Community Faces: Katie

Every so often an email comes through my inbox that just makes sense. Every word resonates in some way, the experience makes me smile, the determination through the page makes me believe that cystic fibrosis is NOT and WILL NEVER BE stronger than us and our will to get out there and live. And I'll be honest: I need these notes, a lot. Because while I truly appreciate every message I get from the CF and tx communities -- I want to share our hard times, our struggles, the good with the bad, and the entire spectrum of emotions that come with this beautiful gift called life -- sometimes we all need to take a little "virtual honeymoon."

That's why I love this next Community Faces guest blog so darn much. It is strong. It is real. It is determined. It is her and it is US -- every single one. Thank you, Katie, for sharing your story, and for your choice to continue living loudly for a long time yet to come.

Community Faces: Sounds from the Underground

Name: Katie Fielding
Age: 31 with CF
CF Stats: Diagnosed at 1 year old, Double DF508
Find her at: www.katiefielding.com or @katief on Twitter and Instagram

Click. Click.

Last summer I was taking pictures in Finland.  I'd been there a few days when I realized the pain was back. Back in my finger that laid on the cameras shutter.   Only a few months before had I felt this pain for the first time.  The doctors and I had still yet to figure out if it was an allergic reaction to a drug or CF related arthritis. At this point the verdict was clear, CF arthritis was going to be a new presence in my life.      

What do to in a foreign country? I had just started 5 weeks of travel for which I carefully planned how to handle all my meds; I wasn't about to go home over some joint pain.  I went to the internet and looked up the Finnish name for the drug that I could take that would help.  I went to the apotek and find that I am able to get it there over the counter.  I know that the pain will soon subside.  

My honeymoon won't be ruined and won't be cut short. Even though I have been on many honeymoons before--and I am not even married.  I take honeymoons all the time. I take those trips that people "wait" for.  The dream trips.  Im planning another one as I write.  

Its because of CF that I don't wait to take these trips.  I don't need a special occasion or even a travel partner. I want to see, do, and taste now.  I want to experience it all, before the day Ill have to pause to breathe. I know that if CF teaches us anything about life, it is that NOW is all we have.  Those of us who breathe for a living, also have to live for a living---it makes all the research dollars and scientists work all the worth while.  I fight CF by living loudly. 

When I get on a plane or ride in a train, a part of me thanks all the things that brought me to that moment.  My parents, family, and friends who have undying support for me, and the CF Foundation and my doctors who have provided me tools to be heathy enough to see the world. 

Ill keep on traveling for myself--and those with CF who cannot.  

Community Faces (Interlude): Me, Myself, and Bob

Alight, guys, I know everyone is excited for the next wonderful story from our amazing community, but because so many of you have asked (and because when I started this blog I vowed that it would be an honest chronicle/outlet for my journey through this crazy world we call CF and lung transplant), I decided to take a brief interlude to fill you in on another CF story that many of you may already be familiar with: mine.

As most of you probably know, May is National CF Awareness Month and also the month when most of Chapters hold their largest national CF Foundation fundraiser, the Great Strides Walk to Cure Cystic Fibrosis. This year, totally to my surprise, the CFF decided to use one of my quotes along the course. It was an unexpected honor that, quite frankly, makes me proud to be a very small part of the fight for a cure. It reads, "I was told not to go to college, then not to study abroad, then not to go to law school, then not to work at a firm. But here I am." The quote was taken not long after my double-lung transplant back in 2010, and it was meant to convey that people with cystic fibrosis can often accomplish the unexpected regardless of the limitations that CF tries to put on us. Note that I don't consider any of these accomplishments particularly extraordinary in and of themselves -- it's their very normalcy that makes them, in my mind, so spectacular. The fact that I, as a person with CF, have been able to go about the very average and ordinary business of living out my dreams and planning for a future is, to put it mildly, a blessing beyond my wildest dreams. And while it may have taken a little extra determination (and stubbornness!) on my part, it was really all of YOU who helped so much to make this ordinary/extraordinary life I love so much possible. Thank you, sincerely, for all you do to help cure cystic fibrosis and allow so many of us to live healthier, stronger, and more extraordinarily ordinary lives.

