Friday, July 31, 2009

Just your (not so) average, (extra)ordinary, (anything but) normal mid-twenties existential crises

I don't write poetry often, or at least not anymore since I outgrew my teenage angst phase. You'll probably understand why in a few minutes, but since I gave up hope long ago of this blog every winning a Pulitzer anyway, I thought I'd share a little of what I've been writing about lately as I've been working to come to terms with CF and all that it means for my life at this point. Hopefully some of you can at least relate, and if the Pulitzer Committee just happens to read it and love it, well, that's okay too.

In the Moment

Remember this moment as a time of rediscovery, as a point where the stalks of long-held beliefs slowly dried out and were pruned down, and new understandings allowed to take root and to grow.

Remember this as a time of challenge, a puzzle to solve on how to give back to your body with the same grace it has shown you in allowing you to live so long without the effects of this disease, of how to reconcile these two selves, both so fully and completely you, and be as giving of one as you are of the other.

Remember this as a time of positivity, not dulled or tarnished by the stains of denial, but made brighter by the knowledge of your own strength, and the reserves of energy that you know course through your beat-up veins, lending polish to hope and shine to perseverance.

Remember this as a time of revelation, when for once your value was not (could not be) defined by what you could do, but simply by who you are, and by your innermost spirit.

Remember this as a time for learning, when you came to readjust your sense of what it means to live well, and sought out a new balance based on that lesson.

Remember this as a time of opening, when you reached within yourself and cradled in your hand the tiny treasures of your own thoughts, and learned (soon, I hope), to cherish them no matter how small or tarnished.

Remember this as a time of trust, when you learned to let go of things beyond your control and began to release your heart to the ultimate wisdom and perfect balance of something far greater than you or I.

Remember this as a time of acceptance, when everyone -- family, friends, godmother, coworkers, doctors, and even your puppy -- rallied so strongly, so unconditionally, behind you, accepting your limitations, their arms stretched wide to break your fall.

Remember this as a time of searching, when the will and the wonder necessary to seek some deeper kernel of peace were ever-present, and for once not fleeting or tied to one particular moment.

Remember this as a time of surrender (NOT of giving up), of striving to gracefully accept the need for help and of finally learning the true meaning of the phrase "thank you" after so many years.

Remember this as a time of beauty, when even thunderous lightening storms seemed like fireworks designed to light up the skyline, and called to you to run outside to feel every drop dancing down your cheeks.

Remember this as a time of longing, when you knew what it was to cry hot tears of desperation and feel the cold fear of the unknown at the same time. Hold this understanding with you always, store it deep and equal to the sweetness of knowing without question that there is beauty, and that you are part of it.

Remember this as a time when hands reached down to pull you up, shoulders appeared for you to lean on, prayers from many persuasions wove a rich blanket to keep you warm, and the ultimate love of the universe held out its arms to lift you all up.

Above all, remember this as a time of grace, as a brief moment when you were forced to feel, and knew both pain and gratitude in equal, intense measure. Such moments, we know, are precious and all too rare.

And this, too, shall pass.

Wednesday, July 29, 2009

Pip's Tips: Lessons on How to Survive the Hospital

Lesson 1) BYOE (Bring Your Own Everything/Essentials/Enzymes)

Hey, life in lock up is rough, we all know that. Why make it worse by not eating? Today (day 3 of hospital admission, although to be fair only my second FULL day), my nurse did something surprising and unexpected: she gave me enzymes with my meal! Granted, the enzymes have been ordered since day 1, and I've asked for them on a daily (well, make that 3x per day) basis, but today they suddenly showed up. At breakfast. And dinner. Not so much lunch, though, and definitely no extra for snacks. And yet, here I sit, fully fed and not on the toilet.

Nope, I'm not superwoman (ahem, well, I mean, not for that reason anyway). I just know from experience that self-medication is often necessary in the joint, and like a good boy scout, I've learned to be prepared. For me this means having "back-up" supplies of any med that I might be uncomfortable without or which might be time sensitive. My personal "big three"? Enzymes, xopenex inhaler (for those days when
morning" nebs come around 1 pm), and most recently ativan.

