What I've Learned (So Far)

Alright, so when we last left off I believe I was on IVs for pseduo and aspergillus, and they had recently discovered mycobacteria in my lungs as well. Of course, a lot has happened in the weeks since then, most of which is far too boring to repeat here -- a fact for which I am eternally grateful. So I'll just stick to the highlights (and lowlights, as the case may be):

-The mycobacteria was identified. I had a CT scan which did, in fact, show a few nodules in my lungs. However, nothing too concerning, so we decided that at this point, it's probably better not to treat the pesky stuff. We're hoping the nodules will disappear on their own (I know many people who have had this happen, so I'm pretty optimistic). My theory is that I will walk through fire, if need be, to keep these lungs healthy, but I also trust my doctors and know that sometimes a nodule is just...well, a nodule. And it's gonna take more than a nodule to bring me down, I promise you all that.

- Unfortunately, the very clinic visit that brought news of the apparently benign nodules, also brought a nasal swab due to a cough/runny nose combo. The nasal swab itself was comical, mostly because my poor doctor clearly doesn't enjoy inflicting discomfort, whereas I have CF and kind of just wanted to take him by the hand and explain that I've had about 600,000 of these things in my nearly 29 years on this earth and really just don't care. Luckily we got through it together (classic doctor/patient teamwork on that one), but unluckily the result showed parainfluenza -- a pretty common virus that tends to cause the common cold, but in transplant patients can be far more complicated. So I got to add an oral antiviral to my 3 oral antibiotics, 1 oral antifungal, 2 nebulized antibiotic/antifungal meds, and three IVs.

-On the plus side, even that didn't stop me from sharing a fantastic weekend with my beautiful cousin Gloria, who came to visit and enjoy everything from Dylan's Candy Bar here in NYC t0 a Broadway show. Really, is there anything better than family? On top of that, Gloria and her husband and 4 beautiful kids have participated in TONS of CF fundraising and activities this year. They have been an incredible support for me and the members of my immediate family (as have all my extended family members) and they deserve special recognition for the kindness and love they spread like wildfire everywhere they go. I am blessed beyond measure by my family, and I can't say it enough.

-I eventually came off theses drugs, and one-by-one they started dropping like flies. Seriously, is there any better feeling than tossing that empty prescription bottle? Or pulling that IV needle out of your port and jumping in a hot shower? Answer: yes. The better feeling is getting your energy back, feeling on top of the world again, and being able to eat everything in sight. That, my friends, is pretty indescribable.

-But sometimes even hard-won victories are short-lived. Which is why, today, I had a repeat bronch to make sure all the bacteria were gone. And unfortunately, they are not. There is a LOT less of them, which is awesome, but in the world of pseudomonas and new lungs, better is rarely good enough. All of which means that I will be restarting IVs this week, though hopefully on a much smaller scale. I'm just waiting to hear from the doctor about what drugs we're going to use and for how long. The silver lining is that we're on the right track, and the nodules (while still there) have yet to cause any issues.

My doctor did say that this sort of infection cycle is not uncommon in CFers immediately post-transplant. He isn't concerned, which gives me a lot of confidence, and he thinks that we just have to get over these humps to get to the other side. I may have mentioned before that I think I have a fantastic transplant team, and I trust them wholeheartedly to wipe out whatever is growing in there. Plus I'm pretty sure this psuedo wasn't counting on my total determination to kick its butt when it decided to attack my lungs. Bad move, bacteria. Better luck next time.

But the most important event of these past few weeks can't really be captured in a bullet point. Basically, this whole roller coaster of up and down and infection and meds and viruses and life and everything in between forced me to somehow reexamine what I thought transplant would be like. I know it sounds weird that I'm almost 5 months post-transplant and talking about my expectations for life after surgery (guess I'm a bit of a slow learner!), but the truth is I think it's taken me this long to even wrap my head around what has happened to my body. Around all that I've won and all that I've lost. Around all the blessings and all the challenges. Around the partnership between me and the wonderful Donor Bob. Around...life?

