Wednesday, August 18, 2010

Doing the limbo!

I met with the lung transplant doc for a four month follow up visit this week, and no big surprise - it's still too early for me to be considered a candidate. However, if and when, the time may come for me to even be listed, other complications related to scleroderma may hinder this possibility in the future.

I have very mixed feelings about this. Yes, I am happy that I am considered "too healthy" right now, but it doesn't negate the fact that I have a chronic, potentially debilitating illness ticking away inside me. This makes me sad, frustrated, and angry all over again. A perpetual state of "wait and see." Limbo, if you will.

When I first received a diagnosis more than six years ago, the doctors kept confirming I had scleroderma over and over again, but they didn't really offer a solid treatment plan except some medication for the various symptoms. And of course, the wait and see approach.

In frustration, I finally asked one doc in a not-so-quiet voice (OK, I was yelling) "Yes, I know I have scleroderma, but what are you going to do about it?"

Fast forward to the present, and I have these feelings all over again. Yes, I am stable, but I am by no means "cured." I have to take a ton of medications each day, use supplemental oxygen at night and with activity, visit at least one (or maybe more doctors) each month, go to pulmonary rehab twice per week, and worry that I won't be around to see my children grow up to be adults.

I try to live one day at a time, but the time bomb tick, tick, ticks, away in the back of my mind. "When will my lungs finally give up, when will all the meds stop working, what new medical problem will be caused by this horrible disease?"

It's really hard not to have these feelings. It's like when the limbo stick is very close to the ground, and you wonder if you can make it underneath.


  1. I love the limbo reference. Well said!
    Best of luck with everything. I have been told I'm too healthy for stem cell transplant. I know the risks outweight the beneits but I always feel like, "Hey, don't you want to do this when I'm healthy?!"

  2. Reminds of the Chris Rock routine of a guy going blind and asking his doctor for help. "Here's a dog. He'll drag your blind ass around!" Thanks, Doc.

    Medicine is still startling primitive. It seems like the ability to diagnose is getting better but treatment is still hit-or-miss, trial-and-error.

    Hang in there.