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.
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.
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Number 1! Awesome! Now it's just a tiny bit more patience and then the (even better) good times will roll :) Xx
ReplyDeleteHi -- congratulations. However morbid it sounds, it's good to be high on the list going into the holidays. Lots of driving. . ..
ReplyDeleteI've been thinking about posting this comment for a while. I don't want to intrude and I don't know you at all except from the cf2chat site and occasionally from here. But, there are so many people struggling post tx right now, and I've been thinking of them a lot, as I believe you have too. And I thought that might be frightening, a little, for someone who is waiting. I know you already know there can be very good outcomes too; I wanted to share another, ours. Will had his tx in 2001 and really for 3-4 years he couldn't get sick if he tried. He had a wonderful outcome, left the hospital after only about 12 days, lung function went up quickly and tended towards 110%. He rowed every day and coached rowing for years; we still have kids from that time come by the house occasionally. Here's a link to his story in his own words, from back then.
http://cystic-l.org/html/Hutcheson.htm
Full disclosure -- he is sick now, 8 years post tx, and getting sicker; but that is mostly the result of a relatively uncommon complication (PTLD) and the lung function he lost during treatment for it. If I remember correctly that is not likely to be a concern of yours since your EBV positive.
I hope this is helpful in some small way. Best,
Elizabeth
Whoa, number one? What's your blood type? Yea, take a little time to process it, cry it out. When I got the news I was in top 25% last week, my heart about stopped!
ReplyDeleteWOOHOO for being #1!!!!!!!!! That is great news! Do ya have your bag packed my friend?! :0)
ReplyDeleteWow #1!!!!! I'm so happy and excited for you Piper :)
ReplyDeletePiper, thanks so so much for linking us up to this blog. And congrats on being the #1 we've both known you are for a long time. ;) I hope that your birthday and time with your family this weekend are awesome and know that in giving thanks this year I will be saying a little extra thanks for you.
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