Wednesday, April 29, 2015

Two Months Since Zosyn

It has been two full months since I had my port deaccessed and stopped IV antibiotics. Two full months of feeling like myself. Two full fever free, ache free, sick free months. The people at the gym know me by name and the pool feels a little like my second home. This is the longest I have felt "normal (like CFers ever feel normal) in a really long time. I know better than to get my hopes up, but for now I am enjoying the old me once again!

Wednesday, April 22, 2015

Toddler Talk Part 6

Language development has been by far my absolute favorite part of watching my daughter grow up. The most fascinating and comical aspect of language development of an almost three year old is how one moment she can use words that seem far beyond her years only to completely botch the very next word that comes out of her mouth. So despite the correct use of words like disgusted, delightful, and homesick she also says the following not so correct sentences/words on a regular basis:

1. "Yummy to my chum chum chummy!"

2. She calls an oven mit a "hand bra"

2. Wrinkly fingers from the bath she calls "crumbly fingers"

3. Excuse me is said, "scoo scream"

4. Whenever she cries and her eyes are full of tears she calls them "blubbly" (like bubble with an extra l)

5. When I got home from the hospital, but was still on IVs we watched the Daniel Tiger where his mom is sick a lot. In the episode Daniel Tiger sings a song, "when you are sick rest is best." Kaylee still loves to sing, "When you're sick rest is rest" which seems a little redundant, but who am I to judge?

Wednesday, April 15, 2015

Allergic To Life

As a teen my dad would always bring me to my CF appointments with a pen and notebook in hand. He would scribble everything the doctor said and keep track of all my stats from the appointment in that notebook much to my horror. "Dad, you don't need to take notes. This isn't school," I would plead, but my scientist father paid no mind to me and kept those books until I started going to appointments alone. And although the notebook was not my style I learned the value of keeping track of my health and trends over the years. So I started a calendar (visual learner much?) and kept track of my PFTs, O2, clinic appointments, and took careful notes of everything important that took place during my appointments on the calendar.

So when April rolled around, only 6 weeks after IVs, and my lungs felt like they completely closed shop leaving me gasping for air I turned to my 2014 calendar. I was wondering how I felt last April when I was only a few months out of the hospital. Sure enough April was my worst month last year. I wrote that although I didn't FEEL sick I was tight! So tight that my lung function plummeted and I was using my inhaler up to seven times a day. There were nights I woke as if I were suffocating and puffed my inhaler until I felt well enough to sleep again.

Exactly a year later the symptoms were the same! I felt so tight my inhaler was glued to my side and I found myself gasping for air as if I were drowning at the smallest of tasks, but besides being short of breath I didn't feel that bad. After April my health improved a lot which led me to believe allergies may have been the culprit. I went out and bought a new allergy pill (to add to my year round Singulair) and within 24 hours I felt a huge improvement. My 7 puffs of Combivent a day was reduced to three or four and my PFTs continued to climb over the next few days. I am still not at baseline, but I am significantly higher than I was before switching allergy pills. It also confirmed that even though my 14 year old self was ashamed of my nerdy dad taking notes as if he were in a lecture hall rather than a tiny clinic room he really knew what he was doing. Sometimes you have to admit that your parents really were right all along!

Sunday, April 12, 2015

Quality Control

I got my first vest at the age of 14. That obnoxiously large Vest shook my chest walls throughout my teens and followed me to multiple dorm rooms, apartments, and even saw the first few years of my marriage. At 28 I finally got an upgraded Vest, not because it was broken (although the timer no longer worked and the peddle sometimes needed a little encouragement to get the thing to start), but because my insurance finally approved it. The new Vest came when I was heavily pregnant, but even with a Vest that couldn't be fully snapped, I was delighted with the much smaller, lighter and programmable Vest.

And then within two years it broke. Just stopped working. So I got a new one. This time with locking hoses (!!!) so that less time was spent popping tubing back into the machine. Although the tubes did wiggle their way out of the machine from time to time I was still excited to get an upgraded version that would make my Vesting experience more enjoyable... enjoyable as sitting in a Vest that violently shakes your chest for 30 minutes can be.

And then with only 200 hours clocked on the machine the new and improved locking hose broke. A little over 6 months and the tube is completely useless. As I wrote "call the Vest company" on my Monday to-do list I couldn't help but think about the old, loud, HEAVY vest that lasted 14 years without a problem which seems to be 12-13 years longer than I can get the newer model to last!