Wednesday, June 24, 2009

Up Up and Away

Two days ago, I received a letter from my doctor by fax. This in and of itself was a bit of an ordeal because, despite the fact that I hold at least a couple of degrees and work daily in a fairly high-tech law office, I myself am quite literally the single least technologically savvy person I know. Machines at my law school computer lab were known to randomly crash the moment I entered the room, preferring to sacrifice themselves in some sort of ritual suicide rather than suffer certain abuse at my ill-trained hands. My secretary has officially banned me from trying to do anything other than print or make the ocassional copy, correctly guessing that anything beyond that is simply out of my league. Most people buy an iphone for the cool apps, but I'm lucky if I can get mine to place an outgoing call. Even my puppy seems to have gotten into the "death to technology" act -- the other day he wandered into my bedroom with something in his mouth, which later turned out to be my blackberry. Sigh.

Anyway, needless to say I don't keep a lot of superfluous technology lying around my apartment. No sophisiticated home office for me, thank you very much. I'm perfectly content with my wireless internet (expertly installed by someone decidedly more tech savvy) and my 2004 model Dell laptop. Sure, the computer is missing its "z" button (I have to copy and paste), and the touchpad mouse might not function at all anymore after one too many encounters with serious hypertonic saline spillage, but frankly I find it satisfying to have a computer that's ALMOST as technologically useless as I am. At least it can't judge me, right?

And that's it. No printer. No scanner. And definitely no fax machine.

So, long story short, I had to get this fax from my doctor sent to me at the aforementioned high-tech law office. And, like most tasks requiring any sort of contact with machines, this one was expertly handled for me by the unbelievable support staff, so that when I entered my office I found the letter neatly placed on the center of my desk.

"To Whom it May Concern: Piper is a patient of mine at the adult Cystic Fibrosis Center. Her daily treatment/medication regimen is as follows:
Hypertonic Saline 7% 3 times a day
Pulmozyme once a day
Xopenex vials for inhalation 3 times a day
Aztreonam Lysine vials for inhalation 3 times a day
Zithromax 500mg 3 times a week
Cipro 750mg twice a day
Prednisone 10mg once a day
Noxafil 3 times a day
Nexium 40mg once a day
Pancrease MT-20 with meals and snacks
Ativan 1mg as needed
Xopenex inhaler as needed
Source CF multivitamins
Vest Airway Clearance 3 times a day
Tama Flu (this one is a "just in case" addition)
Oxygen 4liters/min for air travel, sleep, and as needed"

Wow. Am I the only one who gets a little astonished looking at the routine we all go through daily? I mean, I know there are some variations here and there, but it's crazy for me to look at this and think that most adult, pre-tx CFers would have similar letters if they were going to Turkey.

Yep, I'm going to Turkey. On vacation, with my family. For two weeks. Tomorrow. And much as I would just like to frame this letter and hang it on my wall as some sort of cystic badge of honor, I actually think I might need it to convince the Turkish authorities that I am not either 1) an international drug-smuggler, or 2) planning on taking up permanent residence in the country and opening a pharmacy.

I'm so excited about this trip, honestly. It's actually the first real "vacation" I've taken since joining my firm, and it couldn't come at a better time in terms of needing to destress and decompress a little. I discontinue my IVs today, I have all my prescriptions filled and ready to go, God willing this anxiety will stay under control with the Ativan, and I'm all set! I mean sure, I'll be traveling with 1 Vest, 2 types of compressors, a portable O2 concentrator, 50 disposable nebs cups (sterlizing in Turkey seems like a pain, although I'll have to find a way for the eflow nebs), and enough medicine to stock a small Wallgreens, but hey, we've all been there, done that, right? And I'm excited that even in the midst of all this CF infection crud and transplant madness that I can still manage to do something this exciting with my actual life. I think it's a huge credit to my incredible medical team and their decision months ago to be as aggressive as possible to make this all work out. I'm so so grateful.

