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What CFers Do: Throw Free Drugs Around at Church

This entry is part [part not set] of 19 in the series What CFers Do

BlushingSinging this Sunday got my sinuses literally abuzz and triggered a Montezuma’s frontal sinus headache by the time we were done with 3 songs. When the 4th and final song was over, the only thing on my mind was to crack open my pill bottle and extract one of my two Vicodin ES pills to find sweet relief. Things didn’t go as planned. Follow along and laugh at my folly and feel free to share your most embarrassing pill story in the comments. I won’t make fun of you… too badly.

Here’s what happened:

I got a Nalgene bottle for my college graduation, so I like to bring that to chug on my sweet tea or Gatorade to keep hydrated and avoid any coughing fits that can occur in any 75 minute span. Using an order of events that I’d like to have a mulligan for, I placed the (closed) bottle on my right leg, propped up by my left foot, which was crossed over my right knee. As I popped the cap off my pill bottle, the Nalgene bottle started to slip off to the right to come crashing down.


My pill bottle is a regular, small pharmacy bottle filled with about 20-25 Zenpep, 10 Xanax, 1 Soma, and 2 Vicodin – yes, well over 30 pills.


As the Nalgene started to go, my cobra-like reflexes sent my right hand over to block its decent to earth. Unfortunately, that was also the hand that was holding my now open pill bottle. I saw a slow-motion director’s cut of all of my pills flying out as if they were buck shot from a 12-gauge, flying toward our youth minister and a Sunday school teacher a full 10 feet away on the other side of the isle.

This wouldn’t have been too terrible, except the pastor had just started his intro and he had a clear line of sight at my blunder, and at least half of the pills ended up under said people’s seats… so there we were, me and my bro-in-law’s girlfriend on our knees scooping them up as fast as we could and the other two guys leaned over picking them up from under their seats. Without calling HazMat, we got them all back in my bottle and got seated again. About 30 seconds later, another Xanax was discovered and returned to me.

I was sooo red that I could feel my heartbeat in my cheeks and forehead. If I didn’t need the Vicodin so badly, I would have switched plans and popped a Xanax instead.

So, remember, kids. Don’t do drugs at church… at least after the sermon starts.

Ever-Improving CFers on the Rise

CelebrateIt’s been three months already, so it’s time to make my trek back to Tampa General to see if I’m still improving with age. My numbers have gone up since going completely compliant in March, so that trend should continue unless I’ve just come down with something this week with Beautiful being sick. The goal this visit is to blow a 40% FEV1 and a 42 would make me ecstatic (it’s a “Hitchhiker’s Guide to the Galaxy” thing). She is coming with me on a very rare trip to clinic because she has to be at work at 8am and my clinic appointment is always at 7am. She just told them matter-of-factly that it is my clinic day and she is going with me. After work, she has an appointment with an ENT/Allergist to see what is ailing her.

I’ve seen a lot of clinic visits being posted and tweeted about with great results with my new-found friends with a couple of unfortunate hospitalizations and a bad case of c-diff. It almost seems like everyone is doing a better job taking care of themselves and the meds are working. Go figure!

It doesn’t come without sacrifice on one end or another, though. For us, it’s co-pays out the nose, making budgeting impossible. For others, it means being on disability (which means you darn well better be compliant if you’re just sitting at home, right, right?). For others, it’s just a hard life that I used to live with a split life of work, school, family, and treatments. I’ve only crossed off school from that list, but once you enter into the family part, it’s a whole new world.

[Read more…]

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…]

My Secret Weapon for Medicated Weight Gain

Over a year ago, I complained about a severe lack of appetite. “There’s nothing out there for me,” I said, “everything is all about appetite suppression.” That day, I filled a prescription for Megase. Reading the literature, it’s commonly used for cancer patients who’ve lost their appetite while on chemotherapy and AIDS patients who have chronic loss of appetite.

Megase is also a generic and only costs me $15 for 900mL of milky solution with my insurance. It’s semi-nasty in taste, but nothing that doesn’t quickly wash down with a swig of something nice.

How does it work? I’m not sure, scientifically, but I could look it up. Here’s how it works for me. If I take it 30-90 minutes before a meal, I’m absolutely starving when it’s time to eat. When I take it right before eating (or before), I don’t seem to feel full. The chemical from the stomach to the brain just gets lost somewhere. I would keep on eating if it weren’t so darn uncomfortable to eat 3lbs of food in one sitting.

When to use it to its best potential:

  • before a holiday meal (e.g., Easter, Thanksgiving, & Christmas)
  • before ordering a big pizza
  • before entering a friendly eating contest with your much larger friends
  • any time you just don’t feel hungry