Thursday, November 5, 2009

Keep on Keepin' on Like a Bird That Flew . . .

Random Sidebar/Fact of the Day: LOVE Bob Dylan. Love the above-mentioned lyrics. Love listening to my ipod while gazing out the window at the Hudson river and the George Washington Bridge. Love having nothing really better to do than sit around on 5 liters of O2 because I can't leave my room due to hardcore isolation protocol . . .

Whoops, took that one a little too far.

Okay, so the past couple of days have been, um, "eventful", and not so much in a good way. After my super fun day at the races (literally) on Sunday, I was all set to get the H1N1 vaccine and then start IVs on Monday for a quick tune-up. My lungs sounded better than they do with hardcore infections, and my PFTs were still stable, but my increased cough, lung goo (sorry, it had to be mentioned), and the recent growths in my cultures convinced us that we should act early rather than wait. So I started the IVs on Monday evening and settled in for what everyone expected would be a fairly easy and uncomplicated round of drugs.

Then again, if CF has taught me anything, it's to expect the unexpected.

Monday night I ran some medium-grade fevers (around 101) and was a little achey, so I called my doc and we all chalked it up to most likely a vaccine/IV drug combo, especially since it's not uncommon for me to run some fevers at the start of IVs. This theory seemed to be confirmed by a lack of fevers all day Tuesday, although I was tired and a little achey. Tuesday night, though, my fever spiked up to 103.5 and simply wouldn't BUDGE for about 4 hours. Call the doc again, start TamiFlu immediately, check in again in the morning. Wednesday morning, O2 is down, but fever is also only around 100.5. Still no sign of a sore throat, additional cough, or headache -- just achey and feverish. By Wednesday afternoon, when my fever went back up to 103.5, however, I knew I was destined for an all-expenses paid vacay at my favorite "Club Med" -- and sure enough here I am.

Surprisingly though, I haven't run any real fevers since coming here. They brought down my initial fever, were able to hydrate me thoroughly through the IV, and since then I've felt SO much better. My O2 levels are still low, but that's why God invented nasal canulas, right? And they're holding steadily above 95 on the increased dose, which means the old fighters are still working, if a little compromised right now. I have faith that those numbers will bounce back -- they always seem to for me, thankfully.

Now for the REALLY good (if only preliminary) news: early results show that this is NOT swine flu! We're still waiting on the more advanced, more accurate test, but if that comes back negative tonight and I have no fevers through the night or tomorrow morning, I should be free to leave and go home to Mr. Sampson by tomorrow afternoon. Totally visualizing that negative flu result now!

They do think these fevers might have been drug-related after all. My amazing team here includes my wonderful CF doc, as well as two fabulous doctors from infectious disease and vascular surgery, so I'm pretty confident that whether this is drug, virus, or clot related they'll figure it out eventually. At this point, though, I'm just happy to be seemingly on the mend.

I don't mind sharing that this whole flu thing had me pretty freaked out. I'm so sick (no pun intended) of seeing people with CF struggle with this virus and other complications. I hate knowing that life is so fragile that it can hang in the balance of a cough not covered, or a hand not washed, or any other of a number of factors. I also know that this is true for people regardless of whether or not they have CF -- I guess it's all part of what makes life precious at the same time. Still, it's never easy watching your friends get sicker, whatever the cause. I feel blessed to have so many wonderful cystics in my life -- the friendships are really amazing and I wouldn't trade them for anything -- but it still hurts to have to say it: breathe easy, Lauren. You'll be missed.

I have a lot more news to share on the transplant front, and hopefully will be able to update soon when things are a little more certain. And for now I'm just going to keep on keepin' on, and hopefully be home in time for dinner tomorrow.


  1. so glad it wasn't swine flu! FIGHT ON Piper!

  2. So glad it is looking like nothing but some IV med induced fevers.

    I was sent home today for the next two days because someone in our office has h1n1 and the partners didn't want to take chances of me getting sick. I wasn't about to complain!!! 2 paid days at home hells yeah!!!

    Hope you get out tomorrow and get to eat dinner at your place with Sammy bear!

  3. Visualizing the negative flu test now! I hate how fevers make us all flip-out!

  4. Good thing it's not the flu!! I'm still on the "waiting list" at my doctor's office to get the vaccine. I wish they would hurry up and get a clue. I'm scheduled for a spa visit at Thanksgiving and I'm thinking swine flu shot would be a good thing. :)

    ps - I love reading your blog! Thanks for all your stories, happy and sad. It's great reading about other people's journey!!