I may be able to blog a little from Turkey, but at the very least I'll take tons of pics and share when I get back. I'm thinking neb pics in Istanbul, or maybe Vesting in Cappadocia. So tell me, where has YOUR CF been lately? ;)

Sunday, June 21, 2009

Disaster Zones

Personally, I've never been through a hurricane (growing up in a landlocked state kind of limits that type of experience, not that I'm complaining) . . . I've never had to run for cover across an open field while being pursued by a particularly angry-looking twister cloud, although I did have a drive across Kansas where I had to park my car under an overpass to avoid the grapenut-sized hail and sat, shivering, listening to the radio announcer talk about how "more people are killed each year by thunderstorms in Kansas than any other natural disaster" . . . And, much as I like to think I live my life a little dangerously, I've never singlehandedly sailed a weather-beaten ship through tsunami-style waves.

I mean, don't get me wrong, it's not so much that I've purposefully AVOIDED these things, it's just that the option of doing them just hasn't ever really come up. These are, simply put, things that in my 27 years I just have not experienced.

But I have to be honest, after the past month or so, which shall hereby be not-so-affectionately known as Angstapalooza 2009 (aka The Great Freak Out), I have to say that I kind of FEEL like I've done them, or at least survived my own personal version. Because I have to be real about this, NOTHING that I have encountered thus far in terms of my CF has been as difficult to deal with as these panic attacks were. And yes, I will optimistically use the past tense here.

Let me put this in some sort of context, because I know I haven't been awesome about updating my blog lately, and hopefully this will help explain some of that:
  • Something went wrong during the heart cath. We're still not sure what it was, although we've elminated a possible allergic reaction to lidocaine as the culprit. I don't want to pass blame when the details are so uncertain, so let me just say this: it was without a doubt the single scariest moment I have had during a medical procedure (knock on wood)
  • A week or so after the heart cath, because of some lingering effects of the procedure, I had a panic attack. At the time everyone thought this was an isolated event brought on by yet another very minor medical event.
  • My heart is prone to arrhythmias -- this has been known to all of us for a while now -- and I started to get a CF infection, which typically intensifies the arrhythmia by just throwing my body for a loop.
  • Apparently, at least in my case, extremely traumatic event involving my heart + lingering effects of trauma in my neck + heart arrhythmia + poor breathing = massive breakdown.
Yeah, it wasn't exactly fun. I was doing more or less okay until I stupidly attempted to exercise in the middle of the arrhythmia/breathing madness and ended up in a complete state with my heart jumping around like rabbit on speed. Honestly, I even managed to freak out the ER staff, which eventually led to my being treated by a cardiologist (who declared the arrhythmias benign). Unfortunately, because there was an apparent physical issue (i.e., the arrythmias, which were very real) I didn't push too hard for anxiety treatment at first, which led to the third panic attack -- actually a series of several panic attacks strung together very quickly. NOT fun.

Anyway, they eventually put me on an SSRI and Ativan (the Ativan for short-term control, the SSRI for a more permanent solution). Unfortunately, the SSRI chosen didn't work at all for me, and I think I actually got MORE anxious on it (not to mention I was vomiting daily, feeling terrible, etc -- AND on IVs). Basically, it was pretty ridiculous. I was taking the Ativan to calm me down from the SSRI.

As soon as I realized the utter lameness of the situation (ahem, yesterday), I contacted my doctor and went off the SSRI. Keep in mind I was already on a dose LOWER than the recommended low dose, so that probably should have been a clue, since when we tried to increase the dose I didn't fare too well. But it took me a while to isolate the CF symptoms from the SSRI issues, and to be honest it's a lot of guesswork when you venture into that territory anyway. My poor doctor was fielding my calls almost daily and fitting me in for emergency clinic visits, but this was definitely a problem that just took a while to figure out.

So now? Well, I'm off the SSRI drug. I haven't felt much need for the Ativan today because I simply haven't been anxious, but I've been taking a very low dose (half a 1 mg pill) every 8 hours or so just because I didn't think I should try to stop everything cold turkey. But I plan to try and get off that withing the next couple of days as well. And it's possible we'll try another SSRI-type drug, but the thing is I'm honestly not sure I need it. I think this was a serious bout of trauma-induced anxiety, as opposed to generalized anxiety, and I think it would be wise to have a prescription on hand for a fast-acting anti-anxiety drug to use as needed. But I'm a little wary of the longer-term drugs at this point. I know many people who they have really helped, but my personal experience just wasn't positive.

