with CF throughout the world.
Here are a couple of pictures from the big day:
Team Piper Official Portrait
T-Shirt Front
T-Shirt Back
My Lovely Sister (and designer of the shirts!), My Father, and Me at the Walk
Okay, here's the fun part:
Are you an official "Breathhead"? Are you interested in having one of these fabulous lung t-shirts -- designed by a famous designer featured in the June issue of Vogue, no less -- for your very own? Would you like to spend the night of my transplant cruising my blog, reading updates from my talented sister, and sporting your own piece of beautiful Matter of Life and Breath apparel?
If you answered yes to any of the above questions, consider contacting a therapist for special help. Just kidding, contact me instead! That's right, we're thinking of ordering another batch of these beautiful shirts for all my wonderful supporters, and would like nothing more than to send YOU your very own. So let me know at matteroflifeandbreath(at)gmail(dot)com and please include info as to your preferred size and shipping address. All addresses will be deleted upon shipping.
Thanks guys, and thank you to everyone who donated, walked, or volunteered for the many Great Strides walks all over the country. You guys are, as ever, an inspiration.
Thank you to all my wonderful walkers for showing up, for smiling even at 9:30 am on a Sunday morning, and for looking so amazingly HOT in my team t-shirts! I was especially proud of our two furry mascots, particularly "Tug" for rockin' the shirt like a champ. Also thanks to my CF friends Graves, Joni, and Gabby -- awesome to see you all!
And a VERY special thank you to everyone who donated to our team through this blog. You guys have no idea how amazing the response was after my post for a cure! I was truly overwhelmed with gratitude and excitement. Not that I ever for a second doubted that I had the best readers a girl could ask for, of course, but you didn't have to go to such amazing lengths to prove it! Please know that you not only made my day, you also made a HUGE difference in the lives of everyone living and breathing with CF throughout the world.
Here are a couple of pictures from the big day:
Team Piper Official Portrait
T-Shirt Front
T-Shirt Back
My Lovely Sister (and designer of the shirts!), My Father, and Me at the WalkOkay, here's the fun part:
Are you an official "Breathhead"? Are you interested in having one of these fabulous lung t-shirts -- designed by a famous designer featured in the June issue of Vogue, no less -- for your very own? Would you like to spend the night of my transplant cruising my blog, reading updates from my talented sister, and sporting your own piece of beautiful Matter of Life and Breath apparel?
Thanks guys, and thank you to everyone who donated, walked, or volunteered for the many Great Strides walks all over the country. You guys are, as ever, an inspiration.
Monday, May 17, 2010
An Open Letter in Support of a Cure
Dear Would-Be Donors, Volunteers, New Friends, and Supporters:
I am writing you today to let you know about an issue that is very close to my heart. In fact, it's directly over, next to, and surrounding my heart: in my lungs. And it's also in the lungs of many of my friends, in the lungs of young children, in the lungs of approx. 30,000 people in the United States alone. That's right, today I am writing you to let you know about cystic fibrosis (CF), a deadly disease that I and many other amazing, wonderful, and inspiring people live with everyday. It's a disease that directly affects the daily lives of so many, and I write on behalf of every single one of those remarkable individuals to ask for your help.
We need a cure.
When you have a genetic disease, science means everything. The Cystic Fibrosis Foundation (CFF) partners with drug companies and other groups to fund research that has led to major developments in the treatment of CF. In fact, since I was born in 1981 the median life expectancy for a person with CF has risen from only to 18 to slightly over 37 years. Much of this is due to the new drugs that have reached the market during that time period, none of which would have been developed without the generous support of donors. To say this is amazing progress for a genetic disease is a huge understatement -- especially when you consider that alongside the increase in life expectancy has also come a dramatic shift in the quality of life for most people with CF. There are now adult CFers holding down jobs, raising families, and giving back in the same way that so many have given to us through the years. And we are, all of us, so grateful for that opportunity.
But let me tell you why it's not enough. The simple fact is that while there have been amazing improvements in CF care since the early 80s, the focus of that care is still on treating the symptoms of the disease, rather than the underlying defect. We have drugs that help thin and hydrate the sticky, dry mucus that collects and pools in our lungs; drugs that help us compensate for our ineffective pancreases by feeding our bodies synthetic enzymes to digest food; we have drugs that reduce inflammation in the airways and allow us to take deeper, fuller breaths; and we have drugs that attack the many different strains of bacteria that inevitably find their way into our diseased lungs, causing recurrent infections that in turn lead to irreversible scarring; and, for a lucky few, we have the final option of transplant -- trading in our CF lungs for the lungs of a generous stranger in the hopes of increasing the time we have to savor this life.
Unfortunately, few of these amazing, life-enhancing drugs come without consequence. Overuse of steroids to treat inflammation can lead to osteoporosis, diabetes, and adrenal disease. Pancreatic enzymes can cause scarring to the digestive track and lead to further issues down the road. Antibiotics used to treat infections often become ineffective over the years, forcing the doctors to resort to increasingly strong drugs that can themselves cause kidney failure, hearing loss, joint pain, nausea, or allergic reactions. Eventually, the infections often progress to the point where antibiotic treatment is no longer enough, and transplant becomes the only option. While this is a remarkable second chance for many CFers, it comes with a lifetime guarantee of immuno-suppression as well as many common secondary conditions such as high blood pressure, diabetes, osteoporosis, and an increased risk of certain cancers.