The fact of the matter is that transplant isn't perfect. There, I said it. And I mean it. More and more I'm learning that transplant is a mixed bag -- a lot of very wonderful things and a lot of annoying, sad, or downright scary things. Which is okay, really, because what thing in life doesn't come with a few kinks in the line? What experience worth having has ever been super easy? So while sometimes (like now, when I've been fighting pseudo for over a month), I still feel more or less like I did when I had CF lungs, there are other days when I feel like I could literally climb Everest if I had a warm enough jacket. And somehow that works for me. That balance, imperfect as it might be, is really all I need. I'm pretty sure perfection wouldn't suit me very well anyway. That said, I'm willing to try it if I get the chance (hint, hint, right God?).

The thing about where my life is now, in my opinion, is that it's really...well...normal. It's pretty run of the mill in a lot of ways. True, most people aren't immuno-suppressed. They can order raw fish in restaurants and they can go to crowded concerts without a thought. They also probably didn't have a bronch today, just as they probably won't have one ever, and they aren't breathing with someone else's lungs. They might have never been on IV antibiotics and they don't spend much time in hospitals if they're lucky. So when I say my life is "normal", rest assured that I don't mean that my life is the same as your typical 28-year-old's. It's not.

But it is similar to other people's lives in the sense that everyone faces this kind of thing, albeit on varying scales. Everyone goes through highs and lows, and everyone has disappointments and struggles. The more I live with these new lungs, the more blessed I feel to know that my story, in many ways, is pretty much what we call life. It's comforting to know that although our stories are uniquely ours, they are also, in many ways, one and the same. I'm not going to claim that I'm perfect at remembering that all the time, but I am getting better, and that's one lesson I'm insanely grateful to have had these extra 5 months to learn.

None of which is to say it's not frustrating to have to restart IVs, or go to a last-minute bronch, or deal with scheduling snafus or waiting rooms or whatever other challenges life decides to throw at you. These things are annoying, and frankly I think it's okay to react to them -- up to a point. But in the end I might venture to say that maybe these challenges help keep life interesting, and even more importantly: maybe they're not any better or any worse than what anyone else is going through. Maybe we can learn how to feel our own pain and summit our own mountains without comparing them to the hurt or the obstacles faced by others, and while still supporting others in their climbs. And maybe the best thing we can all do to honor our collective struggle is to trust that together, we'll probably make it through. Or at the very least, have a whole lot of fun trying.

And at the end of the day, there is in fact an "I" in "community", but it's only one letter out of many.

With love and light.

Winding Road

I had a conversation with a friend the other day that went more or less like this:

Friend: So do you still run your blog now that you've had your transplant?
Piper: Yeah, but I'm starting to feel like a bit of a sham, you know, because I just don't feel like I have a lot to write about these days on the health front. Not that I'm complaining, but I'm a health blogger who is, well . . . healthy (relatively speaking, of course). Where's the fun in that?
**Cue loud barking by Sammy apropos of absolutely nothing**
Friend: Well, your dog's pretty crazy. Maybe you could blog about him if you run out of health stuff?

Just a warning, by the way: This blog is NOT going to be about my dog.

I had a bronchoscopy yesterday as part of my 3 1/2 month post-transplant work up. For those of you who might not understand what this means, the short description is that they sedate you heavily with fentynal and versed and then stick a probe down your mouth or nose into your lungs. Once down there they do fun things like check out your lungs with a camera, remove bacteria for cultures, and (if you're really, really lucky) pull off pieces of your lung to send for biopsy. Good times, right? Although to be fair, it's not that unpleasant of a procedure overall. I had one of these things pre-transplant to re-inflate a collapsed lung and have had several post (for over 2 months I was having them weekly), and frankly the biggest problem I've had so far is that I apparently don't do sedation -- at all. By which I mean they have to give me roughly the amount of sedatives they would normally give a 300lbs man, and even then I stay awake through the whole thing. But even that doesn't really bother me much. I guess I just really trust my doctor.