Lesson 2) If the peripheral IV that the nurse is inserting is for a CT scan, make sure s/he KNOWS it's for a CT scan

This one might seem a little strange. After all, why wouldn't the nurse know what the peripheral IV was for, since you clearly already have a port/PICC/whatever else delivering your antibiotics? And why should it matter WHAT the IV is for anyway? An IV is an IV is an IV, right?

Sorry, cyster, and not so fast, fibro. Turns out, CT scan IVs require a larger-gauge needle, perhaps because the contrast dye doesn't go pass through the smaller gauges well. I'm unclear on the technical details here, probably because everything was feeling a little fuzzy after the IV nurse inserted (and subsequently blew) no less than 4 peripheral IVs in my arm in less than 15 minutes. He then properly inserted and did NOT blow a fifth IV, which fit snugly into a cute little vein in my hand. Alas, it was not to be, because as he left the room he commented on my uneaten lunch and I explained I was NPO before the CT scan. He immediately turned around, got a really pissed-off look on his face, and removed the hard-won IV from my hand, explaining that this particular IV would not work for a CT scan and no one had informed HIM of the need for a large-gauge needle. Whoops.

I felt for the guy. I really did. He inserted (and blew) one more IV before giving up entirely and calling in another IV nurse, who managed to outfit the inside of my right wrist (right under the thumb) with the least-convenient IV ever. But I'm not complaining. Never. Not my style.

Lesson 3) Become Master of Your Own Discharge

My doctor told me this morning that I could leave tomorrow. Since then, I've been telling everyone who will listen (and some who clearly didn't want to) that I'm out of here as soon as possible tomorrow, preferably by early afternoon. And no, this is not because I'm some sort of evil, demanding, devil child who will do anything to force her way out of here and back to a working shower. Not at all. It's just that I've done the discharge dance enough times to know that things get scheduled for the day of your discharge, and then you have to wait. So why not tell the CPT guy in advance that you're scheduled to leave so he doesn't leave you for last? Why not inform the nursing station so they can make sure to get you your morning nebs extra early? In short, why not (politely, of course) bring everyone onto the same page, so you don't get stuck waiting on some last minute test or x-ray that just didn't get on the schedule in time? So far tomorrow I know I'm in for an echocardiogram before I get to break out, but my nurse has promised me it should be early in the morning. And of course if it isn't I'll wait patiently (thanks, Ativan!), but wouldn't it be great not to have to?

Lesson 4: Neb Cup Sanitation -- Piper Style

Don't know about you guys, but at our hospital we have a one neb cup per med per 24 hours rule. That basically means, fr things like HTS or xopenex, that they get used 3-4 times before they get switched, and in between that time they're sitting in the hospital room, exposed to hospital air.

Or are they?

Step 1: Receive and label neb cup (this one's for DNAse)

Step 2: Remove glove from box of sterile gloves that should be near the door of EVERY CFer (so nurses, etc, don't spread germs from patient to patient)

Step 3: Place glove securely over mouthpiece and top of neb cup, thus minimizing exposure of neb mouthpiece to hospital air, and ensuring that nothing will get into the cup of the neb through the top openings

Voila. Okay fine, it's not how your mama used to sanitize your nebs, and it's certainly not foolproof, but ask your nurse for a clean basin lined with plastic to place these babies in once they're covered and you can be relatively secure in your neb-cup safety. For 24 hours, at least.

And there you have it, tips for surviving life in the leper colony. And hopefully something to make you smile while you wait for those discharge papers to be written up.

Tuesday, July 28, 2009

My CF Firsts

Shout out to "Cystic Gal" for the idea to post these. Also Ronnie, don't worry, I'm going to get around to your question too. I've got NOTHING but time right now.

CF Firsts

Diagnosis: 6 Weeks old in 1981 for failure to thrive and pneumonia. As an infant I was well over 100 on the sweat test, which is apparently a major whoa kind of situation.