But you may have heard something about CF in the news lately -- say in a recent article published in The New Yorker. And if you did, you might have learned that the CFF is now helping to fund clinical trials for several drugs aimed at treating the actual genetic defect that causes cystic fibrosis. These drugs have the potential to change the entire approach to CF treatment, allowing perhaps for less use of the symptom-treating drugs that often lead to other, secondary ailments, and focusing instead on eliminating those issues at their source. These drugs have shown amazing promise in clinical trials so far and are currently in the late stages of testing before the final push to market.
And that, my friends, is where you come in.
It costs close to $800 million to bring a single drug to market, from research and development through testing and FDA approval. Because of this, it is ONLY through the support of people like yourselves that any of these drugs ever reaches the CF patient population. We are so close to potentially saving thousands of lives with these new therapies, but we simply cannot do it without your help. And, despite the seemingly astronomical sum required to make a difference, let me assure you that it's the little donations that add up to the bulk of this life-changing number. That change you found in your pocket when you were getting ready to do the laundry, the amount you would spend on your daily Starbucks latte, the cost of a night at the movies (or even the popcorn!) can be a miracle for all the many people whose every breath still depends on a cure.
May is National Cystic Fibrosis month and, across the country, people will be walking to support the CFF. Please add your name to the ever-growing list of amazing people behind this cause, whether it be through a gift of your time, your money, or even just a pledge to pass on the message of this disease to ten new people.
You can donate to my own walk by clicking this link and following the simple instructions.
30,000 people (and their 60,000 lungs) will thank you for it!
xoxox beautiful people,
Piper
I am writing you today to let you know about an issue that is very close to my heart. In fact, it's directly over, next to, and surrounding my heart: in my lungs. And it's also in the lungs of many of my friends, in the lungs of young children, in the lungs of approx. 30,000 people in the United States alone. That's right, today I am writing you to let you know about cystic fibrosis (CF), a deadly disease that I and many other amazing, wonderful, and inspiring people live with everyday. It's a disease that directly affects the daily lives of so many, and I write on behalf of every single one of those remarkable individuals to ask for your help.
We need a cure.
When you have a genetic disease, science means everything. The Cystic Fibrosis Foundation (CFF) partners with drug companies and other groups to fund research that has led to major developments in the treatment of CF. In fact, since I was born in 1981 the median life expectancy for a person with CF has risen from only to 18 to slightly over 37 years. Much of this is due to the new drugs that have reached the market during that time period, none of which would have been developed without the generous support of donors. To say this is amazing progress for a genetic disease is a huge understatement -- especially when you consider that alongside the increase in life expectancy has also come a dramatic shift in the quality of life for most people with CF. There are now adult CFers holding down jobs, raising families, and giving back in the same way that so many have given to us through the years. And we are, all of us, so grateful for that opportunity.
But let me tell you why it's not enough. The simple fact is that while there have been amazing improvements in CF care since the early 80s, the focus of that care is still on treating the symptoms of the disease, rather than the underlying defect. We have drugs that help thin and hydrate the sticky, dry mucus that collects and pools in our lungs; drugs that help us compensate for our ineffective pancreases by feeding our bodies synthetic enzymes to digest food; we have drugs that reduce inflammation in the airways and allow us to take deeper, fuller breaths; and we have drugs that attack the many different strains of bacteria that inevitably find their way into our diseased lungs, causing recurrent infections that in turn lead to irreversible scarring; and, for a lucky few, we have the final option of transplant -- trading in our CF lungs for the lungs of a generous stranger in the hopes of increasing the time we have to savor this life.
Unfortunately, few of these amazing, life-enhancing drugs come without consequence. Overuse of steroids to treat inflammation can lead to osteoporosis, diabetes, and adrenal disease. Pancreatic enzymes can cause scarring to the digestive track and lead to further issues down the road. Antibiotics used to treat infections often become ineffective over the years, forcing the doctors to resort to increasingly strong drugs that can themselves cause kidney failure, hearing loss, joint pain, nausea, or allergic reactions. Eventually, the infections often progress to the point where antibiotic treatment is no longer enough, and transplant becomes the only option. While this is a remarkable second chance for many CFers, it comes with a lifetime guarantee of immuno-suppression as well as many common secondary conditions such as high blood pressure, diabetes, osteoporosis, and an increased risk of certain cancers.
But you may have heard something about CF in the news lately -- say in a recent article published in The New Yorker. And if you did, you might have learned that the CFF is now helping to fund clinical trials for several drugs aimed at treating the actual genetic defect that causes cystic fibrosis. These drugs have the potential to change the entire approach to CF treatment, allowing perhaps for less use of the symptom-treating drugs that often lead to other, secondary ailments, and focusing instead on eliminating those issues at their source. These drugs have shown amazing promise in clinical trials so far and are currently in the late stages of testing before the final push to market.
