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? ;)


  1. I've said it a billion times, but you have such an amazing gift for writing. I love your humor.

    And the tag line "where has your CF been lately" is FABULOUS.

    you made my morning....

    Hugs to you. I know you're going to have a great trip - YOU DESERVE IT.


  2. Oh how very exciting Piper!! Have a great trip, stay safe and stay sane or not. I hope you have nothing but beautiful weather, beautiful people and beautiful monments.
    Take Care

  3. My CF is going to London on Monday :) Its only for 3 days so I won't need to drag half the pharmacy, but I still realise I'm taking a bunch of meds that could cause uproar should my backpack explode and decorate the lobby of the hotel.
    I get a short letter sumarising each appoinment after clinic, and it lists all the meds I take and infections/cf operations I've had and such. It's wierd when you look through the list.

    So, Turkey. Hope you have fun, can't wait for the pics! Xx

  4. How exciting!!! Have a ton of fun!

  5. That's awesome Piper. I've never been to Turkey but Mandi has and said that she loved it!

    Very funny and entertaining post, thanks!

    My CF was in China last January and just got back from Mexico. Have a ton of fun and live it up!!!!!


  6. Will you eat turkey in Turkey? :)

    Have lots and lots of fun!!!!!!!!!!!!!


  7. Have a wonderful trip!! Can't wait to see the photos!!

  8. RE: your comment on my blog...

    You're completely right. Thank you! Xx

  9. Piper - Have a wonderfully fabulous time overseas. You have such a way of making light of CF it just warms my heart. Take care girl!! ~Juliet

  10. Love your list! I have a reader in Turkey, maybe he will read YOUR blog too!!

  11. PS. My CF is on a cross country road trip, RIGHT NOW!!