One Day in April

April 15, 2009: I'm pretty sure most people think of today as tax day. (Or at least most American people anyway . . . some Italians probably know it as da Vinci's birthday, and the Germans might remember it as the day Bergen-Belsen was liberated.) It's also the day major league baseball was integrated, and the anniversary of insulin hitting the market for all you diabetics. For some political activists today is a major protest day and for one very lucky portugese water dog it's his first full day as official "first puppy." It's the day after my dog got a really really bad haircut that caused my mom and I to nickname him Sammy the Rat (his self-esteem will probably never recover) and it's the first night I have plans with friends since getting sick this last time. Oh yeah, and it's exactly one week since I last set foot in my office.

But hey, who's counting?

Last night I decided I was over being sick. I was being kinda whiney and pitiful and I just got sick of it (pun intended). So this morning I got up, ate breakfast, tackled my ridiculous morning IV schedule, and moved my ass out the door to the gym. I didn't do too badly, honestly. 25 minutes on the treadmill with an incline of 8, and I went 1.8 miles. I would have gone faster, but I'm trying really hard to keep my heartrate in the healthy cardio range for me (145-160) without letting it go up into the "holy shit calorie burning" range (165+) that my doctor wants me to avoid. So I kept myself on 2.5 liters and forced myself to slow to a walk everytime it threatened to go too high. Then I cooled off at a walk for 3 minutes to take my distance up to an even 2 miles. Anyway, I'm no Lance Armstrong obviously, but I'd say 2 miles in the middle of an exacerbation isn't doing too badly. And when I talked to my tx doctor the other day he told me that I was strong enough that I wouldn't need any rehab pre-surgery, which I took as kind of a gold star for my homework. I'm probably being a little bit overly self-congratulatory here, but I'm okay with that right now.

I'm not so okay with not working. That's gonna be a problem. There are all these factors to consider right now, and I'm feeling a little overwhelmed with having to make these choices. I know I'm lucky to have them, but it's still a lot to wrap my head around at 27. I'm not going to waste space boring everyone with this again, but yeah - it's still on my mind.

Last night I went to town looking up every single piece of information I could on my new little friend achromobacter xylosoxidans (which I have not-so affectionately termed "achromobastard"). It looks like it's another pain in the ass to deal with, but not associated with any significant prognosis changes for most CFers. And it's not a counterindication to transplant, apparently, which is huge, especially since the first thing I found on wiki simply said: "The Achromobacter are a genus of bacteria, included in the order Burkholderiales."

Yeah, I think my heart pretty much stopped when I read that initially. Apparently I'm easily freaked out. But I'm slowly trying to figure this one out, and slowly trying to figure work out, and slowly getting back into exercise, and probably slowly going insane in the process. But that's nothing new anyway ;)

I see my doctor tomorrow in the brand new CF center at Columbia Pres. I'm hoping I get to blow PFTs - I blew a 35% after 5 weeks last IV course, but never did them again after the full 6 weeks, and then I didn't do them at the start of this infection b/c my doctor doesn't really see the point of freaking me out with low numbers when we know already there's an underlying infection and we have to treat it. Have I mentioned that I think she's wonderful?

Anyway, here's hoping I can post again tomorrow with numbers back up to baseline, or at least pretty close. And maybe I can kick this achromobastard to the curb for good and not have it become another chronic aspect to this whole CF thing. Because if I'm really honest, I think I'm due for a break at this point.

Seriously.

Shaken, Not Stirred

Okay first off, can I just say that wow, it's been an intense couple of days? Seriously, I don't know what I would have done if my mother hadn't flown in from CO to help me out for a while. Funny how sometimes you just need a mom around, right?

I got out of the hospital on Saturday right after CPT, which was awesome. The RT staff there is amazing - they always make sure to hit up all the CFers by noon at the latest, since in the words of one great RT, they know we need it to be comfortable. The bonus to this is that we get discharged earlier as well. So I was on my way home by noon, and not a moment too soon. The only bad thing being that the nurse or pharmacy or someone f-ed up and gave me parkinson's medication instead of my prednisone. I looked at the pills, which were round and slightly off white rather than round and white, and immediately questioned it. Thank god for my professional patient status, huh? Anyway, for future reference and to anyone who cares: 50 mg carbidopa does not equal 40 mg prednisone. Duh.