And that, my friends, is where you come in.
It costs close to $800 million to bring a single drug to market, from research and development through testing and FDA approval. Because of this, it is ONLY through the support of people like yourselves that any of these drugs ever reaches the CF patient population. We are so close to potentially saving thousands of lives with these new therapies, but we simply cannot do it without your help. And, despite the seemingly astronomical sum required to make a difference, let me assure you that it's the little donations that add up to the bulk of this life-changing number. That change you found in your pocket when you were getting ready to do the laundry, the amount you would spend on your daily Starbucks latte, the cost of a night at the movies (or even the popcorn!) can be a miracle for all the many people whose every breath still depends on a cure.
May is National Cystic Fibrosis month and, across the country, people will be walking to support the CFF. Please add your name to the ever-growing list of amazing people behind this cause, whether it be through a gift of your time, your money, or even just a pledge to pass on the message of this disease to ten new people.
You can donate to my own walk by clicking this link and following the simple instructions.
30,000 people (and their 60,000 lungs) will thank you for it!
xoxox beautiful people,
Piper
Sunday, March 7, 2010
Magic in the Making
Okay, I know I win worst blogger award...again. The fact of the matter is that there hasn't been a whole lot going on in my life lately to share, and believe me I'm not complaining. I was a little sick last week -- started back on IVs after my last post and then ended up having to add a high-dose steroid burst to help push things along -- but I feel amazing now. It's incredible what a few days, a few antibiotics, and a few (or, you know, six) prednisone every day will do for a girl! (And, on a random sidenote, is there any better feeling than being on high dose pred, having plenty of food in the house, and knowing that you're actually allowed -- um, make that encouraged -- to eat as much of it as you want? I've had some super yummy dinners these past few days, suffice it to say.)
But to be honest the truly incredible part of this weekend wasn't the steroids, or the IVs, or the ecstatic high that comes from feeling better after an infection, or even the non-stop foodfest. Nope, the really, truly, unbelievably amazing thing wasn't even going in New York, even though things were pretty great around here. As it turns out, though, everyone who's REALLY cool was hanging out not in the city, but on the mountain. Vail Mountain in Colorado, to be specific.
This past weekend was the 25th annual American Airlines Celebrity Ski for Cystic Fibrosis, which this year raised over $700,000 toward curing this disease in a single three-day event. Incredible? Absolutely. Heartwarming? Without a doubt. Magical? Well...decide for yourself:
Is it magic that a single event has been able to raise over $23 million to date for CF research, owing almost entirely to donations from individuals who return year after year -- who literally come for the fun and stay for the cause?
Is it magic that celebrities as diverse as sports heroes (Jim Lonborg, Matt Bahr, Jim Palmer, Billy Kidd), TV stars (Ian Ziering, Jim Sikking, Sandra Hess, MacKenzie Rosman, Kimberlin Brown, Wendie Malick, Grant Goodeve, Dennis Haskins), comedians (Jeff Dunham, Rosie O'Donnell), musicians (including members of Santana, Gavin DeGraw, and American Idol contestants), and so many, many more give their time and energy to support CF and raise awareness of this disease?
Is it magic that so many corporate sponsors, particularly American Airlines, have stuck with this cause since the 1980s, through good times and bad, through the discovery of the CF gene and up to now, when new drugs promise so much hope?
Most importantly, is it magic that one room full of about 1,000 people was able to raise well over half a million dollars for cystic fibrosis in the middle of a recession?
Speaking as someone who has been honored to be a part of this event almost since its conception, I'm here to tell you that it is, quite simply, magic. Every single year the people who come to this weekend blow me away with their generosity, their spirit, and their commitment to finding a cure. For over 20 years I have been with them on the ski slopes, raced along side of them on the slalom course as we also raced toward a cure, and shared in the joy, laughter, tears, and love that make this event so...well...magical.
I couldn't be there this year because I'm waiting for a little magic of my own, but I couldn't let the weekend pass without mentioning my wonderful second family and saying, once again, "thank you" for all that they do...for all of us. This is a group who took 30 seconds of silence last night to focus positive energy, prayers, and thoughts for me 2,000 miles away as I waited for new lungs -- coincidentally on the weekend when everything fell into place and I finally began to feel better.
And if that isn't magic, then I don't know what is.
But to be honest the truly incredible part of this weekend wasn't the steroids, or the IVs, or the ecstatic high that comes from feeling better after an infection, or even the non-stop foodfest. Nope, the really, truly, unbelievably amazing thing wasn't even going in New York, even though things were pretty great around here. As it turns out, though, everyone who's REALLY cool was hanging out not in the city, but on the mountain. Vail Mountain in Colorado, to be specific.
This past weekend was the 25th annual American Airlines Celebrity Ski for Cystic Fibrosis, which this year raised over $700,000 toward curing this disease in a single three-day event. Incredible? Absolutely. Heartwarming? Without a doubt. Magical? Well...decide for yourself:
Is it magic that a single event has been able to raise over $23 million to date for CF research, owing almost entirely to donations from individuals who return year after year -- who literally come for the fun and stay for the cause?