First CF Doc: Dr. Cotten and Dr. Accurso at Children's Hospital Denver . . . love that team.

First CF Friend: My next-door neighbor at the house where I was born. She was/is older than me by a couple of months, but was diagnosed a year or so later after it was noted that she had almost all the same symptoms I had. A couple years later, she gained a younger sister with CF. The three of us are still close.

First time I *knew* I had CF: Probably at around 4-5, which is when I started working the American Airlines Celebrity Ski Event to raise money for CF. I was just there along with my two neighbors as (semi) cute CF kids, no duties, but there was an older girl there with CF and she was sick. She spoke about CF and they took us out of the room, but not before I knew she was saying something scary. A few years later she died and the three of us took on speech duties.

First Nebulizer Treatment: Early, early, early. I don't remember how old I was, but I sure remember being strapped into that mask-like contraption.

First Time CF Scared the Sh*t out of Me: When my two CF friends were young, they ended up in the hospital for tune-ups, during which they had some sort of drug reaction. Both of them were in the hospital, and both were given something like a 75% chance of dying. I went and visited them and sat with them (I had to wear all these isolation protocol stuff) and I was so scared. This was also the first time I realized CF might take my close friends. It didn'[t, thankfully.

First Time Using Pulmozyme, TOBI, etc: I was lucky enough to get on these drugs right when they came out (my center was huge on new developments). I remember the old school tobra before the TOBI.

First Hospitalization: Aside from the 6 weeks thing, I actually wasn't put back in until I hit 16. I did home IVs once before that, but at age 16 I started going in at least once, mostly twice, a year. The good thing about all this is that I never went to the hospital back when cystics shared rooms, although we were all on the same ward, which we roamed freely with masks on in the hall, and shared a computer.

First Time I Realized CF Could be Terrible, but Doesn't Have to be Limiting: The room next to me had an older cystic named G, who was almost always in the hospital when I was and we almost always got the same rooms. He sounded SICK. But G went to college, at a great school in Colorado several hours from his family home in Denver. I didn't talk to him much because he was always so focused on getting better and I was focused on getting OUT, but I do remember thinking that it was awesome how he just kept going with his life even though he was so sick. And I also remember hearing when he died, and being really happy for him that he got his degree. It must have mattered so much to him. RIP, my first CF role model.

First Time I "Switched" CF Docs: 2000, when I went to Atlanta for college. Emory was great, but the CF center didn't work out so well for me (probably because I was too stubborn to actually go) so I ended up traveling back to Denver for clinic and hospitalizations.

First Time CF Felt *REALLY* Awkward: At college I knew two other people with CF. One was a year older than me and one two years younger. The younger one was extremely healthy, had never done IVs, didn't really do airway clearance, etc. The older one I didn't know much about until he died, very suddenly. I remember learning that he died from other people, and them being totally unwilling to even say the words "cystic fibrosis." Instead I think they told me it was "illness-related but unexpected" and sort of looked away. I remember this was ridiculous. What were they sheltering me from?

First Time I Went to an Adult Clinic: 22 years old, having just moved to NYC for law school and realizing that no way was I flying from NYC to Denver to see my old pediatric doc. I love love love my CF doc and clinic here. I can't say enough good things about them.

First Time CF Really, REALLY Sucked: I graduated college sick, probably because I'd worked myself to death on my thesis, but I had LOTS of plans, including flying out to CA and driving back to CO with my sweetheart at the time, who was in school in Berkley at the time. So I got out there, and we planned our route, which included a much-anticipated stopover in Vegas -- first time for me since turning 21! -- and started to drive. Well, by the time we hit Vegas I could barely walk, much less enjoy the fun. We tried to go out for yummy dinners -- I had no appetite. We tried to go to Cirque du Soleil -- I had a fever and chills and spent the whole performance hoping not to throw up. We tried to walk the strip -- um, yeah, NOT happening. It was awful. By the time we reached Denver I was sick as a dog, had to be put into the hospital immediately, and spent the next two weeks wondering why I ever let myself go that long.