So there you have it. As of a couple of days ago I've really tried to pick up the reins on my life (although I should add I fought through enough to go to work and exercise through all of this -- why, I have NO idea. I was more or less useless at work, but I was there!). I'm finally feeling like ME again, and not a moment too soon, since I have some pretty exciting news to announce here in the next few days.

Anyway, I wanted to give a HUGE shout out to all the cystics (and everyone else) out there who has come through anxiety. It might not be a class 4 hurricane, or a headline-making earthquake, but it can shake you up and leave you stranded, so I think you all deserve a LOT of credit. As for me, I'm just happy to be able to laugh and play with my puppy again. Seriously.

Thursday, June 18, 2009

The (Not So) Little Post that Wasn't

I just want to make something absolutely perfectly clear:

This is NOT an angry post.

Okay, fine, so I'm back on IVs again for a couple of weeks and sure, it's the fourth time this year. But hey, no problem, I'm not angry.

And of course being on IVs means I have an infection, which means I most definitely cannot go meet up with some awesome CF/post-tx people this weekend, even though I've had a standing invite and plan to do just that for a couple of months now. No biggie though . . . I'm not angry.

And you know, my transplant group has a few people who really like to complain about things like having to be on (gasp!) prednisone for a few weeks because of infection, or having to do TOBI every other month, or even having to walk on the treadmill ocassionally -- and they do so to the point where I'm starting to feel like I must be missing some sort of sympathy gene because I kind of want to turn to them and say "you know what, buddy, I get that it sucks. I get it because I've been on TOBI since it first came out (when I switched over from the original tobra mixture solution), and you know I also alternate it with another inhaled abx on the "off month" and several orals that I'm on all the time and I've been on prednisone non-stop since October and had IVs 6 times since then (with 3 hospitalizations). So don't look at me like I'm some sort of freak who doesn't understand your pain just because I'm not tethered to an O2 tank right now, because honestly I've had my f-ing lung disease SINCE I WAS BORN and I'm not actually the inexperienced one here. I promise."

So, um, yeah . . . I may not always be nice, but I'm also not angry. Really. Not at all.


Okay, so maybe I'm a little bit angry and frustrated right now. I've actually been avoiding blogging lately for a couple of reasons, the first being that it's been a little rough around here and I've been trying to sort it all out and desperately fighting to get back into the swing of my job. And the second being that I didn't really want to subject everyone out here to all my negative energy right now, because to be honest I've had quite a bit of it. I actually started scribbling down all my thoughts in one of those sketch book journals a couple of weeks ago and I've already filled 2/3 of it with pretty much everything weird and random floating through my mind right now about CF, life, and transplant. I'm thinking about calling it "Diary of a Mad Cystic Woman" (haha) and marketing it to some major movie studios . . . who thinks it would be a hit?

Honestly though, lung disease is incredibly frustrating. It's frustrating to get out of bed and ten minutes later feel your energy for the day already draining away. And it's frustrating to have to stop several times a day to "take stock" of how you feel (are you too tired? can you breathe? do you need an extra treatment? should you call your doctor?). It's frustrating to sometimes think about how little control we might actually have. And, above all, it's frustrating and heartbreakingly sad to watch others pass away or get sicker from your disease . . . people who deserve nothing but admiration for their fight and their strength in the face of what is, to be perfectly honest, an absolutely shitty situation.

One thing that is not advisable, however, is to let that frustration drive you into a frenzy. Because take it from me, it is NOT a good idea to spend your entire day thinking about all everything you SHOULD be doing: I should be eating again, it's been almost an hour; I should do another treatment; I should go to every single transplant education seminar and try to spend several hours a day researching supplements and somehow juggle my full-time job; I should quit even though it makes me happy and even my doctor now agrees that working is a positive force in my life, all things considered; I should exercise for 2 hours today instead of 1 and then I should drink 6 boost plusses right in a row to try and make up the extra calories and then fall asleep exhausted only to wake up 30 minutes later coughing and immediately vomit up what can only be described as a chocolate volcano of grossness.

Yeah, don't do that.

See, me and my 5 panic attacks and 2/3 of a journal full of crazy obsessive cystic ranting are here to tell you that when you go absolutely nuts trying to control your CF, your CF is likely to take control of you instead. Literally. And that, my friends, is the absolute worst side effect of lung disease ever. I'm not kidding.

