Tuesday, October 5, 2010

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.


  1. Sorry Piper about the iv meds, but what choice do we have. I've been on Vfend and Micafungin since my transplant too. I'm finally coming off the ivs this week, woo hoo! I was feeling like I still had my cf lungs because of still being on ivs after transplant. We are supposed to be "normal" after tx with no more ivs and breathing treatments, right? But I tell myself at least I can BREATHE! Lots Of Love!

  2. So glad to hear about how well you're doing!! I can't wait to be able to do something outside of the house every night of the weekend and not pay for it with an admit or home ivs. Oh, the little things. That's interesting about the aspergillus... do they know how it got in the new lungs? My biggest fear is MRSA getting into my new lungs. I don't know if it's in my sinuses, but I assume that it is. I know not to have expectations, but I would be bummed if I had to do more IVs post-tx than I'm doing now. I'm finishing up 3 weeks tonight (2 in hole) of IVs but my last stint was in May, which is unusually good for me. I really am excited to breathe, though. I think I will be okay with whatever else comes along with that gift. You're awesome, keep blogging, I love to read about your journey, even if it is Sammy-centric now days! :P xoxo

  3. i just want to make an argument for why in my humble opinion you absolutely should not feel like a sham writing as a health blogger and i would personally like to VERY much encourage you to keep writing. in fact, i'd argue your voice is possibly even more important now than ever.

    1) you now have 2 chronic illnesses, CF and being post-transplant, whereas before you only had 1. just saying...

    2) there are lots of CF bloggers out there saying important things that resonate with lots of people and i don't mean to demean these efforts by any means. however, often when people get transplants, they become more mobile, active and healthy, thereby decreasing their blogging activity. this is completely understandable and amazing and a major point of the transplant, i know, but the "CF underground" needs the voice of post-transplant CFers like you! your wisdom and advise are absolutely invaluable to us and you can offer support unlike anyone else when we too (eventually) find ourselves at the rock bottom of our disease. you're the only ones that really know what it is like and that is truly precious.

    3) you state that your blog is about your journey with CF and transplant. the journey obviously consists of the decision to get a transplant, the evaluation, the agonizing wait, and the actual transplant. BUT, i think a huge part of the journey must also be the post-transplant period where you're redefining yourself and your life with lungs that actually work properly. not only that, but you're learning how to live with another chronic disease that requires a whole new set of skills. to stop blogging now would be like calling it quits when you receive your hard-earned graduate degree and never putting it to use!

    4) a blogging world without a matter of life and breath is just depressing. we love you and we NEED you to keep writing. we love celebrating your newfound health. we love hearing about all the new things you can explore and do and enjoy. we're breath-heads for good reason and we'd be beyond depressed in a blogging world without you.

    i will come right out and admit that most of these reasons are pretty selfish.... but i just want to voice my opinions and present you with my argument for why you're, more than ever, the "real deal" as a health blogger. if continuing to blog means health stories interwoven with sampson stories or anything else you want to share with us, well, i'll continue to keep signing myself right up! after all, isn't it still a matter of life and breath?