Okay, seriously, I think something out there is mocking me for complaining about not really having much to write about on the CF/transplant front lately. And when I say "mocking," what I really mean is "trying to drive me insane." Because there has been A LOT going on here in the past couple of days. And while it's mostly not what I would call particularly good news, it has served as a much-needed reminder of all I have to be grateful for, and everything I've gained since June. Which is, you know, never such a bad thing to be reminded of when you get right down to it. On the other hand, I think I've learned my lesson now.
Can we go back to boring, please? I promise I'll be good and not complain. Honest.
The first thing that happened, as you may or may not know from the blog, is that I had a bronch and got a little sick. That, in and of itself, is neither uncommon nor a particularly bad sign. Most likely it was more a reaction to the sedation anyway, and not any sort of indicator of overall health. Because the fact of the matter is I feel more or less fine, and I certainly felt great going into the bronch. If anything I've been living life a little too much lately (wait, is that even possible? But I know you guys understand what I mean). It just feels beyond amazing to be able to breathe, to have the freedom and the energy and the time to go where I want and do what I want and come home and not be run ragged. I can't even explain it. And that is definitely blessing number 1, since we're counting and all.
But anyway, I got a little sick (okay, fine, it was a lot sick - only it was for like 2 days instead of weeks, which is the big difference between now and before if you ask me), and then I got better. And then we found out that I had pseudo and aspergillus growing in my lungs - most likely stowaways from my CF lungs that had been hanging out in my sinuses and main airway, both of which still have CF of course - and we started treating those with IVs and nebs and orals, just to be safe. Which, of course, was all well and good especially for those of us in the "better safe than sorry because I no longer have an immune system to speak of because I (heart) my lungs and want to keep them" camp. Basically I was grateful to have treatment options, grateful to be able to do things from home instead of in the hospital, and grateful to have had 3 weeks off of IVs from Sept until October. All was right with the world.
A couple of days ago, my doctor called to tell me I had a new pathogen in my lungs - one not there (to any of our knowledge) before my surgery. This new bug is called Steno Malt, and interestingly enough another of my CF friends had recently cultured it as well. (Interjection: not only is this bug not passed person-to-person, but this friend lives out of state and I haven't seen her since my transplant, nor have we exchanged anything by mail. So unless the bug jumped out at me through her FB page, I'm guessing this isn't a cross-contamination issue. If bugs are spread via FB, on the other hand, the CF community is, in a word, screwed. Talk about giving new meaning to the term computer "virus.") Okay so fine, I have Steno Malt. The good news is that with my new lungs not having CF nothing is likely to colonize in there. So we discussed treatment plans, added some antibiotics, and I went on my way. No used crying over, um...spilled (Steno) Malt?
Fast forward to today, when I got yet another call from my doctor. Yeah, that's right, here we go again. Only this time it was a little weirder and little more creepy, to be honest. Apparently I have a mycobacterium in my lungs. No word yet as to which - only that it is NOT tuberculosis and NOT mycobacterium avium complex (MAC). I guess that means it may be abcesses, but again - we're just not sure. I am going to take the cautious route and have a CT to check for any possible nodules, which can be a byproduct of these bacterium and can, so I understand, cause all sorts of problems. Depending on the results of that, and the culture when it finally grows out, we'll devise a treatment plan (if any). In the meantime, I figure I can only make the situation worse by freaking out. Many of these myco strains aren't even really issues, and again, it's unlikely to colonize at this point from my understanding. Also, I can't stress enough that I don't appear to have an active infection right now. I'm feeling pretty good (tired from the drugs, but good), and my PFTs are totally stable. I'm so so grateful for that - and for the fact that my new lungs are still holding up beautifully despite this onslaught. Sorry, CF, you're gonna have to take your reign of terror elsewhere, because I'm not buying it. Welcome to blessing number 2.
I kind of feel peaceful about the whole thing, or as peaceful as it's possible to feel while still being (admittedly) a little freaked out. I have an entire team of great doctors who seem to be all over this - I even ran into my CF doctor yesterday and she's being consulted as well. Nothing makes me feel more secure than knowing that they have a plan (even if that plan is to do some tests and see...or even just wait) and that they're communicating that plan to me. The fact of the matter is that I trust them. A lot. And I feel very well taken care of, much as I may joke about them being hyper-vigilant. So right there: blessing number 3.
And finally, I realized at about 12:30 am this morning that yesterday, October 12th, was my 4 month transplant anniversary. Has it really been that long? And at the same time, has it really ONLY been 4 months? Wow. At first I felt a little sad that I had let the day pass without a celebration, to be honest. I mean, not that I need a reason to put on a fun dress and indulge in some really yummy food, but it's always exciting to have a special occasion, right? And then I realized that I hadn't noticed because I was too, well...busy? Happy? Not sitting around thinking about being "sick," even in the midst of all this madness? And that, friends, gave me more cause fr celebration than anything. I actually laughed out loud. To actually have a transplant anniversary is an amazing gift. To have a life so fun that you can actually forget about that amazing gift, if only for a short while, is, in a word: indescribable. Not that I would ever want to stop acknowledging and being grateful, but to have the chance to live so hard that I don't even think about my lungs? I honestly never thought I would type those words. Blessing number 4, and 5, and infinity. That one counts for everything.
Oh, and thank you, donor Bob. We make an exceptional team. (PS: Sorry about the pseudo, and the steno, and the myco. Wish I could make these silly bugs leave OUR lungs alone!)
So yes, I've learned my lesson. I'm back to counting my blessings out loud, which always seems to help when I feel a little overwhelmed, and to be honest I keep coming out ahead in my tally. I know how lucky I am to be able to look at this as a "rough patch" rather than the rest of my life. I know how precious and fragile this gift is - how much it is meant to be loved and enjoyed and cherished for exactly what it is...not a cure or a rebirth so much as a beautiful awakening. I know that God has given me this peace for a reason and that I should trust. Mostly I just know that I'm happy and busy right now, and so far it doesn't seem like the pseudo or the myco or anything else has been able to take that away from me.
I also know that CF sucks. You know, just sayin'.
Hopefully I'm well on my way to getting back to boring. In the meantime, I'll just try and enjoy the ride as much as possible. And hopefully I'll keep on forgetting what day it is, even as I try to always remember to be grateful for each and every one.
**PS: Please take a second if you haven't already to check out the links on CF/transplant over on my sidebar. I recently added two amazing blogs (A Breath of Fresh Air and Seven Stars) by two wonderful women with CF who also happen to be personal friends and role models of mine. Everyone else on there is great too, and please send me an email if you'd like your blog on the list. I'd love to check it out.**
About Me
- Piper
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
Wednesday, October 13, 2010
Wednesday, October 6, 2010
Perfect (Kind Of)
Wow. Okay, so where to begin? For lack of a better intro, I'm just going to start with the important stuff:
I've been really, really sick.
Seriously, when I say "sick" this time, I really mean sick. As in, unbelievable-grossness-meets-super-sedated type sick. Or like...well, like CF sick, really, so I'm sure a lot of you out there know what I'm talking about. The high fevers, vomiting, lack of appetite, high heartrate, low O2, would-get-scared-but-any-emotion-just-serves-to-make-my-headache-worse kind of sick that no one ever really wants to go through. And I have to be honest, it wasn't particularly pretty. And of course it was compounded by the ever-amusing (except when they're not, in which case they are really, really NOT -- trust me on this one) effects of sedation. Wow. Good times to say the least. I think the only thing more fun than being hunched over the toilet while running a fever is being in that position and then looking around and not knowing exactly where you are or how you got there. Yeah, it was just that amazing.