Is it magic that celebrities as diverse as sports heroes (Jim Lonborg, Matt Bahr, Jim Palmer, Billy Kidd), TV stars (Ian Ziering, Jim Sikking, Sandra Hess, MacKenzie Rosman, Kimberlin Brown, Wendie Malick, Grant Goodeve, Dennis Haskins), comedians (Jeff Dunham, Rosie O'Donnell), musicians (including members of Santana, Gavin DeGraw, and American Idol contestants), and so many, many more give their time and energy to support CF and raise awareness of this disease?
Is it magic that so many corporate sponsors, particularly American Airlines, have stuck with this cause since the 1980s, through good times and bad, through the discovery of the CF gene and up to now, when new drugs promise so much hope?
Most importantly, is it magic that one room full of about 1,000 people was able to raise well over half a million dollars for cystic fibrosis in the middle of a recession?
Speaking as someone who has been honored to be a part of this event almost since its conception, I'm here to tell you that it is, quite simply, magic. Every single year the people who come to this weekend blow me away with their generosity, their spirit, and their commitment to finding a cure. For over 20 years I have been with them on the ski slopes, raced along side of them on the slalom course as we also raced toward a cure, and shared in the joy, laughter, tears, and love that make this event so...well...magical.
I couldn't be there this year because I'm waiting for a little magic of my own, but I couldn't let the weekend pass without mentioning my wonderful second family and saying, once again, "thank you" for all that they do...for all of us. This is a group who took 30 seconds of silence last night to focus positive energy, prayers, and thoughts for me 2,000 miles away as I waited for new lungs -- coincidentally on the weekend when everything fell into place and I finally began to feel better.
And if that isn't magic, then I don't know what is.
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?
Sunday, February 7, 2010
Leave Me Breathless
Okay, guys, it's time for yet another true confession over here on a Matter of Life and Breath, but I'm warning you: this one is not for the faint of heart (or faint of lung, for that matter). That's right, it's time for you all to learn about my secret fear, the stuff of nightmares, truly the type of thing that keeps me up at night, or out of certain of my friends apartments.
Time to take a really, really deep breath, CFers . . .
Okay, have I freaked you out yet?
Yes, I'm ashamed to admit that I truly, deeply fear stairs in all shapes and sizes. For all my honestly held "exercise is good" beliefs, I just can't deal with these monsters. But, for the sake of my health and my ego, I'll sometimes try to push myself up a flight, or maybe two, or, you know, some other reasonable number.
Like, say, 50.
You know, just as an example.
No, I didn't climb 50 flights of stairs this weekend because, frankly, I'm not that amazing. Apparently those genes (the super-awesome ones) in my family all went to my gorgeous cousin, her fabulous husband, and their four amazing kids, all of whom put on their climbing gear this Saturday and hiked their way to the top of a hotel in order to help find a cure for cystic fibrosis.
I don't know about you, but it leaves me breathless. Literally.
With the MN Vikings Cheerleaders, of course
No, you're not misreading. It really does say "Floor 26 -- Halfway to the top"
Um, I'd need ice cream and snacks too
With a sign for Nina, another CFer from out in Gloria's home state of WA
(and a new friend of mine on CysticLife)
Gloria, Steve, Isaac, Lola, Sam, and Caleb (who, as a toddler, is a little bit young to climb, but no doubts here about his future potential!), you guys are all, in a word, unbelievable. I feel blessed beyond words to have you as my cousins, and I know I speak for the entire CF community when I say a very heartfelt thank you. Believe me, you have 30,000 + hearts (and lungs!) beating in gratitude for you guys right now. And to everyone else who has ever donated or raised a penny for this cause, a huge shout out and thank you to you also.
I may have nightmares about stairs, but I have some pretty amazing dreams as well. And you guys are making them possible.
Time to take a really, really deep breath, CFers . . .
Okay, have I freaked you out yet?
Yes, I'm ashamed to admit that I truly, deeply fear stairs in all shapes and sizes. For all my honestly held "exercise is good" beliefs, I just can't deal with these monsters. But, for the sake of my health and my ego, I'll sometimes try to push myself up a flight, or maybe two, or, you know, some other reasonable number.
Like, say, 50.
You know, just as an example.
No, I didn't climb 50 flights of stairs this weekend because, frankly, I'm not that amazing. Apparently those genes (the super-awesome ones) in my family all went to my gorgeous cousin, her fabulous husband, and their four amazing kids, all of whom put on their climbing gear this Saturday and hiked their way to the top of a hotel in order to help find a cure for cystic fibrosis.
I don't know about you, but it leaves me breathless. Literally.
With the MN Vikings Cheerleaders, of course
No, you're not misreading. It really does say "Floor 26 -- Halfway to the top"
Um, I'd need ice cream and snacks too
With a sign for Nina, another CFer from out in Gloria's home state of WA(and a new friend of mine on CysticLife)
Gloria, Steve, Isaac, Lola, Sam, and Caleb (who, as a toddler, is a little bit young to climb, but no doubts here about his future potential!), you guys are all, in a word, unbelievable. I feel blessed beyond words to have you as my cousins, and I know I speak for the entire CF community when I say a very heartfelt thank you. Believe me, you have 30,000 + hearts (and lungs!) beating in gratitude for you guys right now. And to everyone else who has ever donated or raised a penny for this cause, a huge shout out and thank you to you also.