So anyway, yesterday's bronch really wasn't that big of a deal, in theory. (Other than the fact that my port is no longer accessed, that is, which meant that I had to get a peripheral IV. To the nurse's credit, it only took her a few tries.) I checked in, did the normal workup, and headed back to get my drug on, so to speak. The plan was a quick nap, wake up in recovery, then go home and get some well-deserved lunch.

Ever notice how things rarely go according to plan?

Here's what I know:

1) Despite the fact that I'm still on vfend and abelcet since my transplant, I now have additional aspergillus growth. In other words: more IVs. I get 4 weeks of mycofungin starting as soon as they come to access my port. The good news is I got a full 3 weeks off. Just off the top of my head I can't honestly remember when the last time I had such a long break was. How's that for a bright side?

2) Something happened during or after the bonch that made me, well . . . the nice way to put it would be "sick." The not-so-nice way to put it would be "what the hell?!" Seriously, the combo of fevers/vomiting/chills/etc and bronch sedation is not, shall we say, a particularly fun one. Let me put it this way: I'm used to being able to kind of "take charge" when I'm sick, particularly if someone like my mom isn't around. I can be wracked with fevers and having a near-death experience, and most likely I'm still going to be calling the shots and ordering people around. Unfortunately, post-bronch I can't really do any of that. Normally I go home and sleep for about 6-8 hours after those suckers, so clearly I wasn't in much of a state to make coherent decisions. On top of that, there was absolutely nothing anyone could do to "cure" the problem. I did have the presence of mind to contact my doctor, who had me keep an eye on things and was able to check back in on me today, but beyond that it was either go to the ER and wait it out there or just suffer at home. And of course I think almost any sane person would choose home over ER. And so I waited, and in the meantime kept drifting in and out of consciousness because of the sedation, which of course made the fever seem even scarier for those on the outside. Did I mention that this is not such a good combo? Every time I tried to rally long enough to explain what was happening I got blank stares, probably because for all I know I wasn't even forming a coherent sentence. All of which, I maintain, was not my fault.

Ending hatred, securing world peace, and curing all diseases known to man? Sure, why not -- anything's possible.

Functioning like a normal human being after essentially having been given elephant tranquilizers for breakfast? Not gonna happen. Period.

3) I'm still waiting for the rest of my results from the bronch and for whatever comes next. That's about it from the health front, so please just send some good thoughts/prayers/positivity up into the universe for me, and for all of us, whenever you get the chance.

4) Despite the fact that I promised this blog would not be about Sampson, I did notice yesterday during my random return to the land of the sick that his mood is 100% different when I'm under the weather. Among several weird behaviors, he began pulling all his toys 1 by 1 out of his toy box, a habit I remember from my pre-tx days but which I had more or less forgotten. He does this for comfort, I think, or to let out aggression, or perhaps even for attention. Maybe all of the above. But he does do it, and he also gets incredibly nervous as soon as I start acting "sick" again. Poor puppy. He's a good little guy, for all his crazy nonsense.

I guess in the grand scheme of things my life is still pretty "boring." I'm learning French, speaking to groups of med students, playing with my puppy, going to the New Yorker Festival (among other amazing things, I saw one of my favorite authors, Mary Karr, speak on Friday night), meeting new friends, and doing gyrotonics. And I guess above all I'm grateful that last night was such a big deal, because the fact of the matter is that I still remember a time when it wouldn't have been a big deal at all. And considering that such a time was really only 3 months ago, I have to say that I think I've come a long way, baby. I've just got a long way left to go, I guess.

But I'll get there.

