A Matter of Great Importance

Okay guys, this is me.


No, I am not posting this so you can laugh at the puffy doctoral hat (although it is one of the weirder traditions in academia, I'll admit). No, I don't think I look awesome in "Columbia University Blue" (although I look darn good in the Columbia hospital gowns, if I do say so myself). And, believe it or not, I am also not posting this to showcase the goofy smiles my family tends to adopt in posed "proud moment" photographs (although that could be a post in and of itself, I promise).

Honestly, I'm posting this picture because it was one of the proudest moments of my life. Because it captures the day when I graduated from law school, CF and all. It captures my family (sans my wonderful sister, who may well have been behind the camera for this picture), and goofy smiles and all, it captures an instant we'd all dreamed about since I was young enough to toddle around starting arguments with people.

And, I'm also posting this because it relates to all of you.

I recently received this message in my inbox:

I came upon your blog and after reading “Quality Control” from March 7^th and seeing the way your parents stressed education and encouraged you to pursue your dreams, I thought you and your online followers might be interested to hear that the 2010 SolvayCARES^SM Scholarship contest is now open for applications through May 15, 2010 at www.SolvayCARESScholarship.com.

The SolvayCARES^SM Scholarship was created to honor young adults with cystic fibrosis as they pursue goals of post-high school education. In 2010, 40 SolvayCARES^SM Scholarship recipients will be announced, and each one will receive $2,500 for use during the upcoming academic year. To celebrate the 18th year of the SolvayCARES^SM Scholarship, this year's Thriving Student Achiever will be awarded $18,000 in place of the $2,500 standard award.

Please feel free to post this contest information on your blog and share it with your community as you see fit. You can find complete information on the scholarship at www.SolvayCARESScholarship.com, including a link to the 2010 scholarship application.

I personally know people who have participated in this scholarship, and I know it can mean a world of difference for CFers interested in pursuing college or graduate school. This year, as you can all see, it is even bigger. I can't stress enough what an honor it is for me to share this link, to encourage the CF community to go out there and get that degree you never thought you'd live to see, or that your doctor told you might not be possible, or that you just never had time to pursue. Because let me just tell you all, without hesitation, that these past few months have taught me the truth of what I always considered a pretty tired and overused cliche:

There's no time like the present. Seriously.

I hope all of you will consider applying, and even more that you'll consider (with gusto) all of the many, many options open to CFers when it comes to life, education, and career. And, perhaps selfishly, I hope that you'll all take lots of pictures along the way.

New Post

I feel like I need a new post. Today is Easter -- a celebration of New Life and spring and grace and love (or at least that's how I see it) -- and if there were ever a day deserving of a new post, I think this is it.

Today was lovely.

Okay, so I don't mean to romanticize it. Today was not my most relaxing Easter, to say the least -- my throat is sore, my brain is still a bit confused and addled, my body has multiple holes in it that I keep discovering, and my oxygen is low. I'm tired, and drained, and a little loopy and beat up (but hey, you should see the other guy!). And to top it all off, my father went out yesterday AFTER the "damp run" and decided to blow off steam with a bike ride around Manhattan. All well and good until someone drives a van out in front of you and you end up in yet ANOTHER New York City ER getting stitches in your lip. And would you believe the man had the decency not even to call those of us back home trying to sleep off the ICU? He just got his stitches and rode his bike back to the apt. Needless to say we were all a bit befuddled when he sat down at the table with a busted lip and a sprained wrist. (On the bright side, it takes some of the attention away from me and my battle wounds!)

But today, of all days, truly was lovely.

Today I took my puppy on two walks, balancing a leash, a gimpy father, and portable O2.

Today I ate an amazing Easter dinner with my mom, my dad, and my amazing sister, with my puppy at my feet.

Today we finally talked about what happened, shared the funny stories about half-awake conversations and waiting room drama -- and were actually able to giggle at (almost) everything that went down.

Today I took a really, really hot bath.

Today was 75 degrees in New York, and I spent time outside with my puppy in the dog run, watching him play (or not play) with all his friends and neighbors.

Today my parents presented me with an Easter basket for the first time in years.

Today I breathed, perhaps not as deeply as I thought I would be breathing, but with lungs that still work and with air that means I am still alive.

Today I spoke with my wonderful doctor, again.

Today I did exercises in the apartment until I could feel my muscles starting to respond, and felt the fogginess sort of melting away.

Today I watched The Blind Side with my family. I loved it.

Today I learned that rebirth doesn't just come from transplant, or from great events, or from even that Ultimate Sacrifice that God made for us. Today I learned that sometimes new life just means waking up and seeing things a little differently -- knowing that even when things go wrong, even when we're a little beat up and a lot disappointed, we can still keep breathing.

Today was a really, truly, honestly, lovely day.