I may have nightmares about stairs, but I have some pretty amazing dreams as well. And you guys are making them possible.
Friday, November 20, 2009
We're Number 1!
Yesterday was a loooong day of filming for the CFF! We started out at my house with personal interviews about life with CF and waiting for transplant, then moved on to the hospital where I had appointments with both my vascular surgeon and my CF doctor. The filming finally wrapped up with some "B roll" footage of my sister's art gallery opening (so cool!) and some shots this morning of the family and treatment time, etc. Add to that the fact that a homecare nurse came at 11 pm last night to start a new peripheral, and you've got a recipe for a very long, exhausting, wonderful, fun, and somewhat surreal day.
By the way, for those of you unfamiliar with the American Airlines Celebrity Ski event benefiting the CFF, check out the website here (just make sure you click on the Ski event for CF, rather than the equally worthy golf event for breast cancer!). The event is a major national fundraiser for the foundation, and has played host to tons of great celebrities who give their time, effort, money, and talent to help find a cure (To name just a few: Rosie O'Donnell, Jeff Dunham, members of the cast of the original 90210, Denis Haskins -- aka, Mr. Belding from Saved by the Bell, and MacKenzie Rosman of 7th Heaven, whose own sister recently got her wings after two years of breathing CF free thanks to a transplant). Each year around 1,000 participants gather together to ski, have fun, listen to amazing music, enjoy comedy shows, and most of all, CURE CF! I have been truly blessed and honored to be a part of this event almost from its conception, and though I can't travel out to Colorado this year because of the transplant, I know that they'll be kicking some CF butt in my absence. Just a HUGE thank you to everyone associated with the event, and also to the awesome crew from MultiImage media that came to shoot the film.
Okay so on to more immediately relevant stuff. As you might have guessed from the above mentioned IV nurse, I'm not off the drugs. My visit with my CF doc went well, but my PFTs are down just a bit and I'm still coughing even after 18 days on the big guns, so we're gonna keep them coming. My biggest worry was getting caught over Thanksgiving week with no IV and no doctors around, so I think it's better this way. And yes, it sucks not to be IV free for the holidays, but it would suck a whole lot more to feel like crap and be coughing up crud. So this is probably a good thing -- call it a nice gift wrapped in kinda depressing paper. I know once I open it and reap the benefits of full health I'll be glad I did, but right now it's still in the corner with that ugly sweater from Aunt Dotty. Oh well, I'll just let it sit for a few minutes.
But if I'm still on the IVs, then at least I'm off the blood thinners! That's right, the clots are gone, the jig is up, and the "Not-Quite-So-Great PICC Clot Fiasco of 2009" is officially, and totally, OVER. How's that for a little holiday cheer?
And . . . drumroll please . . . I am now, officially, without a doubt, number 1 on the transplant list for my height and blood type. Wow. Give me a second to process that and I promise I'll get back to you about how I feel. Right now all I can say is that it is amazing, thrilling, and unbelievably humbling to know that I am next in line for this gift of life. Scary as all get out, sure, but also SUCH great news.
Okay, so we're number 1! And we're here, in NYC, enjoying the gorgeously mild and warm weather for mid-November, and the family that's come in for the holiday, and the fact that I'm going on nearly 28 years with these lungs of mine, and the fact that we have the weekend free to play with friends, enjoy some nice dinners, and generally have fun.
Because, after all, we're number 1! And we couldn't be more grateful.
By the way, for those of you unfamiliar with the American Airlines Celebrity Ski event benefiting the CFF, check out the website here (just make sure you click on the Ski event for CF, rather than the equally worthy golf event for breast cancer!). The event is a major national fundraiser for the foundation, and has played host to tons of great celebrities who give their time, effort, money, and talent to help find a cure (To name just a few: Rosie O'Donnell, Jeff Dunham, members of the cast of the original 90210, Denis Haskins -- aka, Mr. Belding from Saved by the Bell, and MacKenzie Rosman of 7th Heaven, whose own sister recently got her wings after two years of breathing CF free thanks to a transplant). Each year around 1,000 participants gather together to ski, have fun, listen to amazing music, enjoy comedy shows, and most of all, CURE CF! I have been truly blessed and honored to be a part of this event almost from its conception, and though I can't travel out to Colorado this year because of the transplant, I know that they'll be kicking some CF butt in my absence. Just a HUGE thank you to everyone associated with the event, and also to the awesome crew from MultiImage media that came to shoot the film.
Okay so on to more immediately relevant stuff. As you might have guessed from the above mentioned IV nurse, I'm not off the drugs. My visit with my CF doc went well, but my PFTs are down just a bit and I'm still coughing even after 18 days on the big guns, so we're gonna keep them coming. My biggest worry was getting caught over Thanksgiving week with no IV and no doctors around, so I think it's better this way. And yes, it sucks not to be IV free for the holidays, but it would suck a whole lot more to feel like crap and be coughing up crud. So this is probably a good thing -- call it a nice gift wrapped in kinda depressing paper. I know once I open it and reap the benefits of full health I'll be glad I did, but right now it's still in the corner with that ugly sweater from Aunt Dotty. Oh well, I'll just let it sit for a few minutes.
