Wednesday, May 15, 2013

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.

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. 


  1. Touching video....thanks for sharing! You always seem to have the right words. Love from Alabama sweet cyster <3 <3

  2. LOVED this! You are a remarkable person. Love your optimism and spirit. You truly are a CF warrior! We are praying for you DAILY! Get better soon. God is able to do more than we could hope or imagine!