Friday, April 16, 2010

Bumps in the Road

Well, it's that time of the month again. Oh come on, don't be skittish -- I know a lot (most?) of you out there know exactly what I'm talking about. You know that feeling of anticipation you get a couple of days before it actually happens, the emotional roller coaster, the counting down of the days until things can be "normal" again, the sudden resurgence of your appetite, and then . . . the moment of truth when suddenly it happens and you immediately have one single, solitary thought that quite frankly cannot be ignored:

I cannot wait to take a REAL SHOWER!

Seriously, guys, what did you think I was talking about? Sheesh . . .

Yep, it's official: I'm stopping IVs today. I got the go ahead from my wonderful doctor yesterday afternoon, and as if that weren't good enough news on its own, I also get to reduce my steroid dose down to 20 mg. I'm pretty sure this means that I'm now heading into the best part of Spring with no needle in my chest, far fewer antibiotic-induced sun issues to worry about, and a drastically reduced probability of severe mood swings. Seriously, who could ask for anything more?

The less good news is that I haven't had any action lately on the transplant front. I feel terrible complaining about that, frankly -- I know I've had more chances in a shorter period of time than a lot of my friends who are, by some measurements, even more in need of lungs -- but I want to be honest with you guys and I think you can handle it. This process is strange and draining, both physically and mentally. Two weeks ago to the day I was in the hospital, about to have my third dry run in less than a 14 day span. When I came home I was hoping for a couple of days "off" to recover and regain strength (again, both mentally and physically), but I was also convinced that the next call would come again quickly. And since then I have literally jumped every time the phone rings (especially the wrong number we got at 12:30 am, which is, I should note, the third such middle of the night scare we've had since this whole process started. Good joke there, universe!). But then the couple of days passed and I was relieved, and then more days passed and I was somewhat surprised, and now a whole lot of days have passed and I am really just kind of confused. Logically I of course know that this is normal, that often quite a bit of time can lapse between workable offers of lungs, but it's still tough to be in such a state of anticipation and then have to try and resume some sort of normal, run-of-the-mill routine.

Luckily, I've had lots of distractions in the form of sunny NYC days, a few amazing nights with friends and family, and even a fairly mischievous shorkie (whose latest antics include devouring an entire "wolf size" bone in a matter of minutes -- keep in mind he is a mix of two lap dog breeds -- and then proceeding to get sick in literally every. single. room. of my apartment). I'm also lucky enough to be feeling better, and to have a rapidly healing wrist that is more or less a normal color again even after all the drama surrounding the arterial line. Sure, it's not the perfect lungs that I had hoped to be breathing with by now, but it is something, and I'll take what I can get at this point.

I guess my main goal right now is just to find peace with this path I've been walking now for the past couple of years, bumps and potholes and steep hills and all. It's amazing to me how much of an emotional journey this transplant process has been so far, because for me that aspect of it all has been at least as difficult as the physical one. And yet, at the same time, it's my physical state that demands most of my time, energy, and attention right now. So it is, as ever, a delicate balance, and one that I've been lucky enough to navigate so far with only a few minor breakdowns. More than anything I've just come to believe that it's not so much the bumps in the road that define the journey, but maybe just the experience of doing the walking.

Walk on, beautiful people.


  1. I had my transplant a year agoin February, and haven't looked back. If you everhave any questions about anything, let me know. I will be happy to share whatever I can.

    You can also read about my experience on my blog, if you haven't seen it yet, it's at:

    It's called Ali's story.

    Best of luck

  2. I look forward to every one of your posts. I cannot wait until we can compare transplant healing stories. Good news is summer is coming. We have a few major holidays coming up when people do stupid things and the innocent person pays. I know this is a terrible way to think but when your life depends on someone else's ending, you need to find a way to be positive about it. I don't wish any ill will to anyone but I want you to get your lungs now! Thinking of you.

  3. woo hoo! no i.v.

    bummer about the dog puke.

  4. Piper- I finally realized that the reason for the delay is that you needed a pair of lungs from someone who not only knew how to jump a horse, but most importantly knew how to properly cross their reins. I know in my gut (and my heart) that's about to happen. Love and best wishes, John Thal