Setback

Everything has been going so well, far better than anyone anticipated when I was admitted over a week ago. Until last night. After a miserable, restless, reflux-filled night, I unexpectedly vomited this morning. I needed anti-nausea meds to settle things down, and my stomach was twitchy the rest of the day. No clue where that came from, however my doctor is hesitant to discharge me if there’s any question whether I’ll be able to stay hydrated once off the IVs. So, tonight is the test. If all goes well, and today was just a random fluke, I could be discharged tomorrow – however, if I continue having problems, I’ll be here until it’s resolved. What an annoying thing to keep me trapped here!

Seriously?

Nothing like being asked by your nurse, "So Cystic Fibrosis, were you born with that?" to inspire confidence. Especially when shortly afterwards I had to explain my antibiotic infusion schedule and tell her how to run them.

(I'd tolerate it better if there hadn't already been similar educate-the-staff moments with at least 3 other nurses. I shudder to think what my care would be like if I wasn't functional, knowledgeable, and coherent.)

Overachiever

First walk without supplemental oxygen! I also met the other CF patient doing the CF Shuffle down the hall at the same time. I lapped her though, because I'm an overachiever. 

Pole People

The Pole People have arrived! Because an IV pole is just an empty canvas awaiting decoration. 

Plugs and positivity

Friend: I love your positivity

Me: Well it's easy to be positive when you have a beautiful plug to look at

Patience

It’s been a bit of a mixed bag the last couple days. I’m still dealing with a lot of upper respiratory irritation, which causes coughing spasms, which causes more irritation, etc. The extremely dry air definitely isn’t helping, and my voice is shot. On the other hand, I’ve been far less dependent on supplemental oxygen. I’m mostly on room air when at rest, and the amount of oxygen needed when walking has decreased. So things are definitely moving in the right direction, and faster than expected! As my doctor reminded me yesterday, however, it took time for me to slide down to this point, and it will take time to work my way back up. No quick fixes here.
Patience. Foy! 

I'm not crazy, I'm just a little unwell

Silver lining or insanity? Every time I reach for the plug from my IV pump, I think, "It's so pretty!"

Snowpocalypse at Presby

Thank you for all the likes, comments, emails, texts, and phone calls! They definitely make me feel loved!! Special thanks to Frank D'Amico, who braved Shoprite hours before the snowstorm, Rachel Uderman Klein, who reached out to and connected me with Chabad of Penn, and Rabbi Levin from Chabad of Penn, who made sure I had delicious food for Shabbos.

Hospitalization was definitely the right call. Last night I was a bit of a fever-and-chills, body aching mess. Fortunately I’ve been fever-free today and feeling a bit better. I’m on supplemental oxygen, which is definitely reducing the strain on my body and making me feel more comfortable. I’m also receiving hydration via IV 24 hours a day, which has helped loosen up the junk in my lungs and made it easier to clear out. And nebulizers and prednisone and IV antibiotics, oh my! I’m usually hospitalized a minimum of 7-10 days, but in the last year and a half I’ve been slower to respond to treatment, so it may be 2-3 weeks. I’m thinking 2 weeks is the most likely. Anyone wanna start a betting pool? 

It was actually kind of comforting being in a medically safe space while watching the storm spend its fury outside my window. The ice also froze into interesting patterns, so I have decorative window art courtesy of mother nature. I hope it’s still there tomorrow so I can take a picture!

B”H I’m feeling MUCH stronger than the last time I was hospitalized in Sept-Oct 2014. I’m very appreciative of the fact that I’m alert and have some energy. I even took a couple (slow) (brief) walks around the unit today. And visitors are definitely welcome! With the caveat that I nap at random times, and have nebulizers and chest PT 4 times a day, so I’m never entirely sure when I’ll be available to socialize. Also, no perfumes, or flowers, or anyone with a cold or any other respiratory illnesses please!

Back to the hospital

My lung functions have been hovering on the borderline for the last month or so, but I've been hanging on. This week, however, I seem to have come down with something, and that pushed me right over the edge. My oxygen level and spirometry numbers are down, and the slightest exertion has me panting. What with snowpocalypse coming, my doctor doesn't want to risk having things go downhill after I'm snowed in, so this afternoon I'll be off to Presbyterian Medical Center in Philly for a "tune up." Fortunately I don’t feel anywhere near as terrible as I did back in 2014, so hopefully it will be a much easier hospitalization and recovery.

I’m honestly not surprised. I’ve been averaging a “tune up” about every 6 months lately, so I’ve been waiting for the next round back in the boxing ring with CF. It would’ve been nice if wasn’t the one and only weekend when absolutely no one will be able to visit me though. I’m also super disappointed to miss out on Panoply with my awesome team! I suppose breathing comes first though.

One of my NCSY advisors (you know who you are!) used to love the analogy of life as an EKG. The EKG is made of ups and downs, and you need both of them to live. My good news last month was an up, and now I’m in a down, and hopefully soon will be yet another up. B”H that I have the zechus of being here to keep experiencing both the ups and the downs!