But, of course, some medical truths are not all sunshine and (65) roses. In my case, the other side of the coin is that I am back on IV steroids at a ridiculous dose (1,250mgs daily by IV) to help combat the rejection found in my latest bronch -- yet another factor in my seriously lackluster lung function as of late. I am also taking antibiotics through a variety of different delivery methods (Cayston, anyone?) and have to repeat the bronch in a couple of weeks. My ever-diligent doctors are running every test under the sun, from lung perfusion scans to cellcept trough levels (so rare no nurse coordinator at my tx center had ever run one) to, of course, PFTs and CT scans and all that jazz. 

The other truth of the matter is that I'm hopeful. I'm hopeful that we can resolve the clots, rejection, and infection and get my PFTs up, even if not quite as high as they were before. I'm hopeful that with carefully monitored exercise I can increase my activity tolerance and my O2 readings, as well as get my HR down to something resembling what I'd like to see. I'm hopeful that we can at the VERY least stabilize things more or less where they are and that I can work from there to make my life wonderful and fulfilling and long within the constant realities of cystic fibrosis and transplant. I'm hopeful that we can cure this little monster and that no one with CF today will have to go through transplant, miraculous as it is. I'm hopeful about a lot of things, frankly, because that's my choice. And even though hopeful doesn't mean I never get frustrated or scared (believe me, I do -- on both counts), it does make those very human emotions a little easier to deal with when they bare their ugly teeth. So I am hopeful, and I am grateful, and I am happy, and I am . . . really super hungry? Thanks for that one, steroids.

I recently did an interview segment with Everyday Health entitled "Outliving Cystic Fibrosis." I described it on Facebook as the story of CF, community, and "cysterhood." It features cameos and picture shots of some of my truly incredible CF friends out here in NY, and it does a beautiful job of highlighting the delicate balance of faith and fight that characterize life with "our little monster." Please take a second to watch the video, and thank you so much to Everyday Health and their wonderful team for joining the fight to spread CF Awareness.

Everyday Health: Outliving Cystic Fibrosis

So there you have it: the good, the bad, and a chance to put a voice with the blog! Hope you enjoy it, and please tune back in for more Sounds from the Underground coming up soon.

Love, light, and HEALTH, beautiful people. 

Community Faces: Lisa, Chris, and Max

When I speak on behalf of the CFF or at CF education days, I often lead with a story that has become a powerful part of my family's personal folklore: my diagnosis. At 6 weeks old, I was admitted to the hospital with a diagnosis of double pneumonia, spinal meningitis, and failure to thrive because I hadn't yet regained my birth weight. My parents were told that they would need to stick around for a few days while the doctors ran tests to figure out what was wrong with me, and as they settled in a young girl of about 6 pushed an IV pole up to the hospital room door. She introduced herself and asked what my parents what was wrong with their baby, and when they responded that they didn't know yet she added that she had "sixty-five roses." My father later asked the nurse what that meant and looked up the term "cystic fibrosis" in a medical dictionary. When he read the definition he turned to my mother and said simply: "well, Kathleen, at least we can be grateful she doesn't have that." I was diagnosed a few days later, and the doctor explained the prognosis as "just take her home and love her as long as you have her."

I'm so grateful they didn't listen.

Each CF family has a different diagnosis story, and each is super powerful in its own way. Diagnosis with CF -- whether it comes at 6 weeks or 60 years -- is a powerful, life-changing event. And because 70% of CF patients are diagnosed before the age of 3 (a number significantly increased by newborn screening, which is now mandatory in all 50 states), it is most often the parents who feel the brunt of that initial diagnosis moment. I like to think that doctors are no longer telling parents that the best they can do is take their child home and wait for the inevitable, but that doesn't make it easy, and it doesn't make the stories any less an indelible part of each CF family's personal journey.

