Our Little Monster

Got my biopsy results today.

I have what my transplant clinic described as "minor inflammation," which could be caused either by "true" rejection or just kind of brought on by the other part of the news, which is that my goo culture from the other day grew out our old friend pseudomonas. Talk about a party crasher. Anyway, the combined effects of these results is more IVs (polymyxin and aztreonam) for 3 weeks and a 2 week taper of prednisone until I get back to my maintenance dose of 10mg.

Luckily, the pseudo is just hanging out in my airway -- a sign that once again this is all about the sinuses and much less so about the lungs. Unfortunately, the added rejection/inflammation (it's been labeled as A1 rejection) means that I have to postpone my sinus surgery for 4-6 weeks to give my system some time to reset itself and avoid extre infection risk. And I also have to get another bronch in 3 weeks, which obviously isn't the best news in the entire world, though honestly they feel like old hat now. I think a part of me feels weird whenever I'm not on versed after the past year.

My general sense right now is that things, quite honestly, could be worse. Not sure if that's just because I have so many friends who actually are doing worse than I am, or whether it has more to do with the fact that actually facing up to the past year would involve going somewhere I just don't want to go right now. I think it's the former. Weirdly, the one emotion I don't feel right now is fear. I feel anxious to get to the other side of this bridge, impatient, frustrated, hungry (thanks, prednisone!), kinda whiny, and a little overwhelmed. But I don't feel scared. Somehow or another the last couple of years of living in constant infection have coupled with 29 1/2 years of life with cystic fibrosis to make me much more prone to sarcasm and humor in the face of illness than tears or nervous worrying. And I still haven't figured out if this is a good thing (because it keeps me sane and productive) or a bad thing (because it inhibits me from taking things seriously), but I can tell you without question that it is, for better or for worse, a Piper thing. I have the feeling it might be kinda rampant in the CF community in general, to tell you the truth.

At any rate I'm still at home vs. the hospital, I'm still confident that my doctor knows what he's doing, and I'm still at least somewhat on this side of the whole "not crazy" spectrum -- though that last one might well change after a couple days on high dose steroids, believe me. And for all of those things I remain, for now and for always, extremely grateful.

For all those other things, though, I'm not grateful at all, which is why I wrote a simple (and uncharacteristically "R" rated for my normal internet chatter) status update on Facebook this afternoon:

dear CF: fuck off, you little monster. thanks.

That one little sentiment got more "likes" more quickly than anything else I've posted on there. Ever. Which means that to anyone who has ever wanted to scream, cry, kick CF where the sun don't shine, and then run away laughing: don't worry. You have no idea just how not alone in that you are.

Much love and happy hunting to you all, my beautiful fellow monster fighters.

Oh-bla-di, Oh-bla-da

Well, the past couple of weeks have been, um, shall we say intense? But largely in a good way, so it's hard to complain too much. I feel bad for not having kept up more diligently with the blog -- and was seriously touched beyond words by all your lovely messages of concern and love -- but I needed to take just a little time for myself, to watch this new world continue to unfold around me and to figure out, as well as any one ever can, I guess, my continued place in this amazing thing called life.

I will say that the learning curve on all of this new stuff -- on transplant and diabetes and new medications and just relearning my own body -- is steep, to put it mildly. So much of this is just plain new, and while new can be exciting and fun and wonderful, it can also be confusing and even (dare I write this?) downright hard. Is that okay to admit to you all? Does it cast me in the light of ungrateful patient or whiny survivor? Do I give myself away by acknowledging that even life with new lungs isn't always perfect?

The past couple weeks have seen some amazing changes, many of them nothing short of miraculous. My lung function shot up 10 points to about 56% FEV1, numbers I couldn't have even imagined for years pre-transplant. I got my staples removed and my scars are pretty much healed, freeing me up to move more, sleep in new positions, and just generally enjoy a whole new level of comfort. Everyday activities are no longer exhausting -- who would have thought the grocery store could be a fun place to be, honestly? I feel good, and my entire family is looking ahead to a time in the not-so-distant future when perhaps my mom can return to her home and her husband and her puppies, and I can return to an independent and, well, somewhat "normal" life. I'm off several of my meds now, and the hardcore CF routine is a thing of the seemingly distant past. And there are many moments -- more of them each day than I can count, really -- when I simply have to smile and reflect on how unbelievable this wonderful transformation is, and how blessed I am to have been chosen to receive this gift, not to mention this amazing level of care and support from friends, family, and doctors alike. It's way more than any one person deserves, and I try hard to never lose sight of that simple but overwhelming fact.

And yet, for all the beauty of this time, it has also been a period of extreme adjustment. My egotistical side has long prided itself on taking things -- particularly medical things -- in stride and without too much drama (although I should probably admit here that this wasn't always the case -- my teenage years were definitely marked by a certain melodramatic flair when it came to all things CF). Partially collapsed lungs, constant infections, weird port drama, hospitalizations, surgeries, struggles to gain weight, antibiotic reactions, hearing loss -- I've been there, done that, survived, and maybe even been able to laugh about it all along the way. Because after all, no one knows slightly morbid, comedy-of-errors style humor better than the professional patient, right?

So why, I wonder, is the sudden combo of a few (okay, fine, a LOT of) new pills, some extra medical appointments, a few new IVs, and (most recently) an increased load of steroids to deal with some minor acute rejection throwing me for such a loop? Is it the combination of being somehow both healthier and more fragile than I was during my hardcore CF life? Is it the shift in identity that seems to come with the move from CF patient to transplant patient? The sudden realization that I'm not at all sure what to expect from this "new" body that is both wholly myself and utterly foreign all at the same time? The always somewhat jarring change from one medical team to another, no matter how competent and lovely that new group of dedicated professionals might be? The frustration of being unable to jump headfirst back into the "healthy" life I so long imagined would magically reappear with a 6-hour surgery followed by a short and uneventful recovery period? Or maybe just the realization that things are unalterably different now, for better or for worse (or, more honestly, for better AND for worse) -- for the rest of my life. Which is, as I mentioned before, both wonderful and, quite frankly, scary as all get out.

So maybe I am a little more whiny than usual these days. Maybe I haven't been on the top of my game in terms of taking everything in stride and cutting both myself and others slack where it needs to be cut. I think in all honesty I'm trying to be something amazing, somehow trying to prove to myself and to everyone else that I was worth this miracle and that I can handle everything like some kind of smiling transplant poster child, and the truth is that I'm really not succeeding in much besides maybe driving myself even crazier than normal. So, okay, I've still got a little learning left to do. Guess I haven't reached the top of that curve yet, and to be honest I probably never will.

But the fact of the matter is I am making progress. I am, for all my flaws and my frustrations and the fact that I'm fairly certain some of the people in my life would tell you that I've lost my mind, actually doing something right. And sure, I may not be winning any awards for transplant superstar at this moment, but I guess that's not really the point anyway. Because my illness has never been the defining aspect of my life, and I'm not going to let it become so now -- hard as it is to remember sometimes.

So here's to the changes, the good and the bad, and here's to emotions from happy to sad. It's real and it's lovely, and just like the song: it is all well and good and, of course, life goes on.

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.