That said, I survived. Thanks to the help of some very wonderful friends willing to put up with my randomly spouting nonsense due to the drugs and, of course, the passing of our good friend time, I was pretty much back to "normal" within 24-48 hours. Of course, the definition of "normal" right now for me includes both an aspergillus (fungal) infection and a pseudomonas (bacterial) infection. So no change to the plan, as I'm still doing the IVs, but now I get three drugs instead of one. Oh well. I'm kinda of the mindset that once you're on it really doesn't much matter -- might as well load the suckers up and wipe out everything at once, right? And the best news I got today (which is also, come to think of it, pretty much the best news possible...ever) is that the results from my biopsy are back and there is NO rejection. Question: is it weird that I feel an odd sense of victory over my own immune system? Not sure if that makes me the winner or the loser, honestly, but it means I get to keep breathing, so I'll take it.
As we used to say in college: major score, baby. (Which statement, by the way, has the unfortunate side effect of making my college friends and I look bad. We weren't normally this uncool. I promise. Kind of.)
Okay, so all that aside: the fact remains that for the past two nights there has been a sick presence in my apartment. On Monday night, without question, I took the grand prize. On Tuesday night, however, things got a little murkier.
The short story is that Sampson got the hiccups. I'm not entirely sure how it happened, though I think it was brought on by literally inhaling two organic mini milk bones. I'm pretty sure those things are just expensive crack for dogs, because Sam goes at them like a deprived junkie every time I head toward the treat closet. Which, to be fair to me, is less a "treat closet" than a "treat shelf" -- my dog is not spoiled enough to have his own closet, though I readily admit that the distinction is a fine one.
The larger point here is that, having acquired the hiccups, Sampson went what could maybe be politely termed "crazy." There are less polite terms, but I'm not going to mention them here, because they'll make my dog look like some sort of Dr. Jekyll and Mr. (Raw)Hyde. Suffice it to say that this was not good. In his panic, Sampson began by jerking around in a pretty solid imitation of a seizure, or an electroshock therapy patient -- by which I mean all-out, on-the-floor style convulsions. And, to be perfectly honest, he does this sometimes. (Yes, I'm aware that I am indicting myself for possible puppy neglect here, but it has, as a matter of fact happened before. My mom has even seen it. In my defense, the vet has declared him seizure free.) So I sort of wait the convulsions out, at which point he starts tearing around the apartment like a madman. And that's impressive, since the entire apartment is only three rooms and has hardwood floors. I swear that dog hit so many walls that if he wasn't prone to seizures before, he may be now. After which mad dash he ended up in the bathroom, he grabbed his bone for some hardcore gnawing, then ended up in my bathroom "digging" his way through the bathmat, and generally acting distressed. His grand finale included throwing himself on my bed and whining while trying to snuggle closer and closer to my body, and that continued until the hiccups subsided -- about 20 minutes later.
My emotions during this display ran the gamut from amusement, to concern, to near-panic, to cornering the dog and determining that yes, he did in fact have the hiccups and probably wasn't dying, to second-guessing that, to annoyance, and back to amusement mixed with a lot of relief when it finally did turn out to be nothing.
Okay so sick shorkie + recovering Piper = kind of funny, kind of crazy blog post. Case closed, right?
Well, maybe. And then again, not so much. Because the interesting thing about watching this whole performance was the realization that when faced with the hiccups, Sampson turned into, um...well...kinda...me?
Yeah, you read that right. What I mean to say here is that apparently, when sick, there is something deeper and gutteral that tends to take over, especially when we don't understand what's going on with our bodies. (Try as I might, I was unable to fully explain to Sam the nature of hiccups. I actually had him drink some water and "promised" him that it would make him feel better. It didn't. Then I remembered how much I hate it when people make promises about my health that don't pan out. Shame on me.) At any rate, the reaction Sammy had, though probably more physical and overt than what I would have done in a similar situation, was something I could definitely relate to on some level. I've FELT that need to run around and try to escape whatever is chasing me -- I've actually acted on it, though with lung disease that one is hard. I've FELT that need to grab on to something -- anything -- familiar and distracting. To retreat somewhere dark and lonely where I can go crazy in peace. And finally, of course, to whine and seek comfort. That one in particular made perfect sense to me. Right, mom?
Granted, Sam was suffering from a case of the doggy hiccups. I'm not going to sugarcoat things here: transplant is not mild indigestion. Far from it. But having so recently experienced my own first "real" illness post-transplant, and acknowledging that I really do have no clue how to manage this "new" body of mine, I couldn't help but empathize with my scared little puppy. Not that I'm claiming this is some sort of mind-boggling revelation or anything, but I really do find some comfort in knowing that maybe I'm not alone in my reactions to feeling out of control sometimes. Maybe we all need a little retreat into the bathroom to try and dig our way to freedom from the tiles. And once we're done with that, it's nice to have someone to curl up with -- preferably someone willing to listen to you whine.
The moral of this story (if there is one, I guess), is that I've now had my first bout of random sickness post-transplant, and Sampson has suffered the effects of his own gluttony, and believe it or not we've both survived. Not that it was easy, or fun for that matter. It wasn't. We both had our moments of being scared, of not understanding, and of flat-out wishing we could run away. (If it hadn't been for my migraine, believe me, I might well have tried to dig my way out of the bathroom.) As it was, we were both about as lucky and as blessed as anyone can be in this crazy life. We got better. Which fact leaves us with the chance to start it all (again) tomorrow.
Perfect. Kind of. Maybe? For now.
I've been really, really sick.
Seriously, when I say "sick" this time, I really mean sick. As in, unbelievable-grossness-meets-super-sedated type sick. Or like...well, like CF sick, really, so I'm sure a lot of you out there know what I'm talking about. The high fevers, vomiting, lack of appetite, high heartrate, low O2, would-get-scared-but-any-emotion-just-serves-to-make-my-headache-worse kind of sick that no one ever really wants to go through. And I have to be honest, it wasn't particularly pretty. And of course it was compounded by the ever-amusing (except when they're not, in which case they are really, really NOT -- trust me on this one) effects of sedation. Wow. Good times to say the least. I think the only thing more fun than being hunched over the toilet while running a fever is being in that position and then looking around and not knowing exactly where you are or how you got there. Yeah, it was just that amazing.
That said, I survived. Thanks to the help of some very wonderful friends willing to put up with my randomly spouting nonsense due to the drugs and, of course, the passing of our good friend time, I was pretty much back to "normal" within 24-48 hours. Of course, the definition of "normal" right now for me includes both an aspergillus (fungal) infection and a pseudomonas (bacterial) infection. So no change to the plan, as I'm still doing the IVs, but now I get three drugs instead of one. Oh well. I'm kinda of the mindset that once you're on it really doesn't much matter -- might as well load the suckers up and wipe out everything at once, right? And the best news I got today (which is also, come to think of it, pretty much the best news possible...ever) is that the results from my biopsy are back and there is NO rejection. Question: is it weird that I feel an odd sense of victory over my own immune system? Not sure if that makes me the winner or the loser, honestly, but it means I get to keep breathing, so I'll take it.