Today I'm thrilled to feature a Community Faces guest blog by Lisa Sankey and Chris Brungardt about their son Max. As always, CF parents (and their awesome kids) never cease to amaze me. Thanks, Lisa, for sharing your story!

Community Faces: Sounds from the Underground

Names: Lisa, Chris, and Max
Connection to CF: CF Superparents and son, Max
Age: Max is 9 years old with CF
From: N. Dakota
GS Team: Team Max Fargo

We didn’t have a clue that we were carriers of the CF gene.  No family history, nada.  After a normal pregnancy, our son Max was born.  Later that day, he took his first airplane ride when he was life-flighted to Children’s Hospital in Minneapolis for a bowel obstruction due to meconium ileus.  Seems the local pediatric surgeon was on vacation.  We knew nothing about cystic fibrosis other than what we’d seen on an ER episode regarding lung transplants.  Suddenly we were learning about bronchial drainage (bds) or beatments as we called them, nebulizers, enzymes… 

Initially we were worried that he’d always be the sickly child.  In and out of hospitals. Missing school, not have any friends or a normal life…  We got into a routine with treatments, meds.  He started daycare.  We found a place which focused on exercise, outdoor activities year round.  He thrived!  We’ve enrolled him in different sporting programs ---- swimming, skating, tennis lessons, gymnastics, and baseball.  He still hasn’t found his niche, but stays fairly active.

Knock on wood… We’ve been quite fortunate with his health.  A few colds, sinus issues, exacerbations requiring oral antibiotics….  We attribute it to maintaining a consistent regimen – chest physiotherapy via the vest 3 times a day and medications made possible through efforts by the CFF.  And vigilance…  We do realize things can easily change for the worse. He’s had one hospitalization since his original NICU stay which occurred a few years ago and was due to a bowel obstruction cause by adhesions from his surgery as an infant. Today he’s an active, happy 3^rd grader.  He’ll be 10 years old in June.  His mutation is Homozygous Delta F508. 

Our Great Strides name is Team Max Fargo.  We also participate in the Fargo Brewers Ball for Cystic Fibrosis, which will be on October 4^th.

Here’s this year’s video we put together for this year’s CF walk.

Community Faces: Christy Hamilton

As promised, today kicks off our official celebration of CF Awareness Month at A Matter of Life and Breath! So far we've received many wonderful stories/creative pieces from around the CF community, ranging from topics like parenting with cystic fibrosis to learning of a child's diagnosis for the first time to traveling in Europe and searching for meds. Just as a reminder, ALL stories and perspectives are welcome (we could especially use some more voices from the parent/spouse/friend/family member arena) and no format is off limits. All you need are the following elements:

1. Your name (first, first/last, or pseudonym acceptable), age, and a picture;
2) Your story, however you choose to tell it (limited to a few paragraphs, please!);
3) A few of your personal "CF statistics" (be creative: age of diagnosis, mutations, GS team name, etc).
4) Email the above to matteroflifeandbreath@gmail.com

Poetry, fiction, personal essays, creative works of any kind -- let's show ourselves (and the world) that CF stands for CREATIVE FORCE!

Today's first (and very special) guest blog is from a dear friend and fellow CF/transplantee. Christy is a force in the CF community -- there's really no other way to describe her. She is also, as you'll read for yourself, a wife, a mother, a sometime photographer and photoshop guru, a blogger, and a fashion forward super mama. Or, in other words, she's totally awesome. But don't take my word for it, see for yourself.

Community Faces: Sounds from the Underground

Name: Christy Hamilton
Age: 42
CF Statistics: Survivor of living-lobar lung transplant and living-donor kidney transplant; married; 17-year-old (and absolutely beautiful!) daughter.