So I was discharged on a lovely cocktail of imipenem every 6 hours, aztreonam every 8 hours, and tobra every 24 hours. The aztreonam and tobra are via intermate, so no problems there. But the imipenem? You guessed it...gravity drip! And not only gravity drip, but the thing has to be mixed right before delivery. So my cocktail quite literally has to be "shaken" every 6 hours before I can serve it to my greedy little lungs. Bastards - they're always so demanding!

And some of you might remember the whole fire and flood post from Tuesday? (Sidenote: how biblical does that sound for holy week? Sheesh!) Well yeah, turns out there are still some major de-humidifier fans going full blast 24 hours a day in my apartment to help ensure that there's no mold growth. For those wondering, obviously I am not being complacent about this - I have inspectors set up to come multiple times and I will not rest until I'm positive there's no mold in my gorgeous new apartment. But in the meantime, Sammy and I have moved into the Millennium Hilton by the WTC site. Lovely. And of course my mom has as well, so that she can help out with the infusion schedule from hell. In other words, I'm living in a hotel four blooks from my apartment, with my puppy, and my mother, and my gravity drip. All of which is just a little overwhelming, to say the least. Thankfully: 1) the hotel was sweet enough to upgrade us to a king suite when we laughingly told them the whole story at check-in (gotta laugh, there's no other way to deal with this sort of ridiculousness), and 2) the insurance for the genius who started the fire is going to indemnify us the hotel room, as well as all other damage-related expenses.

And then, to top it all off, Sunday was obviously Easter, and of course my sister and I had invited several of our "orphan" NYer friends to Easter brunch at my place - "orphan" meaning their families live too far away to visit for a weekend. My mom, my sister, and I talked and decided we would prefer not to let fire, flood, and plague (told you it was biblical!) keep us from celebrating, so we ordered a honey baked ham and all the trimmings from Whole Foods, moved all the fans into the hallway, cleaned up the place (they cleaned, I rested), and hosted anyway. So. Much. Fun. No hospital, no nurses, no beeping: just family, friends, wine, good food, and the ever-present gravity drip ;) Afterwards we watched America's Next Top Model marathon and finished the wine until we had walk back through the city lights to our king suite. Tough life I have, right?

My only other news is that I officially took 1 month short-term disability from work. Obviously for these next 2 weeks with this IV schedule I can't be at the office, and afterwards my doctor and I both agree that I need time to rest, relax, and figure out exactly how I need to move forward. I have amazing benefits at work and am lucky enough in that department that this isn't a financial decision - and I spent a few weepy moments with my mom last night wondering exactly how I got lucky enough for that to be the case. For now I have a couple of projects I am going to (gently) work on for the next few weeks as I try to wrap my health and my mind around where things are headed.

Honestly I'm not happy about not being able to work, even temporarily. And I'm scared shitless about where my disease is heading. I'm also overwhelmed with how lucky I am to love my doctor, have family who drops everything and travels across the country to help me, friends who see me at my worst in the hospital and still show up to Easter dinner even as I lie drooping on the couch, and a job that will leave me with everything I need insurance and income wise regardless of whether I am physically able to work or not. I don't need to be told how blessed I am and how rare so much of that is. It's a weird balance, isn't it? I mean how much energy can you spend being sad when so much is being given to you? But by the same token, how much of a merry sunshine can anyone honestly be in the face of losing so much? And it is a loss, I'm not going to sugarcoat that side of it. I don't think I'd be doing myself or anyone else any favors by pretending I was thrilled with the situation.

So I'm out of the hospital, but on a bitch of an IV schedule. I can't live in my apartment, but I have a gorgeous hotel suite with people and puppies I love. I had a great Easter, but I felt sick. I have to take time off work, but I have a great support system and amazing benefits. I feel better, but I'm on my third round of IVs for 2009 alone. I have a lot of drive to get better and stay healthy, but I know doing so might mean giving up some things I love - plus I'm up against a killer disease.

I feel kinda shaken, just not entirely stirred.

Puzzles, Anyone?

Alright, just in case anyone out there is bored (or suffering prednisone-induced insomnia like me!), here's a CF-themed puzzle to keep you busy! Find the CF words listed below in the puzzle. They might be forwards, backwards, diagonal - pretty much any way possible. Just a hint, it's probably easier if you print the puzzle and go from there.

(PS: Since it's technically Saturday, guess who gets to go HOME today?? Woot, woot!)