As we used to say in college: major score, baby. (Which statement, by the way, has the unfortunate side effect of making my college friends and I look bad. We weren't normally this uncool. I promise. Kind of.)
Okay, so all that aside: the fact remains that for the past two nights there has been a sick presence in my apartment. On Monday night, without question, I took the grand prize. On Tuesday night, however, things got a little murkier.
The short story is that Sampson got the hiccups. I'm not entirely sure how it happened, though I think it was brought on by literally inhaling two organic mini milk bones. I'm pretty sure those things are just expensive crack for dogs, because Sam goes at them like a deprived junkie every time I head toward the treat closet. Which, to be fair to me, is less a "treat closet" than a "treat shelf" -- my dog is not spoiled enough to have his own closet, though I readily admit that the distinction is a fine one.
The larger point here is that, having acquired the hiccups, Sampson went what could maybe be politely termed "crazy." There are less polite terms, but I'm not going to mention them here, because they'll make my dog look like some sort of Dr. Jekyll and Mr. (Raw)Hyde. Suffice it to say that this was not good. In his panic, Sampson began by jerking around in a pretty solid imitation of a seizure, or an electroshock therapy patient -- by which I mean all-out, on-the-floor style convulsions. And, to be perfectly honest, he does this sometimes. (Yes, I'm aware that I am indicting myself for possible puppy neglect here, but it has, as a matter of fact happened before. My mom has even seen it. In my defense, the vet has declared him seizure free.) So I sort of wait the convulsions out, at which point he starts tearing around the apartment like a madman. And that's impressive, since the entire apartment is only three rooms and has hardwood floors. I swear that dog hit so many walls that if he wasn't prone to seizures before, he may be now. After which mad dash he ended up in the bathroom, he grabbed his bone for some hardcore gnawing, then ended up in my bathroom "digging" his way through the bathmat, and generally acting distressed. His grand finale included throwing himself on my bed and whining while trying to snuggle closer and closer to my body, and that continued until the hiccups subsided -- about 20 minutes later.
My emotions during this display ran the gamut from amusement, to concern, to near-panic, to cornering the dog and determining that yes, he did in fact have the hiccups and probably wasn't dying, to second-guessing that, to annoyance, and back to amusement mixed with a lot of relief when it finally did turn out to be nothing.
Okay so sick shorkie + recovering Piper = kind of funny, kind of crazy blog post. Case closed, right?
Well, maybe. And then again, not so much. Because the interesting thing about watching this whole performance was the realization that when faced with the hiccups, Sampson turned into, um...well...kinda...me?
Yeah, you read that right. What I mean to say here is that apparently, when sick, there is something deeper and gutteral that tends to take over, especially when we don't understand what's going on with our bodies. (Try as I might, I was unable to fully explain to Sam the nature of hiccups. I actually had him drink some water and "promised" him that it would make him feel better. It didn't. Then I remembered how much I hate it when people make promises about my health that don't pan out. Shame on me.) At any rate, the reaction Sammy had, though probably more physical and overt than what I would have done in a similar situation, was something I could definitely relate to on some level. I've FELT that need to run around and try to escape whatever is chasing me -- I've actually acted on it, though with lung disease that one is hard. I've FELT that need to grab on to something -- anything -- familiar and distracting. To retreat somewhere dark and lonely where I can go crazy in peace. And finally, of course, to whine and seek comfort. That one in particular made perfect sense to me. Right, mom?
Granted, Sam was suffering from a case of the doggy hiccups. I'm not going to sugarcoat things here: transplant is not mild indigestion. Far from it. But having so recently experienced my own first "real" illness post-transplant, and acknowledging that I really do have no clue how to manage this "new" body of mine, I couldn't help but empathize with my scared little puppy. Not that I'm claiming this is some sort of mind-boggling revelation or anything, but I really do find some comfort in knowing that maybe I'm not alone in my reactions to feeling out of control sometimes. Maybe we all need a little retreat into the bathroom to try and dig our way to freedom from the tiles. And once we're done with that, it's nice to have someone to curl up with -- preferably someone willing to listen to you whine.
The moral of this story (if there is one, I guess), is that I've now had my first bout of random sickness post-transplant, and Sampson has suffered the effects of his own gluttony, and believe it or not we've both survived. Not that it was easy, or fun for that matter. It wasn't. We both had our moments of being scared, of not understanding, and of flat-out wishing we could run away. (If it hadn't been for my migraine, believe me, I might well have tried to dig my way out of the bathroom.) As it was, we were both about as lucky and as blessed as anyone can be in this crazy life. We got better. Which fact leaves us with the chance to start it all (again) tomorrow.
Perfect. Kind of. Maybe? For now.
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.
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.
Friday, October 1, 2010
Of Fun and Fire Alarms
Note: I originally wrote the following as an email sent to one of my friends, but then decided to share it here since it involves ridiculousness and Sampson -- two things that I happen to know you guys just can't get enough of. Just a warning, the language isn't really kid appropriate and some people may find it offensive. And this post has nothing to do with CF. Or transplant. Or breath in general. This one is all about life, baby. Well, life and a malfunctioning fire alarm, but that's just not as catchy. Enjoy.
it's 5:46. am. and i'm awake. writing you emails. and, considering that i have no job and thus rarely get up before about 9 am, i feel like this probably requires an explanation. luckily, i have one. and it's good.
the reason that i am awake and writing you emails has nothing to do with my inability to sleep. nor does it have anything to do with you. or with sampson. or, quite frankly, with any of the 9,876,542 legitimate reasons one might have for being awake and writing emails at a godforsaken time in the pre-dawn hours. i am not, for example, rushing to catch a 6 am plane. nor am i sick and on my way to the hospital via ambulance and/or helicopter. it has nothing to do with a natural disaster or the apocalypse.
nope, it has nothing to do with any of these reasons. what it does have to do with is a motherfucking battery.
i think.
roughly speaking, the story goes like this: at about 4:30 this morning, i was awakened by a very loud, very high-pitched, and very repetitive noise echoing throughout my not-so-very-large apartment. this was problem #1, and (given the fact that even very sleepy pipers have the logical reasoning capacity to realize that alarm = bad, although i freely admit that tends to be the extent of my skills at that hour) this problem provoked an immediate response in the form of movement from the bed into the kitchen/living room, aka the source of the noise and the location of BOTH of the two alarms in my apartment. um, yeah. we'll discuss the logic of placing two smoke/carbon monoxide alarms in a 3+ room apartment and concentrating both in the same room later. brilliant.
so anyway, i go into my living room. and i go in there alone -- meaning without my dog, who chooses instead to remain behind in my bed with his head (no joke) somewhat buried under my comforter. in other words, any delusions i might have had about guard dog grandeur go straight out my 18th story window. sigh. but i digress...
