Here's The Tricky Part

I made it.

Just got home from my first post-transplant clinic day, and I don't mind telling you all that it was...exhausting? Exhilarating? All of the above?

Okay, let's just go with intense. And new.

The newness of it threw me for a bit of a loop right off the bat, actually. I knew not to take prograf (anti-rejection drug) the morning of clinic before my blood draws, but I immediately got confused on whether I was allowed to eat beforehand, or whether I should take my insulin (sidenote here: I've been on insulin since the transplant to deal with high blood sugars, most likely caused by the high-dose steroids I'm on right now). Figuring better safe than sorry, I held off on everything until after the blood draws, which then left me scrambling for a clean, private place to test my sugars, inject insulin, and then eat a quick breakfast before moving on to my next clinic activity. Turns out I could have eaten in the morning and saved myself the trouble. Whoops. Oh well, did I mention there's a bit of a learning curve here?

Anyway, confusion aside, everything ran pretty smoothly. Col Pres does blood draws (with drug levels), chest x-ray, and then PFTs -- all of which are done on a walk-in basis before you get to your actualy transplant doctor. So since my transplant appt was for 10 AM, I showed up to the hospital at about 8 AM to get the other things out of the way first. I got my blood drawn (veins still bad, but what else is new?), did my x-ray without issue, and then headed over to the PFT lab, where I was lucky enough to meet a woman coming up on her 2 year anniversary of transplant. She and I chatted for a while about everything from time onthe list to transplant recovery to going back to work -- it really is amazing to feel part of the "transplant club" at last! Then I got called back and headed in for my first PFTs with my new lungs, ever.

Now, keep in mind that, as my doctor reminded me, many people haven't even left the hospital by 2 weeks out, much less blown PFTs yet. So this was kind of a test run just to see where we were, and how the new lungs were responding to my cues, etc. Suffice it to say, I was beyond nervous and excited to see how I was doing. And then came the big moment...

45% FEV1.

Wow. I can hardly believe that number, and I keep going back to my PFTs to stare at it. More than that, I can't believe the beautiful arc that my flow chart showed, especially considering that my lungs still feel compressed by my scar and my chest. It was so amazing, so life affirming, to blow that number and know that these PFTs will just keep going up (God willing). Obviously life is about so much more than the numbers, but I have to admit: it feels darn good to get some good ones for once.

Then came clinic itself, and that's where things got a tiny bit more complicated.

First of all, I just want to say that my clinic is amazing. My doctors are fabulous, the coordinators were excellent, and the experience overall was very friendly and reassuring. Everyone told me I looked great, was progressing well, and was doing a good job taking care of my new lungs. My heartrate was a bit high, which tends to be an issue with me, and we are going to try some things to get a better handle on it, including an appointment with a cardiologist at Columbia. I feel better having had the conversation about that, though, so hopefully we're already on track for smoother sailing on that front.

The other issue was that my bronch last Friday showed some A1 level inflammation/rejection, so I have to go on a prednisone burst.

I thought that surely the first time I heard the word "rejection" I would freak out. I thought it would send me into a minor tailspin even though I told myself (and I have been told repeatedly) that some minor acute rejection in the first months is common. I thought that I would have to talk myself down from the ledges.

But I didn't, really.

I'm disappointed, of course. I wish there was zero inflammation issues in my beautiful new lungs. I would love to continue on my gleeful little course of no bacteria and no other problems. But as far as issues go, I also recognize this as treatable, under control, and not a huge catastrophe. I mean sure, I broke out into a sweat when I first heard, and I definitely had (and probably will continue to have) a few moments of "oh wow, really?!" But overall, I'm mostly concerned with the lack of sleep I know is coming from the prednisone taper than I am with whether this will be resolved. I feel entirely confident that I will get through this and that it is not a sign of bad things to come. Maybe it's that 45% holding me up, but I know these lungs and I were meant to be together, and I'm willing to take the bumps in the road, especially considering I have no choice.