But if I'm still on the IVs, then at least I'm off the blood thinners! That's right, the clots are gone, the jig is up, and the "Not-Quite-So-Great PICC Clot Fiasco of 2009" is officially, and totally, OVER. How's that for a little holiday cheer?
And . . . drumroll please . . . I am now, officially, without a doubt, number 1 on the transplant list for my height and blood type. Wow. Give me a second to process that and I promise I'll get back to you about how I feel. Right now all I can say is that it is amazing, thrilling, and unbelievably humbling to know that I am next in line for this gift of life. Scary as all get out, sure, but also SUCH great news.
Okay, so we're number 1! And we're here, in NYC, enjoying the gorgeously mild and warm weather for mid-November, and the family that's come in for the holiday, and the fact that I'm going on nearly 28 years with these lungs of mine, and the fact that we have the weekend free to play with friends, enjoy some nice dinners, and generally have fun.
Because, after all, we're number 1! And we couldn't be more grateful.
Sunday, November 1, 2009
Fighting CF Never Looked So Cool
This is Ben:
This is Ben 25+ miles in to the 2009
New York Marathon:
Wow.
So as you might have guessed by now, this amazing, fantastic, and pretty much all-around-rockstar guy named Ben ran the New York Marathon this morning. 26.2 miles through all 5 boroughs of New York City. Or, to put it another way: hardcore.
What you might not know is that Ben ran this marathon to support the Boomer Esiason Foundation, and that in doing so he single-handedly raised about $4,000 to help fight cystic fibrosis. Seriously, did I mention this dude is a total rockstar?
I get asked all the time about the transplant process and what it's like to be waiting on something like this. My answer? Honestly, it's an amazing feeling to be as surrounded by as many unbelievably awesome people as I am. To have people in my life who are willing to take their first time running a marathon (HUGE accomplishment, by the way) and use that event to help fundraise and spread the word about CF is, in a word, indescribable. And I know this might sound cheesy, but who can imagine not fighting to stay healthy (through the infections and the port removals and the blood clots and the H1N1 pandemic) when there's someone out there who is strong enough to run 26.2 miles, and kind enough to do it all in honor of finding a cure?
It all sort of leaves you breathless -- in the best possible way.
PS: Ben totally doesn't read this blog (he gets enough of my snarkiness in person), but I told him he'd be featured on it tonight and he just might be checking. So if you want to say thanks to someone who not only ran for CF, but did the whole race in under 5 hours (ahem, rockstar, ahem), feel free to do it here!
What you might not know is that Ben ran this marathon to support the Boomer Esiason Foundation, and that in doing so he single-handedly raised about $4,000 to help fight cystic fibrosis. Seriously, did I mention this dude is a total rockstar?
I get asked all the time about the transplant process and what it's like to be waiting on something like this. My answer? Honestly, it's an amazing feeling to be as surrounded by as many unbelievably awesome people as I am. To have people in my life who are willing to take their first time running a marathon (HUGE accomplishment, by the way) and use that event to help fundraise and spread the word about CF is, in a word, indescribable. And I know this might sound cheesy, but who can imagine not fighting to stay healthy (through the infections and the port removals and the blood clots and the H1N1 pandemic) when there's someone out there who is strong enough to run 26.2 miles, and kind enough to do it all in honor of finding a cure?
Someone kinda like, well, this guy:
It all sort of leaves you breathless -- in the best possible way.
PS: Ben totally doesn't read this blog (he gets enough of my snarkiness in person), but I told him he'd be featured on it tonight and he just might be checking. So if you want to say thanks to someone who not only ran for CF, but did the whole race in under 5 hours (ahem, rockstar, ahem), feel free to do it here!
Saturday, May 9, 2009
Great Strides #1
How many cystics does it take to walk two complete circles around the Philadelphia zoo (and actually LAP a few of their non-CF teammates in the process)?
Give up?
Well, apparently the answer to that all-important question is two, just so long as those two are as unbelievably awesome as Amy and me! (Okay, so maybe we're believably awesome, but still awesome nonetheless.)
In case you haven't already guessed, I took the train into PA this morning -- REALLY f-ing early in the morning, I should add -- to join Amy's "Blue Crew" Great Strides team in walking laps around the animals at what is I guess the nation's first zoo. It was actually my first time in Philadelphia at all, aside from passing through on the train between DC and NY, which I'm fairly certain doesn't qualify as a real visit even by fast-paced NYC standards. Basically I came away from it all with the following observations about the city of brotherly love:
1) It's really, really, REALLY hot
2) If the various team t-shirts for the walk are any indication, the people of Philadelphia have a mild obsession with the color blue.
3) It has hills. Even in the zoo.
4) It is largely if not entirely populated by Amy's friends and co-workers, who came out in pretty much record numbers to support her and to fight CF (but then, we all understand why Amy attracts that sort of admiration, right?).