back to the point. okay, so i'm in the living room. and the first thing i notice is that there is 1) no fire, 2) no clear signs of a fire in another location, such as smoke, heat, or large men in red raincoats. this is a good thing, in theory, except that it leaves me with no explanation for the still-wailing alarm aside from either malfunction or carbon monoxide, neither of which sound like entirely pleasant options. i open the door to my hallway and discover that no alarms appear to be going off in any of the other apartments, which means it's just me disturbing the peace. lovely. i contemplate leaving the door to my apartment open on the theory that if i can't sleep, no one else should either (and by "no one else" i may or may not mean the devil child down the hall in particular), but neighborly goodness wins out in the end and i retreat back into the apartment and close the door. i deserve a medal for being nice. even worse, the noise appears to have gotten louder during my brief stint in the hallway. maybe it's relative. i think it's more likely a conspiracy of badness against me. yeah, that's right: a conspiracy of badness. you read it here first.
to add to the fun, sampson has heard the door opening and closing during my departure from the apartment. and apparently his fear of being left alone is greater than his fear of loud noises, because my big brave boy has now come into the hallway and is looking frantically at the door. when i return, he bolts into the hallway. okay, fine, except that i clearly have to close to the door to keep up the general misconception on my floor that i am, in fact, a nice person rather than a raging bitch who enjoys torturing her neighbors with loud noise at 4 am. which leaves me with two options: either close the door and leave the dog in the hallway, or call the dog back into the apartment and close him in with me. normally, of course, this is a no-brainer, but as i may have mentioned, my apartment at this point in time is really fucking loud. and my dog has just proven himself terrified of the loudness, so it seems kind of cruel to make him come back inside. in the end, i opt to allow him to stay outside the door while i go back in to deal with the noise. exeunt the shorkie, stage left.
the next step is obvious: call the building doormen and whine. so i do. and proceed to have the following conversation with my doorman:
doorman: huh, i can hear the alarm going off [by which he means he can hear it over the intercom because, as i have already pointed out, my apartment is REALLY fucking loud].
piper: yeah. i don't really know how to fix it, or even what the problem is.
doorman: is there a fire?
piper: um...no? i mean there's no smoke, there's no smell, and i don't see any fire. it's not a very big apartment.
doorman: is there any carbon monoxide?
piper: i don't know.
doorman: well can you smell it?
piper: carbon monoxide doesn't smell. that's why you need an alarm.
doorman: oh. well, i can hear it...
and so on.
it finally gets resolved that the doorman will send up a maintenance man, which would be great except he prefaces this declaration with the warning "but i doubt he'll be able to do much and i can't get anyone else here until morning. can you maybe just go to sleep?" mind you, this is after he has repeatedly mentioned that he can hear the alarm loud and clear even through the intercom. i kindly inform him that ignoring the disturbance until morning isn't really an option. then i hang up and begin considering dog-friendly alternate housing arrangements. at which point i become vaguely aware that there is yet another noise now competing with the alarm. similar in tone, annoyance, and general volume, this second noise is somewhat lower in pitch and appears to be coming from the hallway. so i walk in its general direction, and finally open the apartment door, which swings smack into a loudly HOWLING sampson.
so much for my neighbor of the year award. are. you. kidding. me?
the shorkie comes back in with me, then proceeds to jump up on his purple chair and commence shaking and crying. meanwhile the maintenance man arrives [his first words are "holy cow, it's loud in here!"] and requests a ladder. i give him a folding chair. after about 5 minutes of staring at the machine and occasionally poking it with his index finger, he returns to the floor and announces that he doesn't understand the problem, but will return shortly with a battery. he asks whether the alarm was going off when i went to bed. to ask this he literally has to shout at me, and i'm standing less than 2 feet away. why does the entire apartment staff seem to think that i'm capable of sleeping through this alarm? again, i say a polite no and resist the urge to point out that 1) it's really, REALLY fucking loud, and 2) it clearly WOKE ME UP, which means it probably wasn't going off before i woke up. the guy leaves in search of a battery. sampson continues to cry. i suddenly feel much more charitable toward people who use the expression "fuck my life."
fast forward about 10 minutes. the man has returned with a battery and is once again on a chair in my hallway. the shorkie has escaped out the door again and is sitting outside by the elevator bank. in an attempt to strike a balance between playing hostess to the maintenance man and being a responsible dog owner, i am also sitting in the hallway in my pajamas and occasionally pulling open my apartment door to stare at the guy on the chair and listen to him shout at me that he doesn't know how to turn off the alarm. which, you know, i could probably have guessed by myself, considering that the alarm is still going off. he also wonders how the alarm is able to continue terrorizing the entire apartment even without batteries. this is, in fact, one of the great mysteries of life, and i agree with him that it's stupid. if i want to remove my alarm's batteries and risk dying a fiery death, shouldn't it be my right to do so in relative peace and silence? also, given the fact that the alarm has now been blaring for well over 20 minutes and not a single person has emerged from another apartment, i'd say the argument that my alarm going off somehow protects other people in the building is more or less bullshit. clearly my so-called "neighbors" care nothing for me or for their own safety. next time i'm leaving the door open for sure.
five minutes later the maintenance man stops complaining about the noise long enough to replace the battery and the alarm stops. kind of. maybe? well, slows down anyway. basically the alarm goes from a constant blaring noise that is really, really, REALLY fucking loud to a more dignified single beep that is only kind of fucking loud every 2 minutes or so. which improvement is clearly good enough for the maintenance man, as he immediately jumps off the ladder and heads for the hills. as he reaches the elevator i venture to ask whether the building will send up someone more familiar with the alarm system in the morning. (or someone with a sledge hammer. i'm really not picky at this point.) he seems surprised and asks why i would need such a thing. the alarm beeps, triggering loud barking from sampson, who has decided that this more manageable noise is not as scary and therefore constitutes a chance to show off his manly courage in the face of any and all intruders. i am less than impressed. the maintenance man nods knowingly and promises to send someone up, but warns me it might be noon or later before they can get there. he advises me to go back to sleep. sampson growls warningly at the impudent alarm, and i wonder which of them is the inherently dumber creation before sampson begins licking my feet protectively. oh well, at least he's cute.
so now i'm in my apartment with a sort-of-tolerable alarm which may or may not have a problem other than the battery and a sort-of-lovable puppy who may or may not be the least brave animal on the planet, contemplating whether is hould attempt to go back to bed or just give up and make a shitload of coffee instead. all of which goes toward explaining why i'm sending this email at 6:06 am. and why i'm really, really excited to move.
goodnight.
it's 5:46. am. and i'm awake. writing you emails. and, considering that i have no job and thus rarely get up before about 9 am, i feel like this probably requires an explanation. luckily, i have one. and it's good.
the reason that i am awake and writing you emails has nothing to do with my inability to sleep. nor does it have anything to do with you. or with sampson. or, quite frankly, with any of the 9,876,542 legitimate reasons one might have for being awake and writing emails at a godforsaken time in the pre-dawn hours. i am not, for example, rushing to catch a 6 am plane. nor am i sick and on my way to the hospital via ambulance and/or helicopter. it has nothing to do with a natural disaster or the apocalypse.
nope, it has nothing to do with any of these reasons. what it does have to do with is a motherfucking battery.
i think.
roughly speaking, the story goes like this: at about 4:30 this morning, i was awakened by a very loud, very high-pitched, and very repetitive noise echoing throughout my not-so-very-large apartment. this was problem #1, and (given the fact that even very sleepy pipers have the logical reasoning capacity to realize that alarm = bad, although i freely admit that tends to be the extent of my skills at that hour) this problem provoked an immediate response in the form of movement from the bed into the kitchen/living room, aka the source of the noise and the location of BOTH of the two alarms in my apartment. um, yeah. we'll discuss the logic of placing two smoke/carbon monoxide alarms in a 3+ room apartment and concentrating both in the same room later. brilliant.