So the good news is, I've moved from terrified/obsessed/manic to just a little bit angry and frustrated. And I think that pretty soon I'll be able to get back to my normal state, which is determined and cautiously optimistic. And while I still believe that I have a lot to prove, and I still want desperately to try and save these lungs as long as I can, but I'm also coming to accept that there is no such thing as the "perfect CFer," and if there is I can't be it anyway. Because I can't simultaneously leave my job that I love and went to 7 full years of college and grad school for AND say that CF isn't standing in the way of my dreams. I can't spend all day every day hooked up to my vest AND still have any sort of life at all. I can't keep pushing myself to exercise all the time AND follow the advice of my doctors, who say that I'm burning too many calories and pushing my HR up too high. And at the same time I can't work the crazy hours expected of NY lawyers AND keep up with my health. I can't go out and party all night with my other young city friends AND have the energy to move in the morning. I can't ignore my treatments or my routine just because I'm tired AND look myself in the mirror and say that I'm trying as hard as I can.

So in short, I can't please everyone, but I can make some smart choices and compromises and I can let myself admit that CF is not always all fun, games, and humerous blog posts.

And hopefully, after all that, I can actually regain a little of my sanity.

Tuesday, June 2, 2009

Be Still, My Heart

No, really, I mean it. Be still. Please? Pretty please? Just for a minute or something? Seriously Mr. Heart, I'll be your best friend!

(Disclaimer: the author of this blog would like to state for the record that the above is not actually a request for her heart to stop entirely. That would be a little "too still" for her taste. Instead she respectively requests that her heart simply stop its persistent new hobby of adding extra beats and/or skipping beats frequently. Because, much like Sampson's favorite passtime of sliding his bones under the couch and barking loudly until someone retrieves them for him, this new game is getting really old, really fast. Seriously.)

So yeah, I've got heart problems, and for once they don't involve one too many glasses of wine and a cute guy at some hip downtown bar. Although frankly the 8 million doctors appointments (note: actual number of doctors visited may vary) and two ER visits I've had in the past couple of weeks indicate that the wine/bar situation might actually be a less annoying kind of heartache. More dangerous, sure, but less annoying.

Long story short I have some unexplained arrhythmia in my heart that has been really persistent for the past week and a half. And finally, after approximately one hundred and two attempts at self-diagnosis ranging from "transplant anxiety" to "TOBI reaction" to "heart attack leading to imminent death" (with the last one being a personal fave), and the normal 2-4 day period of "toughing it out" that seems to be the unspoken code of all cystics everywhere, I actually managed to do something productive last night and take myself to the NYC ER for an EKG re: my CF. And let me just say: WTF?!

Seriously, if you've ever had a really strong urge to watch tons of people having the worst day of their lives, go to a New York City ER between the hours of 11 pm and 3:30 am. Yikes. I can honestly say I've seen funerals that were happier and more uplifting than that place, largely because most funerals I've been to have not been 90% populated by people coming down from drug highs and alcohol poisoning. And frankly I'm not a major fan of judging others, but the guy with the HIV who had just been discharged 1 day prior after a serious infection and then decided to do "just a line or two" of cocaine that morning to give himself a little "boost"? Um . . . yeah, he might need to experiment with some new coping methods. You know, just my opinion.

The good news is that nothing is seriously wrong with my heart. All the doctors agree that while this arrhythmia is oddly persistent and annoying, it's not really dangerous. My heart is actually quite healthy, in fact, unlike the rest of me. It's also quite strange and ridiculous, which fits right in with the rest of me, so at least we have that in common.

The saddest and most sobering part of the whole experience actually didn't involve me or my attention-hungry heart though. One of the residents came over to chat with me a little about CF right as I was being discharged, and she mentioned that she has a friend with a 6 year old daughter facing transplant from this stupid disease. As if that weren't tragedy enough, the little girl just contracted cepacia and has been removed from the list, apparently, so please keep them in your thoughts and send some good vibes out to them, wherever they are. In all seriousness, CF is a battle we can never stop fighting . . . not until every single child born with this disease has the chance to recognize his or her full potential. Every CFer I know is a fighter, in his or her own way, and my heart goes out to all of them. All of us.

And don't worry, that's a perfectly healthy offering on my part ;)