Stranger than Fiction

hi everyone.

i'm awake and at home - discharged directly from the ICU around 10 am this morning after coming in from the OR around 2:15 am. i will try and explain what happened (although it's hard for me to wrap my own head around, i fully admit!), but please keep in mind that much of this is what lawyers call "hearsay" -- meaning i heard it from someone who heard it from someone else, and possibly the line goes back even further. suffice it to say that it went more or less kind of sort of like this:

the harvest team had already examined the lungs and was ready for the operation, and the lungs were very close by to columbia so i had to be put out before transport so i could be ready by the time they arrived. donor hospital made a last minute decision to allow the liver harvest team to resection the liver FIRST (contrary to most every hospital which allows lungs and heart to come out first). somehow i still got put under b/c the liver operation was supposed to take less than an hour. liver operation took 4 hours during which time the lungs (and i believe the heart) were lost due to no O2/blood, or possibly b/c of debris or a clot from the liver.

they don't know all of what happened. after it all the lungs never even made it to columbia. one doctor said he believed that it was the first time in 15 years someone at col pres has been put out only to NOT receive their lungs. almost everyone who treated me was crying. i awoke and asked if i got new lungs and they very gently told me no -- after that i was so confused i don't really remember much. i know i asked for my family and was told they were on their way. i know i felt a very weird sense of disbelief and numbness. i think i was just so focused on breathing at that point too that nothing else even really registered.

i'm still confused. i trust god and know that this must have been right, but how? and at the same time, i have NO FEAR about this surgery anymore. is that weird? it's also true. i've done my part. i've made it all the way to the OR and i've endured it all and i've felt that moment of being put under ready to give up my lungs and receive new life. true, it didn't work out as planned, but i also know that i did it. the parts that were in my control, at least. and that's all i can ask of myself, so i know i can do it again.

** NOTE: PLEASE understand that this experience is crazy out of the ordinary -- even bordering on the absurd. although i recognize transplant for the deeply personal and individual decision that it is, please think long and hard before allowing a fluke like this one to put you off of the concept. if i had to go through all of this twice over to get new lungs, i would. i am happy to correspond with anyone who wants to talk about this, and contact info is to the left.**

so here's what i know:
1) i still have my CF lungs -- and NEVER, EVER let ANYONE tell you that CF lungs aren't amazing. because mine survived intubation and general anesthesia at a time when their work should have been over, and they RECOVERED enough to let me come off the vent (apparently without any incident) and make it home. thank you, lungs. i will miss you when our time together is over!

2) i have a transplant team willing to refuse bad lungs even at the last moment, and to face me and look me in the eye to tell me their decision. they are compassionate, caring, competent, and -- above all -- discriminating when it comes to PERFECT lungs. i am so grateful that the first (cognizant) words that i said to my surgeon were "thank you for not giving me bad lungs." he laughed and shook my hand. i was serious.

3) i have a CF doctor with enough insight to get me on the list and to make all this happen when i am still strong enough to endure all these dry runs and even this -- the ultimate in "damp runs" as i am calling it. again, forever grateful. i will always, always be an advocate of working hard to delay transplant, however i will also always shout from the rooftops the importance of going into this process STRONG and not too sick or emotionally fragile to function. this is without a doubt the biggest challenge of my life, and to be able to continue to live through it, and live with it, is a blessing beyond words.

4) i have tiffany christensen's book sick girl speaks, which is the ONLY point of reference i have found to date of a similar experience. i am so grateful to her for putting her experience out there for others. i thought about it and told my mom her story as i recovered in the ICU this morning.

5) i have faith. god is in control of when i get lungs. the universe is unfolding exactly as it should.

6) i have so much light from all of you. i love you all. thank you.

Bad Saturday

alright. so the doctor just came in to tell us, that after putting her to sleep, after putting her on the vent, after the epidural, they realized the lungs were in fact not good.

she's apparently now awake, off the vent, mildly jovial from the drugs and aware (though perhaps not fully comprehensive) of the fact that she did not receive a transplant today.

we'll see her within the hour. i'll let her fill in the additional details tomorrow. send her love and the strength, patience and positivity. perhaps one day, soon, with her strong new lungs we'll look back at this and laugh and thank god that she didn't get those lungs, but rather the lungs she will soon receive. those that will carry her forward.

Wheeled Away...

i'm erin!

first of all, in my brief fifteen minutes of blogette fame, i want to thank everyone who reads piper's blog. you're such a wonderful source of support and we are all so very grateful.

so, as of an hour ago they took her into the OR for final prep and the epidural. they speculated that the lungs would arrive around 2am-however the operation has likely started already. the moment she received the call she claimed these were her lungs, she could feel it.

although significantly less eloquent than pip, i will do my best to keep the updates coming. i'm not really an ace at this, so if i'm not responding to comments and whatnot it is either a) that i can't figure out how or b) that i'm with her or sleeping.

keep the positivity coming. i swear we can feel it! xx.

Drumroll Please...

...It's a GO!

99.9% certain at this point that these lungs are IT! I'll be headed down to the OR in just a few minutes, but I wanted to stop by one more time and send my love and thanks out to all of you. Please keep the thoughts/love/light/prayers/vibes coming -- they are WORKING!

This is going to be good. I can feel it.

In the meantime, my lovely big sister Erin will be here to keep you updated.


Much love, beautiful people.

Piper

Good Friday, GREAT Lungs!

Okay guys, third time's the charm, right?

I got THE CALL for new lungs at 2 pm and somehow I just know these lungs are right for me. I am here at the hospital and feeling SO good about this time, so at peace, and so happy. Today is Good Friday, it's a new season, and it's spring: truly a time of new life, new breath, and REBIRTH. I am so excited!

Thank God for this wonderful, wonderful miracle. And please keep the donor family and the donor in your thoughts and prayers as you send them love and light during this period of loss. I am praying that they have as peaceful a transition as possible, and that this holiday weekend -- a true time of New Life born from ultimate sacrifice -- may bring them the knowledge that their great gift is truly a blessing for so, so many.

My sister will update as possible once we know more and while I am in surgery receiving MY lungs! As always, thank you all so much for your love and support -- I feel so lifted up right now (as I have for the past few days), and I know that is all thanks to you guys and the prayers that continue to come from all over!

Much much love and light to all of you for this beautiful weekend!

xoxox,
Piper