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Be Compliant… or Else!

Fatboy - new shirtIt’s sad to say, but I’m talking to/about myself with this one. I’ve been writing a post for 4 days now, but I’m in a completely different state of mind now, so I’ll post it later as a reflective piece. Today, I’m kicking butt and taking names again, but Friday wasn’t so much of the same.

I went for an unscheduled clinic visit Friday because Tuesday was a day of misery. I was wheezing and whistling. Each breath was labored. I was coughing up junk with each cough and I was having dozens of spazzes every day. The only things not happening were bleeding or fever.

I was down almost 10 lbs since Feb. 18th, but I blew the same PFTs: 35%. It didn’t make sense how I could feel this bad and still have 97% O2 sats while constantly being out of breath. 97%!! I don’t have that when I feel like a friggin’ ox!

The doctor came in and took a look at my numbers and what I wasn’t doing every day came from Sue… and me. He asked, “Why?”

Chronic entrepreneur

I’ve been under a lot of stress making sure we have enough money to pay our bills each month now that Beautiful stays home. The amount our budget has gone up since I worked in the office is profound, and now we’ve subtracted her income from the mix. It sure makes budgeting easier to just say, “This is how much you need to earn this month,” but I feel the physical effects of the stress in my lungs.

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Pulmozyme: The Effectiveness of One Medication

This is a zebra

Pretend this is a donkey, then Fatboy.

We’ve all done it at one point or another in our lives, usually in college or right when we move out of the nest: stop taking one or more meds. It does seem pretty ridiculous to be on so many things at times, and you feel fine taking everything, so what’s going to happen if you stop one? Just one. Well, I’d be glad to tell you what happens so you don’t have to be a bonehead like Fatboy. I know I’m going to hear about this from my coordinator, but I can take it. I just want to be sure you don’t do the same thing or do the same thing with your kid with CF. Consider this a PSA.

A little over two weeks ago, I ran out of Pulmozyme and I was trying to get a 90-day supply in order to save on co-pays. After unsuccessful attempts at that and a coordinator vacation, I finally got my hands on a new order this week. So I admit it: I was non-compliant for 2 weeks because I was too lazy to call the pharmacy for a follow-up so they would call the doctor’s office to get the re-fill.

What happened in those two weeks with just one medicine not being in my arsenal? I feel more asthmatic. My cough increased, but it certainly isn’t a productive cough, so it’s not like I suffered with an infection or overgrowth of anything, but my quality of life did actually go down. [Read more...]

Hypertonic Saline (7%) for Cystic Fibrosis

I’ve fought tooth and nail to not do 7% saline aerosols, basically since the first time I sucked it down at least 2 years ago. It’s nasty! I’ve never been able to do a saltwater rinse after oral surgery, sinus rinses, or swallow seawater. I have a very strong reaction to such a high concentration of saline, almost a gag-reflex. My chest tightens, I start to salivate like there’s a porterhouse in front of me, and my chest tightens some more.

I decided it was going to be worth the effort and discomfort after reading this article over on RunSickBoyRun.com: Hypertonic Saline Solution (7%). Come on back after reading about the empirical evidence that it works and check out my personal experiences in the last few weeks.

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A Long Walk, but not The Long Walk

We had quite a few things to do today, so I got my exercise in one way or another. It was a sunny, but very breezy 68 degrees in Tampa today, and we just so happen to have an outdoor mall here. It’s just like a regular mall with cool custom storefronts and courtyards and kiosks, only there is a road running down between them all with “city sidewalks” on either side to go into the stores… and there’s no roof. It’s lovely, this time of year; not so much in June, July, August, September!

We parked on one end and pretty much scoured one department store, both levels, and walked all the way to the other end of the mall and went from one end of it to the other, and then ended in the middle department store before heading back to the car by the first store. By the time we were done, my feet were sore because I was wearing my dress shoes with 1.5″ heels! Beautiful asked why I was breathing so loud, but I was doing a lot better than usual. No walking-related spazzes.

As the day went on, I felt tighter and tighter, but it wasn’t for lack of treatments, that’s for sure. Who wants to know the regimen I’m on?

Medical update: I am sending my daily food diary along with the number of meds I'm taking for digestion to the dietician to see if she can figure out why I didn't gain any more weight this week despite eating 32,485 Calories in the last 7 days. That doesn't come cheap!