Life is worth it, right?
Being out with friends is worth it, going to see the band play last night was worth it, walking all the way from my TriBeCa apartment to the dogrun in Chelsea this afternoon just because it's cooler and I thought my puppy would have more fun was worth it. Not bothering to check my O2 levels during said walk because it was 70 degrees and sunny and I was out with my puppy along the river and just didn't want to think about CF for a couple of hours was with worth it too. Totally.
So I promised an update after Thursday's clinic appt, and I know it's a little late in coming. There was, to be honest, a lot to digest, and I'll probably be taking a little break from health blogging for a while as I just kind of sort through it all. But for right now I'll give you the bare facts as I know them:
- FEV1 back up somewhat, at least to a level that didn't scare me completely
- IVs until next Friday
- Off work for a while -- have to recover and give my body a chance to get back where it needs to be and . . .
- My doctors, both CF and transplant, feel it's time for me to go active on the transplant list
Yeah, that last one was a little bit of a shock to me too, especially that particular day. I just wasn't expecting it at all, which is a little strange considering a couple of months ago, in January, I was sort of questioning why exactly we weren't moving forward. But right now, I dunno . . . maybe it's because I'm on IVs right now and feeling pretty healthy, but it just kind of came out of nowhere for me.
No wait, scratch that. Out of nowhere would probably imply that I don't get my doctor's reasoning here, which isn't true. I get it. I get that I've been on prednisone at fairly high doses for several months without any sign of being able to successfully wean off it. I get that my BMI is way too low and I'm not really gaining weight. I get that my O2 levels are getting progressively lower, and that the last couple of infections have sent them plummeting into the mid-to-low 80s. I get that a week ago I was in the hospital sating 89 on 5 liters of oxygen. I get that in the past 6 months I've stopped responding to some of my "best" IVs. I get that I had 5 rounds of IVs in 2008. Most of all I get that this is already my third round of IVs in 2009, one of which lasted for 6 weeks, and it's only April. Believe me, dear God believe me . . . I GET IT! I am one sick little cystic, and nothing I do seems to be changing that fact.
But all those things are really only part of the story. The other part is that I still feel happy (most of the time) and I still feel like ME (almost all of the time). I still run, I still leave my house everyday and do pretty much whatever I need to get done, and I still go out and have fun with friends. I don't feel like I can't do those things, at least not when I'm healthy -- which is, admittedly, not nearly often enough, but as soon as I start the IVs I tend to bounce right back. My baseline FEV1 after IVs is higher than the level at which most CFers are even referred for evaluation. Most of all, I'm just stubborn. I don't want to be here, at this point. I want to do something magical and miraculous and suddenly have the infections stop and my FEV1 shoot up to 50% and have everyone stand around laughing and saying "wow, Pipe, you really had us worried there for a second!"
Anyone know how to make that happen? Please?
I don't want to wait so long that one of these infections becomes life threatening. I also don't want to give up on my lungs -- which, despite their CF and their crappy mucus-filled airways, are still after all MY LUNGS -- before I have to. I totally understand that I'm not a black-and-white case, that for some reason my silly brand of CF has taken textbook progression and decided to see it as a challenge to beat, but still . . . I'm only human, and no human particularly wants to have to face these facts, right?
My doctor called me "stoic" about CF -- she said it was easy to get a false sense of security from looking at and talking to me, that you would never guess. She apparently hasn't read this blog ;)
I have some questions. I need some answers. And then I'll make a decision with the help of my amazing medical team (who I trust COMPLETELY) and that decision will be right for me right now. I don't care if that sounds sappy and trite, I'm still stubborn enough to believe that it's true.
Did I mention it's late? Or maybe it's early.