La Vita e Bella

Okay, so in case you missed it (which is unlikely, since I've been practically shouting it from the rooftops for a while now), I came HOME with my brand new lungs on Thursday! I can't even describe the emotions that hit me as I stepped off the elevator and into my apartment hallway. The door was decorated with welcome home banners and a special sign from my beloved Godmother, and awaiting me on the other side were my puppy, a hot shower, and an amazing meal surrounded by loved ones.

I just don't think it gets any better than that.

Except that it does get better apparently. It gets better almost daily, and I feel it getting better as the pain issues and tense muscles subside, as I gradually gain strength to the point where short walks around the apartment or outside or even the hospital (yes, the hospital, more on that in a second) don't seem so daunting or draining, and as I recenter myself to the reality that I made it, am home, and have officially received my double-lung transplant. It gets better with each breath into my peak flow that shows an improvement, and with each night that I gradually come back to my normal resting schedule. It just keeps getting better, and after months where everything seemed to be getting worse and worse, I can't even begin to explain how amazing that feels.

Yesterday I actually ended up going back up to Col Pres for an outpatient bronch. This was the plan from the get-go, so please don't worry. My bronch from Wednesday showed just a small area of unresolved mucus, and we're monitoring it closely and even went ahead with a biopsy just to rule out every possibility, but the bottom line is that I feel good. I feel secure in the amazing hands of my lung transplant team, who so far has inspired nothing but confidence and a great deal of respect on my part for all the members. I feel secure in my new lungs, beautiful and healthy, as they continue to carry me through. I feel, as always, secure in my faith and in God. I feel secure in the capable hands of my parents and loved ones, who are helping to guide my still somewhat fuzzy head through this maze of new medications and protocols. To contrast this feeling of security with the fear and confusion I felt even a few weeks ago waiting for lungs seems totally mind-blowing. Not to mention spirit-saving.

I realized yesterday morning that I'm dreaming again. Not in the sleepy sense (although I will admit to having some pretty trippy transplant dreams -- pain meds, perhaps?), but rather in the futuristic one. I have spent more time in the past week thinking about where I'm going from here than I did probably all of last year. I have dared to allow myself the audacity of making some plans in my head, the madness of considering possibilities, and the joy of even believing that I might be able to make it all happen. It's an incredible feeling.

I once had a doctor compare new lungs to a butterfly's wings. The lungs take time, he explained, to fully reopen and inflate, much as a butterfly newly transformed takes time to dry out and stretch his wings before he can fly. It's a delicate and gentle and miraculous unfolding, and one I felt privileged to feel in my own chest when I later recalled his words.

But it's more than my chest, because I feel the unfolding in my entire self. My mind, spirit, and soul are also testing out their new wings, flexing them gently, stretching them out little by little to encompass all the hopes and dreams of the 28-year-old young woman who tentatively put many of them on ice a little over a year ago. Well, guess what, world? I'm baaaaaack.

I have had so many people -- from family members to the doormen at my apartment building -- stop me to marvel at the new way I look. Their comments are normally along the lines of 1 of 2 major observations: 1) my color is amazing (for some reason this is always the word of choice -- "amazing"), and 2) I look happy. I take both of these as major compliments, although I know that neither of them is about ME, per se. I am colorful because I am blessed, because a beautiful man and his family were generous enough to give an ultimate gift, and because there is life and breath, literally, in my veins. I am happy because I am blessed, because I am surrounded by love, because I have been given a gift so precious it seems unbelievable even as it seems completely meant to be.

I am colorful. I am happy. I am so. unbelievably. grateful.

Yesterday I wrote about remembering some of the harder aspects of CF. Today I reiterate that cry, but ask also that we each take a second, a few deep breaths, to recognize the sheer beauty of it all. And if Sarah, gorgeous soul that she is, can write this post about her precious son, well, I feel we can all take the lesson in that to be truly grateful for the life we have.

Life is not predictable. It is not always fair. It is not always perfect.

But it is always beautiful.