so anyway, i go into my living room. and i go in there alone -- meaning without my dog, who chooses instead to remain behind in my bed with his head (no joke) somewhat buried under my comforter. in other words, any delusions i might have had about guard dog grandeur go straight out my 18th story window. sigh. but i digress...
back to the point. okay, so i'm in the living room. and the first thing i notice is that there is 1) no fire, 2) no clear signs of a fire in another location, such as smoke, heat, or large men in red raincoats. this is a good thing, in theory, except that it leaves me with no explanation for the still-wailing alarm aside from either malfunction or carbon monoxide, neither of which sound like entirely pleasant options. i open the door to my hallway and discover that no alarms appear to be going off in any of the other apartments, which means it's just me disturbing the peace. lovely. i contemplate leaving the door to my apartment open on the theory that if i can't sleep, no one else should either (and by "no one else" i may or may not mean the devil child down the hall in particular), but neighborly goodness wins out in the end and i retreat back into the apartment and close the door. i deserve a medal for being nice. even worse, the noise appears to have gotten louder during my brief stint in the hallway. maybe it's relative. i think it's more likely a conspiracy of badness against me. yeah, that's right: a conspiracy of badness. you read it here first.
to add to the fun, sampson has heard the door opening and closing during my departure from the apartment. and apparently his fear of being left alone is greater than his fear of loud noises, because my big brave boy has now come into the hallway and is looking frantically at the door. when i return, he bolts into the hallway. okay, fine, except that i clearly have to close to the door to keep up the general misconception on my floor that i am, in fact, a nice person rather than a raging bitch who enjoys torturing her neighbors with loud noise at 4 am. which leaves me with two options: either close the door and leave the dog in the hallway, or call the dog back into the apartment and close him in with me. normally, of course, this is a no-brainer, but as i may have mentioned, my apartment at this point in time is really fucking loud. and my dog has just proven himself terrified of the loudness, so it seems kind of cruel to make him come back inside. in the end, i opt to allow him to stay outside the door while i go back in to deal with the noise. exeunt the shorkie, stage left.
the next step is obvious: call the building doormen and whine. so i do. and proceed to have the following conversation with my doorman:
doorman: huh, i can hear the alarm going off [by which he means he can hear it over the intercom because, as i have already pointed out, my apartment is REALLY fucking loud].
piper: yeah. i don't really know how to fix it, or even what the problem is.
doorman: is there a fire?
piper: um...no? i mean there's no smoke, there's no smell, and i don't see any fire. it's not a very big apartment.
doorman: is there any carbon monoxide?
piper: i don't know.
doorman: well can you smell it?
piper: carbon monoxide doesn't smell. that's why you need an alarm.
doorman: oh. well, i can hear it...
and so on.
it finally gets resolved that the doorman will send up a maintenance man, which would be great except he prefaces this declaration with the warning "but i doubt he'll be able to do much and i can't get anyone else here until morning. can you maybe just go to sleep?" mind you, this is after he has repeatedly mentioned that he can hear the alarm loud and clear even through the intercom. i kindly inform him that ignoring the disturbance until morning isn't really an option. then i hang up and begin considering dog-friendly alternate housing arrangements. at which point i become vaguely aware that there is yet another noise now competing with the alarm. similar in tone, annoyance, and general volume, this second noise is somewhat lower in pitch and appears to be coming from the hallway. so i walk in its general direction, and finally open the apartment door, which swings smack into a loudly HOWLING sampson.
so much for my neighbor of the year award. are. you. kidding. me?
the shorkie comes back in with me, then proceeds to jump up on his purple chair and commence shaking and crying. meanwhile the maintenance man arrives [his first words are "holy cow, it's loud in here!"] and requests a ladder. i give him a folding chair. after about 5 minutes of staring at the machine and occasionally poking it with his index finger, he returns to the floor and announces that he doesn't understand the problem, but will return shortly with a battery. he asks whether the alarm was going off when i went to bed. to ask this he literally has to shout at me, and i'm standing less than 2 feet away. why does the entire apartment staff seem to think that i'm capable of sleeping through this alarm? again, i say a polite no and resist the urge to point out that 1) it's really, REALLY fucking loud, and 2) it clearly WOKE ME UP, which means it probably wasn't going off before i woke up. the guy leaves in search of a battery. sampson continues to cry. i suddenly feel much more charitable toward people who use the expression "fuck my life."
fast forward about 10 minutes. the man has returned with a battery and is once again on a chair in my hallway. the shorkie has escaped out the door again and is sitting outside by the elevator bank. in an attempt to strike a balance between playing hostess to the maintenance man and being a responsible dog owner, i am also sitting in the hallway in my pajamas and occasionally pulling open my apartment door to stare at the guy on the chair and listen to him shout at me that he doesn't know how to turn off the alarm. which, you know, i could probably have guessed by myself, considering that the alarm is still going off. he also wonders how the alarm is able to continue terrorizing the entire apartment even without batteries. this is, in fact, one of the great mysteries of life, and i agree with him that it's stupid. if i want to remove my alarm's batteries and risk dying a fiery death, shouldn't it be my right to do so in relative peace and silence? also, given the fact that the alarm has now been blaring for well over 20 minutes and not a single person has emerged from another apartment, i'd say the argument that my alarm going off somehow protects other people in the building is more or less bullshit. clearly my so-called "neighbors" care nothing for me or for their own safety. next time i'm leaving the door open for sure.
five minutes later the maintenance man stops complaining about the noise long enough to replace the battery and the alarm stops. kind of. maybe? well, slows down anyway. basically the alarm goes from a constant blaring noise that is really, really, REALLY fucking loud to a more dignified single beep that is only kind of fucking loud every 2 minutes or so. which improvement is clearly good enough for the maintenance man, as he immediately jumps off the ladder and heads for the hills. as he reaches the elevator i venture to ask whether the building will send up someone more familiar with the alarm system in the morning. (or someone with a sledge hammer. i'm really not picky at this point.) he seems surprised and asks why i would need such a thing. the alarm beeps, triggering loud barking from sampson, who has decided that this more manageable noise is not as scary and therefore constitutes a chance to show off his manly courage in the face of any and all intruders. i am less than impressed. the maintenance man nods knowingly and promises to send someone up, but warns me it might be noon or later before they can get there. he advises me to go back to sleep. sampson growls warningly at the impudent alarm, and i wonder which of them is the inherently dumber creation before sampson begins licking my feet protectively. oh well, at least he's cute.
so now i'm in my apartment with a sort-of-tolerable alarm which may or may not have a problem other than the battery and a sort-of-lovable puppy who may or may not be the least brave animal on the planet, contemplating whether is hould attempt to go back to bed or just give up and make a shitload of coffee instead. all of which goes toward explaining why i'm sending this email at 6:06 am. and why i'm really, really excited to move.
goodnight.