I was born in 1970 to a wonderful, loving family. After a diagnosis of failure to thrive, I was tested for CF at 16 months of age. That test showed that I didn't have CF, but over the years, things got worse, and after seeing a specialist hours from home, I was finally given the diagnosis of CF at the age of four. I don't remember my childhood being different than anyone else's except for some chest pt daily and enzymes with meals to digest my food. I was a cheerleader in high school, an aerobics instructor, and a lifeguard in the summer months.

My first hospitalization for CF wasn't until the age of 23 after a bout of the flu that led to pneumonia. I was in nursing school at the time pursuing my dream of helping others. Marriage, graduation, a new nursing career, and giving birth to my beautiful, healthy baby girl all followed.

At the age of 28, I developed an infection called Mycobacterium Abscessus. I deteriorated from that so fast and needed a lung transplant at the age of 31. Both of my lungs were removed, and I received a lobe from my mom and another from my uncle. I needed a kidney transplant seven years later, and my mom was also my donor for that. She has given me life three times!

Today, married to my second husband Jason and having lived 11 1/2 with my new lobes and 4 1/2 years with my new kidney, I am loving life! I remember asking my doctor when my daughter was five if he thought I would live to see her graduate from high school. He said that he absolutely thought I would. She graduates in 13 months, and you better believe I plan on being right there with her! God has blessed me in so many ways! Raising money for the Lung Transplant Foundation, which helps fund research to extend the lives of those with lung transplants is where my focus is regarding charitable work. Getting a lung transplant recipient off the table isn't enough!!!

**BLOGGER CHALLENGE: Community Faces**

April showers bring May flowers -- 65 roses, to be exact!

May is National Cystic Fibrosis Awareness Month in the US, and a Matter of Life and Breath is getting in on the fun. Even better, we want YOU to get in on the fun too. And since you all have been so patiently (no pun intended) reading my ramblings for so many years, I thought it was only fair to give you a break. Or, rather, give you a blog.

I'm super excited to announce a new CF Awareness Month project entitled "Community Faces: Sounds from the Underground." Throughout this month, I will be featuring a series of short, personal guest blogs by members of the CF community. And by "members" I mean, well, all of you. I mean CFers of all shapes, ages, sizes, and gene mutations; I mean parents and siblings and spouses and grandparents and maybe even that nutty cousin you only let out on special occasions; I mean friends, volunteers, caretakers, and support systems; but most of all I mean dreamers, believers, and nutty folks like me who think that everyone has a story and who would like to a second to share theirs with some totally cool people/readers. I mean writers, which of course means all of us.

This project aims to spread awareness and to highlight some of the beautiful Community Faces of cystic fibrosis. We are 70,000 people worldwide coming from all types of experiences, backgrounds, beliefs, and cultures. That's 70,000+ amazing stories of strength, courage, humor, achievements, wonderings, wanderings, and LIFE. I can think of no better way to celebrate CF Awareness Month 2013 than to let some of you all strut your stuff.

So here's the nitty-gritty:

 

Posts should be no more than a few paragraphs in length (blog size) and must be in some way related to life with cystic fibrosis. The rest, however, is completely up to you. You can write about your health, your achievements, obstacles you've overcome, your family, he future of CF research and what it means to you personally, or just your own perspective of life with chronic illness. You can write a funny post, an inspiring post, a memorial post, a hard post, or any other sort of post. The only rule is that the tone MUST be respectful of others, and please be mindful that I try and keep the language on this blog reader-friendly. 

Please email your story along with your name (first or first/last is fine), age, a picture (need not be CF related), and a couple of your personal "CF stats" (examples could include age of diagnosis, Great Strides team name, mutation combo -- be creative) to me at:

matteroflifeandbreath@gmail.com (NOTE: there is no "a" at the front). 

And just like that, we can write the next chapter of CF awareness together. Happy writing, beautiful people!

PacMan on Steroids...

. . . meet PacMan on Pulmozyme.

