Wednesday, June 12, 2013


Today marks 3 years from the day my beloved Donor Bob gave me the gift of life in the form of his precious lungs. It marks 3 years of all sorts of wonderful, from turning 30 to watching my sister come into her own as a fabulous designer; from meeting the children of some of my best friends to meeting someone absolutely amazing in every way. It marks 3 years of breathing, celebrating, and LIVING (with all the awesome ups and downs that word entails) and it marks 3 years of continued involvement in the quest to find a CURE for this little monster -- for all of us. The past 3 years have been hectic, amazing, scary, irresistible, indescribable, and -- above all -- beautiful. Every breath is a reminder of the gift I've been given, of the power we all have as humans to make a positive difference, and of the fact that too many out there still struggle for air. It is a lesson I learn and relearn daily, all because of an unknown stranger who had the grace to teach it me as his last act on earth.

And I am grateful.

Today also marks about 6 months since my PFTs began declining. So far, despite multiple treatments, IVs, bronchs, CT scans, and other fun procedures, we have yet to stabilize the numbers to my doctor's liking. So today now marks 2 days since I met with the doctors at a different, affiliated hospital to (re)start photopheresis, a blood treatment that may help stabilize my numbers by confusing the heck out of my immune system, for lack of a better description. (For those of you who like details, check out this post on the ins and outs of photo -- with pictures! -- for more information.) In addition, we're going to add a fourth immunsuppressant drug to my daily routine (this in addition to the prograf, cellcept, and prednisone I'm currently taking), and run some additional tests for other causes of lung damage such as reflux. Pending results on those treatment options, we'll make some tough decisions, but the end goal is get Donor Bob to stick around for as long as possible. What can I say but that after 3 years, I've become pretty attached to him.

And still I am grateful.

I'm grateful because today I got to take a jog/walk down to my old apartment, the one I lived in right after I left the Upper West Side. This was the apartment I lived in when I was lawyer, when I was first told I needed a transplant, when I got evaluated, when I started this blog, and when I first met Mr. Sampson Bear. It was also an apartment I lived in when I was sick. Like really sick. I stood out front of it today, in my running clothes, and I breathed. I breathed because I still have breath to do it. I breathed because Donor Bob, however down, is not yet out. I breathed because together we are still standing, we are still moving forward. And I breathed because it never hurts to take a moment to look back on where you came from -- even when you're not sure where you're going.

And then I turned around and went home. Round trip, it was exactly 3 miles.



  1. That's three miles more than I ran today, and one mile more than I was able to run yesterday. You go girl! Love you the positive energy you send out into the world. We're hoping to come visit in the spring, so know that we're sending lots and lots of healing love and light so that you can be ready for some wild and crazy Ruffs.

  2. Thinking of you and praying that the photopheresis fun helps.

  3. Love you and Donor Bob!! And how I remember that apartment with the t-shirts all over the floor!! Happy 3rd birthday to donor Bob's lungs!! XOXO, Your Loving Godmother

  4. I keep you in my prayers and thank you for reminding us all to be grateful no matter what circumstances we are in.