Friday, September 24, 2010
Just Do It: Cure Edition
So I'm always going on and on around here about my awesome family, and sometimes I wonder if you all get sick of it. I mean, be honest, here. Are you tired of coming onto my blog all geared up to here (yet another) story about the life and times of a slightly crazy transplant patient and her very high-strung puppy, only to find yourself somewhat disappointed by the fact that all I ever seem to talk about anymore is my fabulously helpful mother, my fun-loving father, or my pretty much ridiculously talented sister? Yeah, I kind of figured as much. But fear not, lovely people, because I 100% promise to you all that this particular post that you are about to read will not be in any way shape or form about my fabulous family. No, really, I mean it this time.
It's gonna be about my equally fabulous friends.
Shocker. Bet y'all didn't see that one coming from a mile away, did you?
But, although I'm not kidding when I say that all of my friends definitely deserve to have a blog dedicated to their wonderfulness, this post is about one friend in particular. Remember this guy?
(Psst...he's the one on the right.)
Yep, that's Ben, who at around this time last year ran the 2009 NYC Marathon, and in the process raised about $4,000 for Team Boomer and the fight to cure cystic fibrosis. Um, yeah, did I mention that I have pretty fabulous friends? I wasn't kidding...
So this year, of course, Ben is at it again. Believe me, beautiful readers, I have tried (and tried, and tried, and tried again) to get this guy to slow down and stand still more often. And frankly, it just flat-out doesn't work. He pretty much makes me look lazy (actually, he would probably make the Tazmanian Devil look like a couch potato if the two ever went up head-to-head, though it's possible that our own "super fibros" Ronnie and/or Jerry Cahill could outrun him, not to mention Rock CF's incredible Emily. Just sayin', Ben.) Given that simple fact, though, I've decided instead to focus my energy on something a lot more doable than forcing Ben to stop moving. Something relatively easy like, say, finding a cure and saving the lives of over 70,000 children and adults around the world. Right. Because we all know that together we can totally do that.
Which is why, on 10/10/10, Ben is going to be running the Chicago Marathon in support of the Cystic Fibrosis Foundation. And, as we all know, the CFF is an amazing charity, with over 90 cents of every single dollar raised going directly towards life-saving research and drug development. In the immortal words of Dr. Bob Beall: money equals research and research equals science and science equals LIFE.
But, of course, none of you need me to tell you that, right?
PLEASE show your support for this amazing guy and this amazing cause. There are so many ways to do it, and they're all super easy.
1) Obviously, this is a fundraiser, the primary goal of which is to, well, raise funds. If you feel like helping out Ben's marathon awesomeness, please do so here.
2) If you live near the Chicago area, please go out and support Ben and all the runners on Sunday, October 10th. I'm not allowed to travel for a while post-tx, or I would totally be there. And, of course, cheer especially loud for all the wonderful people running for the CFF.
3) Feel free to leave Ben a message in the comments of this blog to let him know who he's fighting for and how much we all appreciate it. Believe me, this sort of encouragement will probably come in handy around mile 25 or so!
Honestly, I know I joke around quite a bit on the blog, but on a serious note: I'm so beyond proud and grateful to have amazing people in my life. And to everyone who continues to -- or has in the past, or ever will in the future -- put so much time, effort, and energy into the race to cure this crazy disease, please know that all the blogs in the world could never even begin to touch on how awesome you are. To you it might mean 26 miles (and 385 yards) of sweat and effort, but to 70,000 people around the world, it means everything.
It's gonna be about my equally fabulous friends.
Shocker. Bet y'all didn't see that one coming from a mile away, did you?
But, although I'm not kidding when I say that all of my friends definitely deserve to have a blog dedicated to their wonderfulness, this post is about one friend in particular. Remember this guy?
(Psst...he's the one on the right.)
Yep, that's Ben, who at around this time last year ran the 2009 NYC Marathon, and in the process raised about $4,000 for Team Boomer and the fight to cure cystic fibrosis. Um, yeah, did I mention that I have pretty fabulous friends? I wasn't kidding...
So this year, of course, Ben is at it again. Believe me, beautiful readers, I have tried (and tried, and tried, and tried again) to get this guy to slow down and stand still more often. And frankly, it just flat-out doesn't work. He pretty much makes me look lazy (actually, he would probably make the Tazmanian Devil look like a couch potato if the two ever went up head-to-head, though it's possible that our own "super fibros" Ronnie and/or Jerry Cahill could outrun him, not to mention Rock CF's incredible Emily. Just sayin', Ben.) Given that simple fact, though, I've decided instead to focus my energy on something a lot more doable than forcing Ben to stop moving. Something relatively easy like, say, finding a cure and saving the lives of over 70,000 children and adults around the world. Right. Because we all know that together we can totally do that.
Which is why, on 10/10/10, Ben is going to be running the Chicago Marathon in support of the Cystic Fibrosis Foundation. And, as we all know, the CFF is an amazing charity, with over 90 cents of every single dollar raised going directly towards life-saving research and drug development. In the immortal words of Dr. Bob Beall: money equals research and research equals science and science equals LIFE.
But, of course, none of you need me to tell you that, right?
PLEASE show your support for this amazing guy and this amazing cause. There are so many ways to do it, and they're all super easy.
1) Obviously, this is a fundraiser, the primary goal of which is to, well, raise funds. If you feel like helping out Ben's marathon awesomeness, please do so here.
2) If you live near the Chicago area, please go out and support Ben and all the runners on Sunday, October 10th. I'm not allowed to travel for a while post-tx, or I would totally be there. And, of course, cheer especially loud for all the wonderful people running for the CFF.
3) Feel free to leave Ben a message in the comments of this blog to let him know who he's fighting for and how much we all appreciate it. Believe me, this sort of encouragement will probably come in handy around mile 25 or so!
Honestly, I know I joke around quite a bit on the blog, but on a serious note: I'm so beyond proud and grateful to have amazing people in my life. And to everyone who continues to -- or has in the past, or ever will in the future -- put so much time, effort, and energy into the race to cure this crazy disease, please know that all the blogs in the world could never even begin to touch on how awesome you are. To you it might mean 26 miles (and 385 yards) of sweat and effort, but to 70,000 people around the world, it means everything.
Monday, September 20, 2010
New Lung Resolutions: Post-Transplant Edition
My CF and blogger friend Amy recently posted her own blog in response to one of my blogs, in which she aks pre-transplant CFers to consider what they would do with new lungs. Awesome idea, and I totally encourage you all to go over there, check it out, and get in on the conversation. You can either leave it there in her comments section or just leave a link to your blog in there and then write your own, larger piece on the subject.
The fact of the matter is that lungs are a precious gift. You know that, I know that, the donor families know that (which is what allows them to make such a selfless decision during a difficult time), the doctors know that...heck, we all know it. But the reason that lungs are so precious is that they allow you to LIVE. They allow you to be you -- and maybe even a new version of yourself, with sides you never even knew you had, because of all the energy that is no longer devoted just to the simple act of breathing. There's a reason that the button on the sidebar of my blog says Donate LIFE. And LIFE, as we all know, is subjective. It means different things to different people.
