Tuesday, March 17, 2009

Bye, Bye, Gravity Drip

Yep, you read that right - the dreaded gravity drip is HISTORY! Woo-hoo! Honestly, I think I'm a little too excited about this, but the freedom of not having to deal with that thing, especially at the office, is totally overwhelming right now. And for those wondering, I did in fact infuse via gravity drip in my law firm, thanks to my private office, a clothes hanger, and some mad macgyver-like skills on my part. And proud as I was of the whole arrangement (think tubing hanging down over my keyboard from the bookshelf above my desk) I'll still be only too happy to throw it all away tomorrow.

The reason for this change is my awesome, amazing, and basically unbelievable doctor. She and I decided at my appointment today (5 weeks down!) that I should switch back to Merrem for the final week. Apparently my recent cultures showed some insensitivity to Aztreonam, which probably explains why I haven't been feeling 100% for the past few weeks. I have to say, it's kind of a relief to learn that my cultures just aren't sensitive to the abx combo I've been using, because while that certainly sucks, it's a whole lot better than having PA so strong I can manage to get flare-ups even while on the correct drugs. And it also means that there's a good chance I'll feel a lot better by the time they pull my access next week, which is exciting. I was doing great on the Merrem during the first few weeks of this IV course, so I have high hopes.

My doctor and I did talk about transplant. My FEV1 this time around was 35%, which is about where I typically stand when I'm healthy, but not yet up to baseline. My baseline is more like low 40s. So there's still room for improvement, of course, but things weren't too bad. I think both she and I were a little disappointed that this is where I stand after 5 weeks of IVs (even considering the Aztreonam wasn't doing the full trick, between that AND the Tobra IV I still should have had a little more improvement I think), but there's not a whole lot we aren't trying at this point. She noted that they don't really take into account infection frequency in calculating lung allocation scores. I told her I was still interested in delaying transplant as long as possible. I think the mark of a really good doctor is that even with things not being where we would both like them, still left the appt feeling SO MUCH better, and with sort of a renewed commitment to fighting this thing for as long as I possibly can. She's not giving up on me right now, and she doesn't think I'm ready to be listed, and frankly that's good enough for me. I can still do a lot of what I want to do, and while I am really worried about what's going to come of work, for right now I'm going to keep trying to be a lawyer and a CF patient. So watch out crappy CF lungs, because I'm waaaay over this little comedy of errors we've been acting in together for the past few months. And this time it's personal.

But for tonight, Sammy and I had some fun in the dog run, I had a great St. Patrick's Day dinner with good wine and a good friend, and now me and the boy are watching a very funny re-run of The Office . . . without the gravity drip!

Wishing you all a very happy St. Patrick's Day!

May the road rise up to meet you,
May the wind be at your back,
May good friends be there to greet you
And your table never lack.

May your life be filled with laughter,
and your heart be filled with song.
May God shine His light upon you,
As you live your whole life long.


  1. If your FEV1 is 35% I definitely don't think you are ready for transplant. I think my tx center said its when you get into the low 20's when they decide to list people. I WISH my FEV1 was 35%! Its been a really long time since I saw numbers like that. I am glad you got rid of the gravity drip and hopefully the last week of abx will do the trick! :)

  2. "When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like Hell." -Lance Armstrong via Gunnar Esiason

    FIGHT ON PIPER!!!!!!!

  3. SO glad that drip is gone!!!!!! You will feel like a free woman LOL!!!

    Happy St Patty's Day to you too!!!!!

    P.S. had a dream about you last night...I can't remember the context but we met up in the airport since I was there and you were on your way to work and you use the airport as a shortcut (WTF). I just remember us riding the escalators together. It was weird.


  4. Congrats on ditching the gravity drip! I hope you get to feeling 100% soon.