5) Oh yeah, and it's home to some rather ridiculous but very adorable monkeys.
Very fun day. Amy was sweet enough to chauffeur me around for the day in her stylishly decorated jeep, which I can guarantee is a LOT cooler than the cabs I'm going to use to cart her around NY next week. Six years in NY and I have yet to see a cab with any bumper stickers at all, much less one as great as those in Amy's collection. We also got to compare pulse-ox readings after completing the aforementioned hill climbs. Believe it or not she kicked my butt -- mine was just consistently crappy in the mid to upper 80s, but Amy is apparently a woman of far more exciting extremes, so her's was both higher and lower than mine at various points. Show off.
I'm super excited to host her in return next week and do the Manhattan walk. Last time I checked Battery Park City didn't have any flamingos, zebras, or large organgutanges, but we do have some really pretty views of the harbor. And either way we're raising money to help fight CF, which always makes for a wonderful day.
Give up?
Well, apparently the answer to that all-important question is two, just so long as those two are as unbelievably awesome as Amy and me! (Okay, so maybe we're believably awesome, but still awesome nonetheless.)
In case you haven't already guessed, I took the train into PA this morning -- REALLY f-ing early in the morning, I should add -- to join Amy's "Blue Crew" Great Strides team in walking laps around the animals at what is I guess the nation's first zoo. It was actually my first time in Philadelphia at all, aside from passing through on the train between DC and NY, which I'm fairly certain doesn't qualify as a real visit even by fast-paced NYC standards. Basically I came away from it all with the following observations about the city of brotherly love:
1) It's really, really, REALLY hot
2) If the various team t-shirts for the walk are any indication, the people of Philadelphia have a mild obsession with the color blue.
3) It has hills. Even in the zoo.
4) It is largely if not entirely populated by Amy's friends and co-workers, who came out in pretty much record numbers to support her and to fight CF (but then, we all understand why Amy attracts that sort of admiration, right?).
5) Oh yeah, and it's home to some rather ridiculous but very adorable monkeys.
Very fun day. Amy was sweet enough to chauffeur me around for the day in her stylishly decorated jeep, which I can guarantee is a LOT cooler than the cabs I'm going to use to cart her around NY next week. Six years in NY and I have yet to see a cab with any bumper stickers at all, much less one as great as those in Amy's collection. We also got to compare pulse-ox readings after completing the aforementioned hill climbs. Believe it or not she kicked my butt -- mine was just consistently crappy in the mid to upper 80s, but Amy is apparently a woman of far more exciting extremes, so her's was both higher and lower than mine at various points. Show off.
I'm super excited to host her in return next week and do the Manhattan walk. Last time I checked Battery Park City didn't have any flamingos, zebras, or large organgutanges, but we do have some really pretty views of the harbor. And either way we're raising money to help fight CF, which always makes for a wonderful day.
Tuesday, May 5, 2009
Meet Betty
Part of the point of a personal blog is to get to know the author, right? And let me tell you, there's a lot you guys probably don't know about me, starting with the charming little fact that my father owns a sailboat that is actually named "The Betty Pepper."
Surprisingly, despite its rather ridiculous name, The Betty Pepper actually floats. Don't get me wrong, I wouldn't strike out for Japan in the thing, but it does just fine lazing its way around Lake Pend Oreille in Sandpoint, ID (which is, incidently, the birthplace of Sarah Palin as well as the loaction of my parent's lakehouse). The Betty Pepper and I have spent a lot of time doing truly ridiculous things, like fishing for trout using bubble gum as bait. Don't ask.
Anyway, the point of this story isn't actually boats, because to be honest, the only really interesting fact about this rusty little sailboat is the fact that it's actually named after me. Well, kinda. See, when I was born the nurse couldn't believe anyone would be so crazy as to name their child Piper, so she inverted my first and last name (and butchered both, I might add) to come up with the only slightly less weird name: Betty Pepper. And apparently not too much has changed in the last 27 years, because the other day I received a phone call from my transplant team informing Ms. Betty Piper that she has a cardiac cath scheduled for next week. If I see her, I'll be sure to pass on the message.
How people get "Betty" out of "Beatty" I'll never really understand. What word in the English language has a silent A? Seriously, I can't think of one. And even if one does exist (I'm fairly certain it doesn't), who spells Betty with an extra A thrown in for kicks? Would any parents ever really subject their child to a lifetime of mispronounced names just to satisfy their desire to stand out from the crowd in the spelling department? Is Betty by itself so totally boring that we have to start adding random letters just to jazz it up a little?
Even more perplexing is the fact that throughout my life this mistake has been made about 50 times, and probably 49.5 of those times the culprit was an employee of a hospital. The hospitals have changed, the nurses have changed, but the overwhelming urge to call me Betty is apparently universal. Maybe Piper is such an odd name that "Beatty" actually seems LESS ridiculous. Maybe all the nurses in the world got together and decided to play history's largest and longest-running practical joke for 27 years. Maybe I just really look like a Betty. Who knows?