T E C R C H D C T T P L E E S
R X T F E N O H I R R V J S E
A E F R A Z E S E N I O S I S
N R C S E V I D P T I E P A O
S C E Y E A N L C I D L O R R
P I O S S I T A U I T R C D E
L S T U S T O M R B P A D N V
A E A O G R I T E I E I L U I
N R N W P H S C C N B N I F F
T E L A N T I B I O T I C S Y
R E S E A R C H T F P S P M T
H O P E D N U O F E R U C U X
E S R U N R E T T U L F W C I
H G C E N Z Y M E S A L T U S
D O C T O R E H T A E R B S E


ANTIBIOTICS
BREATHE
CFF
CIPRO
CLINIC
COUGH
CURE FOUND
CYSTIC
DNASE
DOCTOR
ENZYMES
EXERCISE
FLUTTER
FUNDRAISE
GREAT STRIDES
HOPE
HOSPITAL
MUCUS
NEBULIZER
NURSE
PFT
PORT
PREDNISONE
PROACTIVE
RESEARCH
SALT
SIXTYFIVE ROSES
THE VEST
TOBI
TRANSPLANT
TREATMENTS

27 Years, 4 Months, 14 Days

. . . and counting.

Okay so I'm not going home today. The doctor (who happens to be my doctor's fraternal twin sister and another pulmonologist at this hospital) came to see me pretty early this morning. I had just woken up and had yet to do xopenex or my first airway clearance, so needless to say my O2 sats probably weren't as high as they could have been. I was really hoping to break out today, but honestly I guess one more day might actually be in my best interest (cringe).

I did get to leave my room for a walk today. Because of the whole CF = contact isolation thing, I'm not allowed to leave my room alone. But the PT came and actually had time to stay and take me for a walk after my CPT, so that was HUGE. Getting out of the room was totally key to my sanity, and getting back into some sort of exercise routine as fast as possible is definitely key to my O2 saturations coming back up. I begged the PT to get me an exercise bike if possible, but at the very least she left instructions with the nurse's station that I was to be allowed to take walks on the ward as long as I gowned first and took proper hand washing precautions. So I guess I'm about as free as anyone ever is on lock-up isolation.

So yeah, the walk. We did a solid 15 minutes at a nice brisk pace. I would have liked to go longer, but she had to leave (and she said SHE was tired, lol). I was just so damn happy to be moving I feel like I could have gone for miles! We did bring the portable O2 tank, and she started me out on 2 liters because we had just done CPT and so I was already a little "warmed up", so to speak. After a couple of laps, my O2 was at 90 and occasionally 89. So she cranked it up to 3.5 liters and we kept going. Well, I felt great, I was moving fast AND talking the whole time, but my O2 stayed exactly the same. Finally, it dropped to 88 after 6 laps or so and she insisted we stop for a sec to rest. So we did, and she looks down at the tank, and suddenly she covers her mouth with her hand and gasps. Turns out she had connected the tubing to the WRONG nozzle -- it was actually connected to the one they use to drain the tank. So I had been statting at 90-89 for 6 laps, while talking, at a pace she had already called "impressive" on room air! I was definitely pleased, and she made a big note of that on her little recording sheet. Then she turned it on for real at 1 liter and we went for another 5 laps with my O2 at 92. Woo-hoo!

She told me I could go out sans O2 for my afternoon walk(s) but that I had to promise to pace myself and stop after 5 laps max. She couldn't leave me a pulseox so obviously I'll play by the rules since I can't self-monitor. No sense pushing it too hard, and again - my new goal is to be aggressive AND know my limits. I'm naturally kind of a stubborn little brat (or another word starting with B . . .) so I think I need to start recognizing the difference between good pushing and bad pushing. And I appreciate the offers for a good kick in the ass from some of you, but you know, it's tough sometimes.

I miss my puppy. I want to go home. Above all, I am one DIRTY little cystic right now (yesterday I had salt crystals fall out of my hair from all the sweat coupled with the no showering rule). I still hate IVs and I still feel frustrated beyond belief that I got sick again so soon and that my sats are taking so long to bounce back. None of that has changed. But I guess you learn to see victories wherever they start to hide after a while. Kind of a "one small step for Piper, one gigantic step for Piper's lungs" type of thing.

It just so happens those steps are on the 9th floor of Columbia Presbyterian Hospital for now. Sigh.

Breathe for Me, Baby

Update: Day 3

• Number of IV antibiotics currently prescribed: 3
• Number of IVs discontinued today: 1 (bye bye, solumedrol!)
• Number of unfortunate talks with my doctor about abhorent feeding tube suggestion: 1
• Number of "Boost Plus" drinks subsequently consumed after said conversation: 6 (!!!)
  