So as a response to Amy's post in response to my post (whew! Did you follow that?) I decided to dig through some of my old posts to see what I envisioned for life with new lungs back before I had them. And I found this list (entire post can be found here):
The funny thing about all of this, of course, is that I'm still not really "normal" by most people's standards. I spend a whole lot of time up at the hospital or getting blood labs or counting out pills or having bronchs or refilling prescriptions or taking my vital signs. I still have limited lung function (although it is climbing!). I'm still underweight and I take enzymes whenever I eat like many other CFers. I'm immuno-suppressed and vulnerable to infection. I've dealt with rejection and IV steroids. I have recently acquired CFRD and continue to struggle with insulin. And at the end of the day, I'm still just 3 months out of a double-lung transplant. But all these things, which seemed so daunting with my CF lungs or even during the period directly after transplant, somehow just don't seem all that huge anymore. They're still there, and I'm not going to ignore or gloss over them, but I find myself spending less and less time actually focusing on my health -- and more and more time focusing on other things, whether that means all the activities I dreamed of pre-transplant, or just the simple stuff I'm lucky enough to enjoy every single day.
So that, beautiful people, is my updated version of my "new lung resolutions" -- written 9 months (and seemingly a lifetime) after the original post. It may not be perfect (I'm only human, after all), but it's definitely close enough for me. And it fits my definition of LIFE to a "T."
The fact of the matter is that lungs are a precious gift. You know that, I know that, the donor families know that (which is what allows them to make such a selfless decision during a difficult time), the doctors know that...heck, we all know it. But the reason that lungs are so precious is that they allow you to LIVE. They allow you to be you -- and maybe even a new version of yourself, with sides you never even knew you had, because of all the energy that is no longer devoted just to the simple act of breathing. There's a reason that the button on the sidebar of my blog says Donate LIFE. And LIFE, as we all know, is subjective. It means different things to different people.
So as a response to Amy's post in response to my post (whew! Did you follow that?) I decided to dig through some of my old posts to see what I envisioned for life with new lungs back before I had them. And I found this list (entire post can be found here):
- Go running in Central Park: Not yet. Actually, I haven't done much running at all, unless you count short jogs down the street. This is a little frustrating to me, as I think I believed that new lungs = breathing = running. Unfortunately I forgot the other side of this equation, which is that new lungs = surgery = scars = pain = not-so-much running. Whoops. Still, I have WALKED in several parks, and loved it -- and I hope that soon my scars will heal enough for some longer running spurts. Probably just in time for winter, no doubt.
- Buy a beautiful dress, go dancing, and stay out on the floor as long as I want: Hmm...this is an interesting one. Don't remember why I thought this was important, but I have, in fact, bought a beautiful dress since transplant. Even better, I bought a beautiful dress from the fashion line designed by my sister (SUNO). Love it. And while I have yet to go dancing in a club (germ control in full effect still), I have danced around my apartment -- a lot -- without getting out of breath. It is every bit as wonderful as I thought it would be.
- Spend a day volunteering for a cause that is not at all CF-related: Okay, this one I like, if for no other reason than it makes me seem less materialistic than the dress one (oh yeah, I'm definitely that vain, believe me). Volunteering used to be a huge part of my life in college, and though I haven't done it yet with new lungs, I'm super excited about the prospect. Considering the generosity of my donor and his family, I have no doubt that volunteering will come naturally to my lovely new lungs.
- Play with my puppy more (I mean really, really play): Check, check, and more check. My puppy is actually passed out on the floor as we speak after a rousing game of fetch with his favorite squeaky tennis ball. I'm not sure Sampson can handle me with new lungs, but he's having fun trying so far.
- Go to a museum: I visited an exhibit with my mom and a friend not all that long after my surgery. I was still tired and a little sore at that point, but I do remember enjoying the sensation of walking around, not having to find a bench every few steps, and still having the energy left over to walk to lunch afterward. Museums are definitely a whole new world post-transplant. Did you know there's actually ART in those things? Wow.
- Continue to journal/write/paint/express myself: The interesting thing is I think I've gotten WORSE at these things in the past 3 months, as is probably reflected in this blog. For starters, writing and being creative takes time, and recently I've had so much going on that it's honestly difficult to sit down and put in the hours necessary to do a good job. Beyond that, this sort of expression also requires concentration, something that seems all too rare these days thanks to the one-two punch of prograf and prednisone. The first of these reasons is a good thing; the second, not so much. But I'm also happy to report that the "prograf brain" and "pred mania" both seem to be waning. Fingers crossed anyway.
- Take a tai chi class: Since transplant I have taken a writing class (online), several gyrotonic classes, and am signed up to start a French class soon. Granted, none of these is tai chi. So sue me.
- Continue to meditate: Um, did I mention my good friends prograf and prednisone? Yeah, they're not so hot on meditation, apparently. Unfortunately for them, I just this week got back into the swing of things and am even planning to do a two-day meditation workshop in November. Take that, stupid annoying drug side effects.
- Dance in the rain -- literally: Well, I got caught in the rain while taking a nice, long, post-transplant walk. Does that count? It was a lot of rain, I promise.
- Watch a sunset and a sunrise (need not be the same day): I've watched several sunsets and one set of fireworks on the Hudson River, so I'm gonna call this one good for now. I still plan to watch more, obviously.
- Find a way to do something to say thank you to my family for everything they've done for me this year: Any ideas? Anyone?? Please?
- Be grateful. Be patient. Be humble.: Grateful...check. Patient...Um, working on it. Humble...Well, I think I do a really good job on this one, if I do say so myself. Obviously.
- Practice compassion for myself and others at every chance possible: Clearly this is an ongoing thing.
The funny thing about all of this, of course, is that I'm still not really "normal" by most people's standards. I spend a whole lot of time up at the hospital or getting blood labs or counting out pills or having bronchs or refilling prescriptions or taking my vital signs. I still have limited lung function (although it is climbing!). I'm still underweight and I take enzymes whenever I eat like many other CFers. I'm immuno-suppressed and vulnerable to infection. I've dealt with rejection and IV steroids. I have recently acquired CFRD and continue to struggle with insulin. And at the end of the day, I'm still just 3 months out of a double-lung transplant. But all these things, which seemed so daunting with my CF lungs or even during the period directly after transplant, somehow just don't seem all that huge anymore. They're still there, and I'm not going to ignore or gloss over them, but I find myself spending less and less time actually focusing on my health -- and more and more time focusing on other things, whether that means all the activities I dreamed of pre-transplant, or just the simple stuff I'm lucky enough to enjoy every single day.
So that, beautiful people, is my updated version of my "new lung resolutions" -- written 9 months (and seemingly a lifetime) after the original post. It may not be perfect (I'm only human, after all), but it's definitely close enough for me. And it fits my definition of LIFE to a "T."
Thursday, September 16, 2010
Riddle Me This
Okay, beautiful people, here's a riddle for your Thursday night pleasure. What has two hands for typing, two lungs for breathing, approximately two thousand doctors to visit on a monthly basis (warning: the preceding figure is just an estimate -- actual number of doctors visited may vary), give or take two more months until her 29th birthday, and two bedrooms in her current apartment -- one of which is now distinctly empty?
Give up?
Yes, you read that last part right. As of right now there is only one person (and one super fat shorkie) living in my 18th story abode. And yesterday, after 15 months of urban not-so-zen, my mother/nurse/roommate/appointment scheduler/pill manager/dog walker/friend packed up her (many) suitcases and made her way out of New York City...and back to Colorado.
Back to her husband (aka, my father), her job, her dogs, her house, her garden, her friends, her favorite coffee shops and restaurants, and, well, her life.