The thing is, the medical context is probably the one place I really don't want my name to be incorrectly recorded. Everytime this happens I'm secretly worried that, somewhere in the collective insanity that is Manhattan, the real Betty Piper lies waiting, wondering when the dotors are finally going to schedule that cardiac cath she's been needing. And God forbid Betty take a trip uptown to visit the hospital, because she'll probably be very surprised when they try to hit her with a lung transplant.
In fact, I'll bet Betty doesn't even know that today she went to the doctor, that her PFTs were down to 33%, and that her doctor put her on oral Cipro to try and stave off what might be the start of yet another cruddy CF exacerbation. And since she doesn't know she has CF, she probably won't be all that pleased to learn that she's gained 6 pounds since her hospital admission in April (she probably won't even remember the hospital, come to think of it). She may or may not know enough about antibiotics to be excited by the fact that she's no longer on TOBI at all -- instead she'll be doing one month of Azli alternating with one month of Colistin. She also probably won't know that Colistin used to cause her to have really f-ing annoying coughing fits, but I'm sure she'll learn.
Of course she also gets to do TWO Great Strides walks in the next couple of weeks, and she gets to meet some of my wonderful CF friends, so I guess its not all bad. I just hope she likes walking with O2, because her sats really haven't been that great lately. Luckily she's been kicking ass on the treadmill (and STILL gaining weight - GO BETTY!) for the past couple of weeks since her discharge, so she should be in great shape to raise some money and walk her newly fattened ass off!
Poor, unsuspecting Betty. She has no idea what a crazy, tough, beautiful world she's stumbled into, but I'm sure she'll update . . . just as soon as she gets her footing.
Surprisingly, despite its rather ridiculous name, The Betty Pepper actually floats. Don't get me wrong, I wouldn't strike out for Japan in the thing, but it does just fine lazing its way around Lake Pend Oreille in Sandpoint, ID (which is, incidently, the birthplace of Sarah Palin as well as the loaction of my parent's lakehouse). The Betty Pepper and I have spent a lot of time doing truly ridiculous things, like fishing for trout using bubble gum as bait. Don't ask.
Anyway, the point of this story isn't actually boats, because to be honest, the only really interesting fact about this rusty little sailboat is the fact that it's actually named after me. Well, kinda. See, when I was born the nurse couldn't believe anyone would be so crazy as to name their child Piper, so she inverted my first and last name (and butchered both, I might add) to come up with the only slightly less weird name: Betty Pepper. And apparently not too much has changed in the last 27 years, because the other day I received a phone call from my transplant team informing Ms. Betty Piper that she has a cardiac cath scheduled for next week. If I see her, I'll be sure to pass on the message.
How people get "Betty" out of "Beatty" I'll never really understand. What word in the English language has a silent A? Seriously, I can't think of one. And even if one does exist (I'm fairly certain it doesn't), who spells Betty with an extra A thrown in for kicks? Would any parents ever really subject their child to a lifetime of mispronounced names just to satisfy their desire to stand out from the crowd in the spelling department? Is Betty by itself so totally boring that we have to start adding random letters just to jazz it up a little?
Even more perplexing is the fact that throughout my life this mistake has been made about 50 times, and probably 49.5 of those times the culprit was an employee of a hospital. The hospitals have changed, the nurses have changed, but the overwhelming urge to call me Betty is apparently universal. Maybe Piper is such an odd name that "Beatty" actually seems LESS ridiculous. Maybe all the nurses in the world got together and decided to play history's largest and longest-running practical joke for 27 years. Maybe I just really look like a Betty. Who knows?
The thing is, the medical context is probably the one place I really don't want my name to be incorrectly recorded. Everytime this happens I'm secretly worried that, somewhere in the collective insanity that is Manhattan, the real Betty Piper lies waiting, wondering when the dotors are finally going to schedule that cardiac cath she's been needing. And God forbid Betty take a trip uptown to visit the hospital, because she'll probably be very surprised when they try to hit her with a lung transplant.
In fact, I'll bet Betty doesn't even know that today she went to the doctor, that her PFTs were down to 33%, and that her doctor put her on oral Cipro to try and stave off what might be the start of yet another cruddy CF exacerbation. And since she doesn't know she has CF, she probably won't be all that pleased to learn that she's gained 6 pounds since her hospital admission in April (she probably won't even remember the hospital, come to think of it). She may or may not know enough about antibiotics to be excited by the fact that she's no longer on TOBI at all -- instead she'll be doing one month of Azli alternating with one month of Colistin. She also probably won't know that Colistin used to cause her to have really f-ing annoying coughing fits, but I'm sure she'll learn.
Of course she also gets to do TWO Great Strides walks in the next couple of weeks, and she gets to meet some of my wonderful CF friends, so I guess its not all bad. I just hope she likes walking with O2, because her sats really haven't been that great lately. Luckily she's been kicking ass on the treadmill (and STILL gaining weight - GO BETTY!) for the past couple of weeks since her discharge, so she should be in great shape to raise some money and walk her newly fattened ass off!
Poor, unsuspecting Betty. She has no idea what a crazy, tough, beautiful world she's stumbled into, but I'm sure she'll update . . . just as soon as she gets her footing.
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