A few days ago, I got an email from a CF mom asking me if I'd tried "Muck Busters!" -- the new mucus-clearance video game from our friends and longtime CFF drug-development partners over at Genentech. (For more information on the game, please visit this post at CF Roundtable.) I hadn't, but I offered to download it (it's free) and give it a whirl so she could hear "a CF perspective" before passing the game along to her 9-year-old son. 45 mins, 5 levels, the start of possible carpal tunnel syndrome, and just the teeniest bit of competitive spirit later, I emailed her my thoughts and she suggested I post them on the blog as well. And here we are.

What I think is most striking about this app/game is this new notion that treatment time can and should be fun for kids, and that they should have some sense of what their treatments are actually doing for their body. I think this is an awesome idea, I just don't remember it being very popular with the pharma companies when I was young. Back then there was no "Bubbles the Fish" neb mask, no colored Vests with decorative stickers (those actually came out the year I got my transplant), and certainly no iPhone "hey, look, CF is cool!" apps. Quite honestly I wish there had been, and I'm thrilled that this disease has reached a point where children are encouraged to actually TAKE OWNERSHIP of CF, in the sense that they should understand the meds (at least a little), make the Vest their own, and yes, even have a little fun with it all. So right off the bat, kudos to Genentech for helping make CF a little easier.

That said, the game itself proved anything BUT easy, at least to my 31-year-old, half-over-the-hill fingers. There are 5 characters: Mr. P (who tunnels through mucus and breaks down DNA),  Andy Antibiotic (who sprays bacteria with his fire extinguisher), Broncho Bob (who opens airways), Shakey (who wears a vest and generates enough power to move things around on the screen), and Hydrator Hank (who uses a hose to clear the cut-up DNA off the screen). The object is to use Mr. P to tunnel through the mucus and clear it off the screen before time runs out. Bacteria get in his way and have to be removed (you have to switch characters to do that) and DNA strands have to be cut up before he can get around them. In other words, it's a little like playing PacMan  -- only in this case PacMan happens to be running around in a pair of CF lungs. Poor dude.

Right off the bat I started playing the game incorrectly, despite knowing the "rules." A CF adult to the bitter end, I was hell bent on killing as many bacteria as possible, even returning to areas already cleared of mucus to attack (bacteria will reproduce, so they're constantly popping up around the board). It got so ridiculous that my non-CF friend who was watching/playing with me had the following to say:

Her: Stop killing the bacteria! Why are you doing that?!
Me: What else should I do?
Her (excited, nearly grabbing the phone): Clear the mucus! Clear the mucus! (Yes, that happened.)
Me: But if you leave the bacteria it's going to get resistant!!
Her: (blank stare)

The point of this game is to clear mucus. Mr. P. is the star. Shakey the vest can't clear mucus -- he just moves bacteria out of the way. Broncho Bob opens airways that serve as shortcuts to the mucus -- he doesn't clear it either. Hydrator hank clear DNA remains, but he can't clear mucus, and neither can Andy Antibiotic, for obvious reasons. So for the purposes of the game you need only open airways if you plan to use the shortcuts, and you only need to hydrate your airways or clear infection if stuff is in your (Mr. P's) way. Oddly enough, you'll win more in the lower levels if you leave Hank and Bob alone altogether. Later on, they become helpful.

What's cool is that the star players make sense in CF land (Mr.P/pulmozyme, Andy Antibiotic/abx, Shakey/Vest, Hydrator Hank/HTS, Broncho Bob/bronchodialators) and the obstacles do too. The game has bacteria, "boss" bacteria (harder to kill), mucus, clogged airways, improper DNA, and -- most hilariously -- white blood cells that you can't kill at all but which will eventually run into bacteria, become inflamed, and explode obnoxious DNA all over the screen. The DNA makes the mucus harder to get through and means extra work for Mr. P. And that, my friends, is science.

All in all, I told my CF mom friend that the game is, in my opinion, totally appropriate for slightly older CFers with enough coordination to actually win a couple levels and enough understanding to know that, at the end of the day, CF is not a video game. The best thing about the game to me came with the understanding that different meds/therapies play different roles in our health, and if a game by the makers of Pulmozyme wants to place extra weight on mucus clearance above bacteria, well, can you really blame them?

