Sunday, March 1, 2009

Tales From an (Aztreonam) Bag Lady

Alright, I totally admit that I've been neglecting this blog lately, but just in case anyone starts to feel like it's because there's so much exciting stuff going on in my life, I promise that's not the case. Unless you're one of those people who considers lawyering and writing endless memos to be exciting, in which case by all means, be jealous ;)

The fun news is that it looks as though I'm going to Australia for work in the next week or so. We have a client out there who may need a team of our attorneys to come out for some review, and I'm lucky enough to be on the team! They actually asked me a while ago and I was initially bummed because I'm still on IVs and thought there was no way that my doctor would let me go. But I mustered up the courage to at least ask and, to my surprise, she was all about it. She didn't even hesitate in her response, and has been awesome about helping me get things "in order" from a CF standpoint -- including making contact with the CF center out there just in case I need any help. I guess the moral of the story (if there is one -- who says stories have to have morals anyway?) is that it's really amazing when you're able to find a doctor who LISTENS and who helps make CF work with your life, instead of always insisting that you bend your life to the demands of your disease. It's funny because I know its my CF team's job to take care of my health and to give me advice on how to best care for myself regardless of whether I want to hear it or not, but I appreciate it when they also recognize that an extension of that of duty is to help me actually LIVE my life within those limitations. So, for example, when my doctor says I need to slow down a little and suggests a 6-week course of IVs, I understand that she is doing her job. And when she nonetheless recognizes the importance to me of being able to say yes when my firm offers me an amazing opportunity -- and even more when she actively gives up her time to help make sure I can safely take advantage of that opportunity -- well, that is when I know for certain that she is AWESOME at what she does. So all hats off to Columbia Presbyterian. I knew there was a reason that I loved them so much.

On a health note, still on IVs. It's been 2 1/2 weeks so far and I really feel great. Last Monday I saw my doctor and my FEV1 had climbed back to 35%, which isn't awesome, but isn't as terrible as they could have been for sure. Even better (cue the drumroll) . . . my sats the other day were 95%!!! I almost jumped out of my chair and did a little happy dance right there in the office, because frankly I was a little convinced that I would never get above 93-94 again (at least pre-tx). So needless to say I have bid a fond farewell to my O2 concentrator for a while, night excepted of course. It feels really freeing to even be able to do light exercise without the thing. Although I did get an amazing Sequal Eclipse portable concentrator that is only 14 pounds, so I will post pictures of that soon. I owe so many back pictures at this point it's scary.

The only negative thing right now is that my stupid home healthcare company (and it shall remain nameless, but I'll give you three guesses) managed to f-up my meds and brought me my aztreonam IV in bags. BAGS, people! Honestly, I know how spoiled and whiney this sounds, but I have NEVER done IVs in bags at home. I've never had a pole outside of the hospital. Or a pump, for that matter. Always my IVs have been in the balls or the grenade bottles or the push syringes. And to be honest, the week before I leave on a trip halfway around the world does not seem like the best time to change this system. On top of it all the homecare geniuses didn't deliver either 1) a pole/pump, or 2) tubing to connect the bags to the access line on my port. Nevermind that I also needed a dresing change, which was also not offered. So now I have old dressing (ewww) and no way to do one of my meds. Brilliant. Suffice it to say I am not happy with them, but here's hoping it all gets sorted out by tmw.

And finally, I taped a video this weekend to help out with the American Airlines Celebrity Ski event benefiting the CFF. This event is held every year and is a major fundraiser, pulling in normally around $1-$2 million and sometimes even more for CF research. I've been lucky enough to be a part of it as a CFF ambassador and speaker for most of my life, and it's really just an amazing event filled with wonderful people. For the past two years I've been unable to go because 1) it is held in Vail, which is too high for me to go to unless I want to be on 24/7 O2 and 2) two other girls with CF go to the event as well and I have no desire to expose them to the PA that keeps causing me so much trouble. So now I just send videos. Anyway, if you're interested in learning more about the event, check it out here.

And yes, the tall brunette in the middle is me. Unfortunately.

That's all I got. Hope you all had a great weekend.


  1. Congrats on the sats! I can't imagine how liberating that must feel!!!!!

    And Australia - wow! Have you ever been? That's one continent I have yet to transverse..... I can't wait to hear all about it!

    Hug a surfer while you're there - they gave us HTS ;) ;) ;)

    Yey for you! Have a wonderful trip. I hope you'll be able to blog while you're there!

  2. Woo Australia. I'm jealous!

    As for the IVs, I think they've played a very very cruel joke on you. I'm the same and have always had IVs in either the bottle/grenade things or push syringes, although last time I had IVs they gave both of my antibiotics in the grenade things rather than one syringe and one grenade thing and it took about 3 hours for an entire IV dose of two grenade things, which was very irritating.

    As for the needing-a-new-dressing situation, next time you're near clinic ask for some spare dressing, and STOCK UP!! I always do that. I swear I have a cupboard full of the stuff! Xx

  3. Your improved stats are great. Awesome posseum! I'm sure you must feel better since everything has gone up a bit. :)

    I'm curious about your o2 concentrator that you're retiring during the day. I'm researching portable ones myself so I checked yours out. Your was covered by insurance, right, or did you splurge? The web site said it is $4k. Just curious.

    Cowtown (kelly)

  4. Hey kelly,

    Mine was covered by my insurance. If you (or anyone else for that matter) would like to know the details on why they covered and the process I went through, I'm more than happy to share. Just PM me on the other site or send me an email -- I don't want to post that sort or stuff publicly, but it wasn't difficult!

  5. does the home health care company's name start with C and end in M?

  6. Hi Piper -

    That's awesome that you get to go to Australia with work!! I went to Singapore and Australia in the summer of 2007 with work. LOVED it. The hotels there all seem to have these coffee pots that boil water... perfect for boiling my nebs in! While I was there they had 'gene' day. All the corporate offices let their employees wear jeans with a $1 donation to genetic research. So cool!

    One tip on airport security in Australia - they have these security dogs that smell you and your bags. I had heard about that and imagined these big dogs... Oh no! They were these little guys running in between everyone's legs! Anyway, if you have any food in your bag, they'll start yapping away and jumping on you, and security will come over to search (and I mean REALLY search). I didn't want any more trouble with all my meds than I needed to have, so I made sure not to have any food, and the little yapper wasn't interested in me at all :)


    PS - When I was 12 and had IVs, it was only gravity drips. My mom had to count out drips every 5 seconds - they warned it was harmful if more, not effective if less. If you stand up or sit down, bend your arm, roll over in bed... the drip rate can change. My poor mom would be sitting up during the middle of the night doses, monitoring the drip rate! Thank goodness for the grenades!!

  7. Hi Piper! I'm Sara... found your blog thru Somer's I think! I TOTALLY LOVE the balls.. and when they give us anything else, we complain and we then get that "irritated" answer of "that's all we have" and we know that's not true! We were once told by a homehealth care co. that they are "so expensive" that some home healths don't use them cuz they don't want to eat the cost that the ins. co.'s won't cover.. UGh.