First (and Many) Time(s) CF Made Me Feel On Top of the World: When I suddenly realized (a little late in the game, I'll admit) that there was a way to keep living AND be totally on top of my health. Standing at the podium at the Celebrity Ski event, knowing that we just raised over $2 million for a cure and looking out at a sea of faces of people who really cared. When I graduated from law school and knew just how much I had overcome to live that moment. When I went to Greece and climbed the Acropolis and Delphi and Delos and all sorts of ancient hilly monuments with no good cystic resting points and knew that I was still in pretty darn good shape, CF or no CF. When I cart my O2 down to the exercise room in my building, hop up on the treadmill, and start busting my ass at a 3.5 MPH hill walk and know that everyone else in there is surprised at the young woman with the obvious health issue still making the effort. And of course, when I think on all the AMAZING cystics who are fighting incredible battles to stay healthy, or who fought their battles with such strength and grace, and when I look at how so many of us fight with everything we've got not to let this disease keep us down even when it seems to be winning and the fighting seems almost absurd. Sappy as it sounds, that's when I'm most proud to be a cystic myself.

Monday, July 27, 2009

Welcome to the Hotel Presbyterian

Such a lovely place, although I'm hoping I can both check out AND leave -- preferably by the end of the week.

Yeah, I landed back on my ass in 9 Hudson South (actually the best ward going over here, with a menu for ordering dinner, private rooms/bath, and guest internet). The twist is that we don't actually think this one's all about the lung infection, or at least 2 1/2 weeks of solid 101 degree fevers daily says this isn't your average pneumonia. We're thinking viral, but they're not ruling out an infection that we're just not hitting yet . . . including the ever-dreaded port infection. Fingers crossed it's not that, although other contenders include such fun little visitors as Lyme Disease or a relapse of Mononucleosis.

I'm just hoping that whatever it is, it starts to resolve itself FAST.

They've already switch my abx from Merrem to Imipenem, which they did over the weekend at home and may already be making somewhat a difference. Also my potassium levels are climbing, which is wonderful. So basically I'm in here, according to my doctor, "for a couple of days" (famous last words!) to get some tests run and hopefully figure this thing out for good. It's been bothering me for waaaay too long.

I didn't even put up my usual crazy stubborn (um, I mean, polite and well-articulated) fight to stay out of the joint this time. Sometimes you just know you're headed for those plastic sheets, and the best that you can do is just grit your teeth and bring your own comforter. As my blogger cyster Cystic Gal might quote, "you got to know when to hold 'em, know when to fold 'em". . . and hope to God that your doctors know when to let you walk away ;)

Friday, July 24, 2009

Turkey (with a Side of Banana)

Okay, so I tried really hard to make the whole "if I don't tell anyone I'm back from Turkey then I won't actually have to BE back from Turkey" theory work. I mean, I tried really, really hard. Because we all know that if you don't blog it, it doesn't happen, right? Maybe? Pretty please?


Alright fine, I'm home. Actually I got back on the 10th, so I've been home for a while. And I know that officially makes me, like, the worst blogger ever, but I swear I haven't just been sitting around the house neglecting you guys. In fact, I've made some major changes:

1) I left my job.

Yep, no joke, I finally bit the bullet and admitted that being on call 24/7 in a high-stress law firm isn't the best career choice for me at this point in my life, despite the fact that I love it. So I took disability, but not before I lined up a volunteer position 3 days a week for 5 hours a day at a great non-profit, where I can use my legal skills and hopefully develop some new talents and actually work for a cause I believe in. It was a really hard change, but I'm not second guessing my decision. It was time, and this is right, and I'm actually kind of proud of myself for taking the initiative and finding a new way to stay challenged and occupied that still gives me the time and schedule I need to take care of my health. Okay, okay, enough tooting my own horn, but I have to feel positive about this on some level, or else it just comes down to the fact that I left a job I love. Not that I'm trying to be a Pollyanna about the whole thing, but it's as good a transition as I could have hoped for. Stay tuned for more updates and possible new developments . . . because you can never have too many graduate degrees!