So now it's your turn, adults and parents. My CF mom friend would appreciate some more feedback, and I'd love to hear your thoughts. Is this is a good thing for the CF community? Do you think it would have changed your CF experience to have games like this as a child? What are your thoughts on how to make treatments "easy" and keep kids educated about their (okay, OUR) disease? And for those of you who have played "Muck Busters!", feel free to share your experiences. Thanks!

Guest Blog: Friends for LIFE (Part 2)

When I set up this blog I wanted it to be about "Life, Lung Transplant, and Cystic Fibrosis. And Everything In Between." What I learned very quickly is that none of these -- not life, not CF, and certainly not transplant -- is a solitary journey. Because of that realization, A Matter of Life and Breath has been proud to have a number of wonderful "Guest Bloggers" ranging from my friends and family members to a couple of folks who are themselves CFers, organ recipients, or other fellow travelers. All of these contributions have been beyond awesome and so so meaningful. That said, I'm not sure any of the guest blogs to date have touched me personally as much as this one.

I first met Jess after her amazing gift, at an event to support the Cystic Fibrosis Foundation. She was vibrant, full of energy, and clearly excited to be giving so generously of her time and herself to support her friend. Jess ended up saying a few words that evening about why she was there, her gift to Allison, and the importance of supporting the search for a cure. As I listened to her words, I thought back to the statistic that one organ donor can save up to eight lives. Hearing her speak, it became crystal clear to me that while one single donor may directly save eight lives, the impact of that gift is far more widespread. When Jess offered Allison the gift of life, she offered me and many others who love Ali deeply (herself included) many more years with our daughter, sister, "cyster", and friend. She offered everyone who will ever come into contact with Ali the chance to be touched by the miracle of organ donation. She offered all of us with CF the gift of hope, and compounds her gift through the volunteer work she and her friends continue to do for a cure. In every single smile or laugh or good work Ali does for the rest of her long and healthy life, Jess will be a part of that. And she offered all of us the gift of inspiration with her truly HEROIC act. And that, beautiful people, is the gift I want to share with you through this blog. Jess -- our friend, our hero -- take it away:

The Gift

My I.V. was started by a young male intern, who to me, appeared to be approximately sixteen years old. As I inspected his credentials and braced myself for yet another needle poke…hmmm, probably for the twentieth time over the last few months of testing, I closed my eyes and thought of Allison. Across the holding area, behind her own curtain, she was also being pinched and stuck.

When the surgeon initialed my left side with a sharpie, I felt strong, calm, and at peace - with those initials on my side; at least we know they won’t take the wrong kidney. It wasn’t until I had to take a walk with the intern, who now looked like he was about fourteen, that it all seemed to hit me - I’m putting my life into their hands… I’m trusting the doctors and nurses to get me through this… More than that - I’m trusting God to get me through this.

When the doors opened to the operating room, all I could see was sharp, shiny metal…suction looking things…more metal. And a man covered head to toe in scrubs with a splash mask. As two nurses and the twelve-year-old in scrubs helped me up on to the table, I felt tears streaming down my face – when did I start crying? When I was asked to sign another consent form and state the purpose of my visit to the Columbia-Presbyterian O.R., oh hey I had nothing else to do today, I realized that reciting “laparoscopic nephrectomy of the left kidney for donation” while shaking and crying was harder than I thought it would be. I felt the fragility of my life all at once.

Then, it happened. The calm, still, quiet voice I had been listening to in the months prior when everyone looked at me like I had ten heads, washed over me like a warm wave. In my mind and body I was experiencing the greatest fear I had ever felt, but in my heart….down all the way to the bottom of my soul – I knew God was leading me forward and that I had to follow. I had to get to the other “side” of this.  And I did. I woke up four and a half hours later feeling like Rocky after he defeated the Russian. Beat up, but man was I a champ! I didn’t let anyone, or anything, not even a little fear, stop me from doing what I believed I was meant to do. If there was ever a moment where I thought, hey I’m not so bad, it was then.