• Number of hours sleep possible to obtain at a hospital: one of life's mysteries, but low
• Number of stupid questions (e.g., "how long have you had CF?"): 3 and counting
• Number of snarky answers (e.g., "27 years, 4 months, 13 days"): 3 and counting
• Number of blood draws: don't ask

and finally . . .

• Number (percentage) of O2 saturation on ROOM AIR tonight: 92% (!!!!!!)

My doctor made it very clear to me today that the only thing holding me here in lock up (and away from my puppy!) is my unstable O2 situation. She's going to be off tomorrow and Saturday but back on Sunday, so she tenatively wrote discharge orders for Saturday, BUT she put in the orders that if my O2 is consistently above 90 on room air by tomorrow afternoon, I can leave. And likewise if it is not by Saturday afternoon, I have to stay. Sounds like a reasonable compromise.

I am SO psyched about the possibility of early jailbreak. Sammy! Showers! My own bed! Sammy! Good food! Easter! Sammy! And yes, I admit I'm obsessed with my puppy. So sue me. No, really, please try it ;)

My friends have been awesome - I've had visitors constantly and a steady stream of non-crappy outside world food. Which is good because, as I mentioned above, my weight is about to become my new battlefield. I have to have a BMI of over 19 by the end of summer/early fall to avoid the dreaded tube. And considering I'm currently 18-18.5 on a really good day, that might be an interesting challenge. Although honestly, I respond really well to ridiculous goals, so here's hoping.

The other update is that I'm officially going to take some short term disability from work, but only for a few weeks, just to sort out this current infection and hopefully get things in a more stable position. And then I'm going to work out how I can stay on and be a productive member of the firm on terms that actually work with my health. I'm not worried at all about my law firm's role in this - they've proven themselves more than understanding and very wonderful in the face of a crappy situation - but the challenge is just going to be me. I need to set boundaries, I need to stick to them, and I need to start realizing that slowing down is not giving in to CF; it's another way of fighting it and NOT letting it take control completely. So I know I'm a bit thick-headed that it's taken me 27 years (and counting) to figure that out, but I swear I'm almost there. Almost.

I am hoping that if I'm not completely focused on work and health that I'll have more time/energy for the rest of my life and won't have to kill myself trying to pack that all into the weekends. So maybe this will be a way for me to take back part of my life, rather losing any more. Maybe.

But for tonight: 92% saturations on room air! Come on baby, breathe for me ;)

Really? Seriously? Honestly?!

Today may very well go down in history as the craziest, most ridiculous day of my entire life. I'll tell you all about it, but first I need to know: do you want the bad news, the crazy news, or the fucking unbelievable news?

The Bad News:

I'm sick again. Yuck. Just some gross viral crud that managed to worm its way into my freshly IV'd lungs despite my best efforts. So now I'm writing this from my room at Columbia Presbyterian Hospital, which I didn't make it to until 6:30 pm, because . . .

The Crazy News:

There was a fire in my apartment building. No joke. As in, some genius had a timed light (in an apartment . . . will someone explain that to me, please?) and it was too close to the drapes. So when it came on, the apartment owner wasn't home and the drapes got too hot and voila. Half the NYFD showed up to my apartment building, bells and whistles clanging, and I had to evacuate down 18 stories of STAIRS, without O2 (not in the habit of wearing O2 near open flames) while CARRYING my 20 lbs puppy. I had to carry the puppy because he's an apartment puppy and he doesn't "do" stairs. Brilliant.

The Really Fucking Unbelievable News:

So this genius with the timed light? Yeah, turns out he lived DIRECTLY above me. As in, one floor up, same floorplan, literally right on top of me. Which means that when his apartment caught fire, his sprinklers turned on, and when his sprinklers turned on (and he wasn't home), they created 4 inches of standing water on his floors. And that 4 inches of standing water had nowhere to go but down. Literally. Straight down, and into MY apartment.

My living room and both bedrooms had huge floods in them when I finally got back up to my apartment (suffice it to say I had to wait until the elevators were back on line to get up to the 18th floor). Huge flood. On my hardwood floors. And oh yeah, did I mention I'm sick? Like, 2.5 liters of O2 while resting, in the hospital style sick?

