Thursday, April 23, 2009

Tomorrow . . .

. . . I will officially be IV FREE!

. . . will mark the 17th day since I left work (but who's counting?)

. . . may very well be the day my friend and his wife welcome their second child into this world.

. . . someone, somewhere, will receive a lifesaving gift via the miracles of organ donation.

. . . it is supposed to get into the 70s here in NYC. One word: finally.

. . . marks the beginning of a very fun weekend, including plans to visit an art show, have dinners with friends on both Friday and Saturday, and time with my sister and her friend from Kenya.

. . . I will officially be IV FREE! (Whoops, did I already say that? Sorry!)

. . . will be a really, REALLY good day.

Seriously, I'm really excited. I cannot WAIT to have this thing out of my arm again, and here's hoping that this time it can stay that way for at least a month. Preferably more, obviously, but at this point I'll take what I can get.

Thanks to everyone for their comments about my last post. I haven't seen my doctor again yet, and I don't go to her until the week of May 4, so I'll ask her my questions then, and I also have the remaining evaluation tests (like the heart cath) scheduled for May 11th and 14th, so after all that I'll know more about what the plan is. Right now though, my inclination is to follow my doctors' recommendations and then fight like hell to delay the actual NEED for a transplant as long as humanly possible. And just in case anyone's worried that we arrived at this place without really trying the alternatives, here's a quick recap of some of the steps I've taken in the past 12 months, during which I have been on IVs 7 times, 2 of which have been for 4 weeks or more:

-Aztreonam Lysine for Inhalation Study -- Expanded Access Program
-Exercise (I either run or do a mile and a half hill walk everyday, in addition to walking to work and walking my dog, plus strength training)
-Gaining about 15 pounds through insane use of supplements
-Fizzy NAC
-Prescription-level vitamins
-Flagyl for possible anaerobic bacteria
-Pulmicort inhaled steroid
-Switching from albuterol inhaler to nebulized version
-Stopping Advair
-Moving to a brand new, mint apartment with no carpet
-Extended high-dose prednisone
-Increased airway clearance and increased HTS treatments
-2 hospitalizations with IV steroids
-Nexium for reflux issues
-Decreased work schedule
-Sinus rinses
-Bronchoscopy and CT scans of both lungs and sinuses

So yeah, about all that's left is stopping work altogether (and I'm taking a break now so we'll see how that goes) and a g-tube, which I do NOT want. At all. So as long as I can force myself to drink 6 Boost Plusses per day, that final one isn't going to happen.

And you know what, even after all that I'm pretty much convinced that I can get better. I honestly believe that right now, crazy as it sounds. I don't ALWAYS believe it -- when I'm sick it gets really, really hard to convince myself -- but the majority of the time I seriously think that I'm right around the corner from a breakthrough and that one of these days something will "click" and my PFTs will start climbing again, or at the very least I'll stop getting sick all the time. Hey, it could happen.

But in the meantime I don't want to let my optimism give way to naivete. I have amazing doctors, and I trust them with, well . . . my life. These people know what they're doing -- they are, respectively, the director of a nationally accredited adult CF center with a great reputation, and a transplant pulmonologist at an amazing hospital that happens to be "very heavy on CF" when it comes to the lung transplant program. So I have to have faith in them as well as in myself, and right now that instinct is telling me that they're right when they say better to be on the list healthier and at least have the option of accepting organs if they come along than to gamble with the chance that one of these infections might ultimately prove life threatening. And if this proves a leap of faith in some ways, well then, I guess we all have to make those choices sometimes, right?

So my decision, for now at least, is to get listed -- which seems both monumental and anticlimatic at the same time -- and then to fight as hard as I can to get back to a point where people feel comfortable taking me OFF the list again. Because where I am now I need a lung transplant, and maybe that won't change at all, but then again maybe it will. Hell hath no fury like lungs scorned.

And that's the plan for tomorrow.


  1. Yey IV FREE!!!!!!!!! Freedom!


    And I for one believe that whatever you do, will be the best for you. Take care and enjoy a fabulous weekend :)

  2. Sounds like a good plan. I am glad your going to be IV free. Hopefully you will be able to have a nice long break and be HEALTHY!

  3. I hope you do have a fantastic tomorrow!!!!!!

    Yay for no IV's =) =) =)

  4. congrats on being iv free!! i know what it feels like to be in that line between transplant and not. last year in may i was really sick. i was put on the transplant list and my fev1 was at 27% or less also i weighed 92lbs. i decided if i'm going to have a transplant i would try and get as healthy as possible. i had a boyfriend at the time and he helped me alot with eating and just taking care of myself. today i weight 108lbs and i'm only 4'11" so that's pretty good and my fev1 is up to 39%. they took me off the list last year when i got to 30% fev1. i used to work but quit to work fulltime on my health. also i just run errands during the day for my parents. i workout almost everyday and i feel that has made a huge difference. i feel like if i can do it anyone can do it. i think us cfers know when it's our time for transplant. and i know you will know yours but i want you to know that there is hope of getting better!! goodluck!

  5. btw.....i forgot to tell you my boyfriend who helped me so much brokeup with me in nov. only after 4 months of dating. i'll never hate him though cause he helped me alot. when he brokeup with me i also told myself i wouldnt let him bring me down! so i fought even harder!! :0 )

  6. So glad you will be off the big question. How long until you go back to work? After May 4th when you see your DR...I hope ;)

    Lots of hugs for you and Sammy!!!!!!


  7. Lol...June 1st Amy - a loooong time from now!

  8. Hi Piper, I'm glad to see you're free - without those pesky IVs! Your optimism is inspiring. :) I hope you're outside enjoying the perfect weather this weekend. {{{hugs}}} ~Juliet