And I, of course, already miss her like crazy. Sampson spent a good part of yesterday evening sitting by the door in anticipation of his "grandma's" return. When being patient didn't work, he resorted to some very un-dignified barking. When that also failed, he heaved a huge sigh and flopped down despondently on the couch. My thoughts exactly, Sammybear.
On Tuesday my mom came with me to a routine transplant clinic appt just to see my doctor for the final time before her big move. Honestly, we couldn't have asked for a better visit overall. Things are going great with my new lungs. My numbers are great and, far more importantly, I feel as though I could take on the world. My friends are sick of me already because I guess they didn't realize that new lungs mean bigger lung capacity (i.e., the ability to talk for hours) and more energy to run around like a madwoman. My dog pretty much refuses to walk with me anymore since I rarely have the patience to stop as often as he would like. Everyone complains that I'm too fast for them to keep up with on the street -- and I revel in every second of it.
There is so much to do in the future. So much hope and promise, and so many exciting options. Without sounding too pollyanna about it all, I'm really looking forward to trying out some new things and flexing my wings a little. The other day it dawned on me that people all too rarely get the sudden chance to reinvent themselves. Life is pretty fast paced most of the time, and there's always a good reason to stick with the status quo. Which, of course, makes a lot of sense from a practical standpoint, but how lucky am I to have a natural break to take stock of myself right now?
Yeah, I said it: I'm lucky. I went there.
Honestly, I'm a big fan of keeping things in perspective. (Um, okay, fine: most of the time. I'm sure I have family members out there who just fell off their chairs in shock reading that sentence.) I'm not about to claim that being born with cystic fibrosis is lucky. Needing a lung transplant in your 20s is decidedly unlucky, in fact. As is being "disabled" or having to swallow ridiculous amounts of drugs to kill your immune system everyday. These things kind of suck, no doubt about it. End of story.
Except that it's not really the end. Because as cynical as I am some of the time, I would be really hard-pressed to try and claim that I'm not lucky -- or at least it would be hard to do that while keeping a straight face. As a law school graduate, I just can't ignore the hardcore evidence.
I was born with an unlucky disease, but I have been lucky enough to meet some awesome people as a result.
I might have been unlucky to need new lungs, but I was lucky enough to get them. So, so lucky.
I am unlucky in the sense that I'm a hardcore veteran of the medical system, and lucky enough to have had some of the best doctors I could ever imagine.
I am currently in the unlucky position of trying to recover from a super intense surgery in which they swapped out some of my most vital organs for those of a stranger (um, wow, right?), but that very fact also means that I find myself with a lot of time for reflection, planning, personal growth, and education. That, my friends, is pretty darn lucky, even if I do say so myself.
And I mean, sure, these are only silver linings in what some would consider a very cloudy sky, but that doesn't make them any less precious or their shine any less brilliant. Which means that even as I was (and will be for a long time) very sad in one sense to see my mom get in that cab to the airport, I was also unbelievably grateful. Not just for everything she gave me when she was here, but also for her grace and wisdom in knowing how to wave goodbye and get on that plane. It was a lesson by example that I hope I can carry with me forever -- how to care for someone with great compassion and love, and then to step back to allow that person to care for herself.
So what has two hands for typing, two lungs for breathing, approximately two thousand doctors to visit on a monthly basis, give or take two more months until her 29th birthday, two bedrooms in her current apartment -- one of which is now distinctly empty -- and is quite simply one of the luckiest girls in the entire world?
Well, I think we all know the answer to that one. I love you, mom.
Give up?
Yes, you read that last part right. As of right now there is only one person (and one super fat shorkie) living in my 18th story abode. And yesterday, after 15 months of urban not-so-zen, my mother/nurse/roommate/appointment scheduler/pill manager/dog walker/friend packed up her (many) suitcases and made her way out of New York City...and back to Colorado.
Back to her husband (aka, my father), her job, her dogs, her house, her garden, her friends, her favorite coffee shops and restaurants, and, well, her life.
And I, of course, already miss her like crazy. Sampson spent a good part of yesterday evening sitting by the door in anticipation of his "grandma's" return. When being patient didn't work, he resorted to some very un-dignified barking. When that also failed, he heaved a huge sigh and flopped down despondently on the couch. My thoughts exactly, Sammybear.
On Tuesday my mom came with me to a routine transplant clinic appt just to see my doctor for the final time before her big move. Honestly, we couldn't have asked for a better visit overall. Things are going great with my new lungs. My numbers are great and, far more importantly, I feel as though I could take on the world. My friends are sick of me already because I guess they didn't realize that new lungs mean bigger lung capacity (i.e., the ability to talk for hours) and more energy to run around like a madwoman. My dog pretty much refuses to walk with me anymore since I rarely have the patience to stop as often as he would like. Everyone complains that I'm too fast for them to keep up with on the street -- and I revel in every second of it.
There is so much to do in the future. So much hope and promise, and so many exciting options. Without sounding too pollyanna about it all, I'm really looking forward to trying out some new things and flexing my wings a little. The other day it dawned on me that people all too rarely get the sudden chance to reinvent themselves. Life is pretty fast paced most of the time, and there's always a good reason to stick with the status quo. Which, of course, makes a lot of sense from a practical standpoint, but how lucky am I to have a natural break to take stock of myself right now?
Yeah, I said it: I'm lucky. I went there.
Honestly, I'm a big fan of keeping things in perspective. (Um, okay, fine: most of the time. I'm sure I have family members out there who just fell off their chairs in shock reading that sentence.) I'm not about to claim that being born with cystic fibrosis is lucky. Needing a lung transplant in your 20s is decidedly unlucky, in fact. As is being "disabled" or having to swallow ridiculous amounts of drugs to kill your immune system everyday. These things kind of suck, no doubt about it. End of story.
Except that it's not really the end. Because as cynical as I am some of the time, I would be really hard-pressed to try and claim that I'm not lucky -- or at least it would be hard to do that while keeping a straight face. As a law school graduate, I just can't ignore the hardcore evidence.
I was born with an unlucky disease, but I have been lucky enough to meet some awesome people as a result.
I might have been unlucky to need new lungs, but I was lucky enough to get them. So, so lucky.
I am unlucky in the sense that I'm a hardcore veteran of the medical system, and lucky enough to have had some of the best doctors I could ever imagine.
I am currently in the unlucky position of trying to recover from a super intense surgery in which they swapped out some of my most vital organs for those of a stranger (um, wow, right?), but that very fact also means that I find myself with a lot of time for reflection, planning, personal growth, and education. That, my friends, is pretty darn lucky, even if I do say so myself.
And I mean, sure, these are only silver linings in what some would consider a very cloudy sky, but that doesn't make them any less precious or their shine any less brilliant. Which means that even as I was (and will be for a long time) very sad in one sense to see my mom get in that cab to the airport, I was also unbelievably grateful. Not just for everything she gave me when she was here, but also for her grace and wisdom in knowing how to wave goodbye and get on that plane. It was a lesson by example that I hope I can carry with me forever -- how to care for someone with great compassion and love, and then to step back to allow that person to care for herself.
So what has two hands for typing, two lungs for breathing, approximately two thousand doctors to visit on a monthly basis, give or take two more months until her 29th birthday, two bedrooms in her current apartment -- one of which is now distinctly empty -- and is quite simply one of the luckiest girls in the entire world?
Well, I think we all know the answer to that one. I love you, mom.
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