2) I am due to be officially listed for transplant in mid August, after we cover a couple more bumps in the road.

Not much to say about that right now, but it's a little overwhelming. Some of my doctors have theorized that I could be transplanted pretty quickly b/c of my height, so that's kind of crazy. New lungs by Christmas, anyone?

3) I'm back on IVs for the 5th time in 2009, as if to validate the above decisions.

Yeah, I know, these infections are out of control. Believe me, you're preaching to the choir here! I came back from Turkey after all that fun and exercise with fevers and a cruddy sounding left lung, so it was time to go back on. The good news is that I'm doing it all from home, and although my fevers haven't entirely gone away yet, I still feel better than I did when I first got back. The other big development here is that I've made my peace (as much as I can or ever will, I'm sure) with the fact that these continued infections aren't caused by something I'm doing "wrong." And believe it or not, that's actually a scary concept for me, because I'd love to believe that there's something I'm just missing somehow that would be a quick fix. But there's not, or if there is I can't keep killing myself mentally trying to figure it out right now, so I'm just going to keep pushing back as hard as I can. And try and cut myself a little slack.

4) Speaking of quick fixes, remember all those weird symptoms and heart arrhythmias I was having before Turkey (and to some extent during Turkey, and after Turkey)? Well, drumroll please . . .

Low. Potassium.

Yeah, potassium. As in, that stuff in bananas. As in, an electrolyte that CFers are naturally prone to get a little low on from time to time. And this was apparently my time. Big time.

I'm in the process of getting the stuff back up to normal right now, taking these GIGANTIC pills to supplement the potassium in my diet and eating so many bananas there's a real danger of a shortage in lower Manhattan. (Sidenote: you know when a CFer calls the pills huge that they are truly HUGE. I swallow 6 MT-20s with every meal no problem and I can barely take one of these things without gagging. I kid you not.)

And that's about all the change I can handle writing about right now, although it is not (surprisingly) a complete list of everything going on in my life right now. Then again, if I could fit a complete list of my life into a single blog entry I'd probably be pretty boring. And I promise to be back soon with some more updates and maybe even some pics from Turkey if I can get around to uploading them all. I promise they're worth waiting for though, particularly the one of my mom and the spitting camel.

In the meantime, I suggest everyone out there eat a banana. Or five.

Sunday, July 5, 2009

Ten Things I've Done in Turkey

1) Taken my first hot-air balloon ride (for which I had to conquer what can only be described as a paralyzing and long-standing fear of heights, but from which I did not, surprisingly, vomit).
2) Ridden in a tourist van among the caves of Cappadocia while wearing oxygen -- it's high up there!
3) Hiked said caves of Cappadocia without the O2 (it stayed in the car for use as a blissful reprieve after the exertion).
4) Purchased a Turkish nebulizer.
5) Successfully operated my vest, eflow, and said Turkish nebulizer machine, as well as my portable O2 concentrator, on a 4-day gulet cruise of the Aegean Sea.
6) Sea kayaked and swam in the turquoise coast.
7) Blown a fuse in an Ephesus hotel with said (annoying) Turkish nebulizer machine.
8) Seen the house where the Virgin Mary supposedly spent the last few years of her lives and drunk from the apparently healing waters of her Holy Spring at the site.
9) Looked out over what our Turkish guide appropriately called a "matchless view" of the Turkish countryside.
10) Asked for salt to add to almost every meal, hopefully avoiding offending the Turks with my "matchless" charm ;)

Tomorrow we leave for Istanbul and the last leg of our amazing adventure over here. I've been to Istanbul before, actually, but there is something to be said for traveling with parents and family friends instead of broke law students. Definitely loving every second, but don't worry, I promise to be back soon for more "matchless" blogging and a whole lot of new stories!