After an entire day in recovery, I was moved to a bed on the seventh floor, to a unit reserved for transplant patients. It was then that my life changed.

My first roommate had had a kidney transplant from a deceased donor. She was sitting up on the telephone calling a car service to pick her up from the hospital. She walked over to say hello to me. I thought, wow she’s tough. My second roommate had a kidney and pancreas transplant from a deceased donor. She was in and out in a matter of one day. I listened to the nurse’s discharge instructions for my roommate and could not believe the amount of medication she would have to be on for the rest of her life. By the evening of the second day, I was able to get myself out of bed and walk. I had to walk. I had crippling pains and knew the only way to feel better was to get moving.

And I have to see Allison.

I cannot describe how great it felt to see my friend again. It seemed like she had been in recovery forever. Still experiencing complications from surgery, there she was – awake and alive. Sitting next to her in a chair and watching her smile at me, I could see who the real champ was then. It wasn’t me – it wasn’t me by a mile. Lying there in front of me was the strongest fighter I had ever met. I wandered the halls for hours, marveling at the fact that there were a lot of people on our unit, transplant patients like Allison, who had been waiting. In fact, each room was occupied, other people shuffling slowly in hospital gowns passed me in the hallway.

At around one a.m. on the final night of my stay, I received a text from Allison about her good friend Katy. Katy is considered one of Allison’s “cysters”, a term a group of girls all battling Cystic Fibrosis call each other. She was in the hospital, on our floor, waiting to hear if a pair of donor lungs would become hers. I didn’t sleep much that night, and at the first sign of day break, I found myself eager to go to Allison to find out what was happening.

Despite the early hour, the waiting room I passed was full of people…probably Katy’s family, I thought. In Allison’s room I was introduced to another cyster there to support Katy. When Lyndsey, also a double lung transplant recipient extended her hand and called me a hero – I found that I couldn’t speak. She asked if I’d like to come and meet Katy. I followed her to a room down the hall and looked in. There she was, so young, beautiful, with two blonde braids, and an I.V. sitting calmly. She called me a hero, just as Lyndsey had, and I can’t tell you how strange that word sounded coming from these amazing girls. It was the single most humbling experience of my life. I felt overwhelmed with emotion watching Katy sitting there, waiting to know if those lungs would be hers. If she would be able to take a deeper breath.

I muttered something; you’ll be in my prayers was it? And as I turned to walk away I felt the full weight and importance of that moment. In the face of all of that uncertainty and doubt, Katy looked at me and could see beyond her fear. She thanked me. Still awe struck, I had to remind myself of what for. I sat in silence in my room for the next hour and let the realization come over me that my friend Allison had once waited in just this same way. For lungs which finally made their way to her in 2004, and then for my kidney.

One day after being released from the hospital, there was Allison, sitting on the end of my couch eating a gigantic turkey hero as I shivered under a blanket. Is she made of steel or what? Things slowly went back to normal. My pain was moderate; the recovery itself has been more of a process than an overnight experience. I am tired often, but have the blood pressure and urine output of a normal person. I can jump, dance, go crazy with my kids, and keep up on a long walk. Allison and I laugh and hang together just like the old days.

 But I am different – forever changed. In giving, I have received the gift of becoming truly grateful. Of realizing how fragile and temporary life is. Those few days I spent on the seventh floor of Columbia Presbyterian gave me a glimpse into a world most people don’t even realize exists. A world of waiting, a place that exists where there are no simple answers or miracle cures. A world where each and every day people pray that their call will come – people with families who care, sick women, men and children from all walks of life. And what binds them is that they’re all hoping for the same thing - the chance that there is someone out there who will match, someone out there who has taken a few minutes to fill out a form. Someone who can bring life to the waiting.

Take a moment, be thankful for those heroes, and then register to DONATE LIFE!