I realized today that I have a huge amount of trust in my transplant team -- in their ability, their kindness, and their wisdom. This is huge, and makes, in my opinion, all the difference in the world. I also have an incredible support system in my family, and my mother's strength today was a huge reminder of that. She helped me calm down after the insulin debacle (I was a little stressed at that point, to put it mildly), helped me get from place to place and navigate the maze that is clinic visit #1, and helped take notes through the clinic itself. Now that we're home and watching Wimbleton on TV, she's finally get some well-deserved rest.

I guess the lesson for today is that things don't always go exactly as we plan them, even when we think it's going to be something as easy as clinic. But when the dust settles, hopefully we'll have learned something about ourselves, and maybe even about the people who help us through it all.

And if we have to lose some sleep over it all, well, at least that's another hour in the day to just be grateful.

The Forest for the (PFT)rees

I'm going to be honest with you all: at this point most of my days are fairly routine and -- dare I say it? -- even a little bit boring. I spend a lot of my time doing mundane stuff like treatments and airways clearance and IVs and appointments and exercise. It's a dirty job, as they say, but somebody's gotta do it. And by doing all these things I can at least hold out hope that I'll be the best darn Piper I can be for the rest of the time, when I get to do fun stuff like go to dinner with friends or take a walk with my family or even hit up some of that famous NYC shopping. You know, all those things that make the "boring stuff" worth it?

But some days, rare as they might be, are different. Some days are chock full of excitement and mystery and drama and plotlines that could have been lifted straight from your favorite primetime special. Days like today, for instance.

Today I spent my morning battling pure evil.

Well, okay, maybe not really. In reality I spent my morning blowing my lungs out over and over into this little guy:


...and then trying as hard as I could to figure out the results.

What I learned in the process was this:

1) Not all FEV1 calculations are created equal. I found a variation of up to about 5% depending on which formula I used for the calculation. Not cool. And furthermore, some prodding into the lives of my CF friends (because I apparently know no boundaries when it comes to this sort of thing) revealed that most people have some experience with wildly fluctuating FEV1 percent-predicted numbers, be it between their CF clinic and their transplant clinic, their pediatric clinic and their adult clinic, or (worst case scenario) their same clinic from visit to visit. All because the center is using a different formula, not because of any actual change. This made me think that all this "what percent are you?" nonsense is in fact, well, nonsense.

2) Obsessing over numbers will get you nowhere fast (unless where you're going happens to be your local psych ward). Seriously, I'm not kidding when I say that this little machine and I had a full blown battle this morning, one in which the prize was apparently my sanity. I came out the winner, barely, but it was a super tough fight. Granted, I'm sure there are a lot of CFers out there who can properly handle the responsibility of owning a little toy like this without compromising their mental health; I, quite clearly, am not one of them. Bottom line: while testing your FEV1 at home every so often to make sure you're not slipping into some random spiral of decline might be okay, really you should just trust how you feel. Period. Not seeing that one little number go up when you're working hard might just frustrate you right out of your motivational zone, and seeing the number stay the same even as you start to feel terrible might lead you to put off some much-needed treatment.

[Edit to add: I realize that this changes a bit post-transplant and that tracking numbers becomes super important at that point to catch rejection early. This comment is really only geared toward slightly neurotic pre-transplant CFers like me.]

3) I really hate technology. No, seriously. I really, really, really do. (This one is just personal, and has more to do with the hour it took me to properly set the date on the darn machine before it would even allow me to start destroying my inner peace than it does with the actual destruction of said peace. No, I'm not kidding.)

4) If you think my dislike of technology is ridiculous, you should see how I feel about math. Here's a couple of hints: I was an English major in college, I went to law school, and the one college math class I took -- seriously, the only one -- was "game theory" (aka: math for English majors). Seriously, people, I wasted my morning doing math because of this thing! And that's just inexcusable, end of story.

So cue up the cheesy music and let's end this not-made-for-TV movie right here, because I for one have officially removed the batteries from my FEV1 monitor (and since replacing them would mean resetting the date, I think that means I'm pretty safe). And like all good dramas, I guess this one ends with a lesson, which is don't lose sight of the forest for the trees. Or for the PFTs, for that matter. Because at the end of the day it really is how you feel that makes a difference, and putting too much weight on any one little detail of that is the first step to missing what really matters.

And a PFT ain't nothin' but a number.