The Silver Lining:

Thankfully, I have an amazng woman who helps me out with all the little parts of my life that CF makes difficult, including cleaning and shopping one day a week. Well, that day just happens to be Tuesday, which means she was around today and immediately sprang into action. She was amazing - went around cleaning up all the water and treating the wood to minimize the damage. Luckily there is insurance to cover whatever work does need to be done to the wood floors, but right now I think it probably won't be that bad. Thanks ONLY to Bella, who I am now convinced is some sort of guardian angel. With her help I got packed, got out of the apartment, and she's staying with Sammy until someone else can get there. Wow.

Part II of the silver lining is that my doctor actually doesn't think I'll need to be in that long. She said she anticipated a short stay (maybe just a couple of days) and that this is probably just a virus gone awry.

So yes, it was a terrible day, although in retrospect it all seems more amusing than anything. And yes I am clearly going to have to make some big decisions sometime soon, but I think the first route is going to be trying some short term solutions while we work on longer term options. Which means I'm not quite as hysterical as I was earlier today.

And that's the best news of all.

Self, Shout-Outs, and Sammy (Of course!)

Hi guys!

So first off, a couple of people have asked me lately about the arm port and how much it "shows" when it's not accessed. I thought I'd share a couple of pictures since right now seems to be the first time in FOREVER that I can actually showcase the darn thing without a needle sticking out of it. Fun, fun. Anyway, here is is, for your viewing pleasure. (And for those of you who might want to see it accessed, well, I have photos of that in my archives from 2008.)

1) Close up of the port site (keep in mind that it looks angry right now because my last IVs just ended a week or so ago):

2) View of my arm normally (notice that it's more or less invisible, unless you're looking REALLY hard for the tiny bump):

3) Me, just so everyone trusts that this really is my arm:

4) Sammybear, because really, why not?


Bonus points if you can spot the O2 tanks in that last shot, btw ;)

In other news, I'm changing up my routine a bit. Mainly I've started separating Dnase and HTS, which isn't thrilling since it makes the third treatment a requirement instead of optional. Oh well, I guess I knew I should be doing three anyways. And I've also started a trial run on the PharmaNAC fizzy tabs. I ordered a month's supply (assuming I do 1 tab, twice a day, which is what my doc recommended). I doubt I'll see much change in a month, so I'll probably need to extend my testing time. I've know some people who swear by this stuff and then others who claim they saw no change even after a year. But at this point I figure I need to keep trying everything I can. I'm not looking for a miracle cure (although if anyone's offering one, I'll take it!) but I need all the help I can get just to break this infection cycle. Blah.

And my other big news...(drumroll)...I gained 2 pounds! This might not sound like much, but considering my doctor has been encouraging me to exercise LESS just so I can preserve more calories, 2 pounds is a breakthrough! And I'm still hitting the cardio - so I managed to gain AND stay on top of my game exercise wise. Very proud of that.

I just realized this is a very self-congratulatory post. Which frankly I'm okay with, because we need those every so often. But before I go too far overboard with the me me me thing, can I just say how much some of my fellow CFers have been blowing me away lately? Seriously, I know one who has been super sick and continues to reach outside of herself to everyone else and leave encouraging comments on my blog (and others) even though I know she's going through a rough time with lots of changes, one who has been going through a hellish road with sinus surgery and still sounds less whiney than I ever do, one who lost a dear friend and decided to change it into a beautiful project to help other cystics, one who is currently on IVs and has some other serious health complications but never seems to let it get her down, one who brought her FEV1 up from the start of transplant range all the way up to over 50%, one who selflessly allowed his amazing wife to share his transplant story start to finish for the benefit of others, one who is participating in a study of an new inhaled version of an antibiotic to help all of us, one who posts amazing articles and helpful info to her blog daily, one who was brave enough to post a great glimpse into the "raw" side of CF on her blog last week, one who powers on in the face of huge obstacles from his health and from outside sources, one who I recently corresponded with who is currently putting us all to shame with his amazing exercise routine (and putting me personally to shame with his awesome attitude), and several -- both pre- and post-transplant -- who blow me away with their ability to be amazing mamas and awesome people. This is in addition to the countless other cystics I know who are just plain unbelievable. Seriously, I can't imagine a more selfless, inspiring group.

I don't mean to sound sappy, but honestly I really am in awe of these people. Especially because they're not afraid to admit, collectively, that CF sucks, that it's hard work, and that acknowledging that does not in any way make you less of a fighter. And I'm really proud to count myself among their ranks.