Healthcare — Page 15

For Your 31st Birthday, I Give You a Blockage

July 24, 2010

I definitely had a birthday to remember last year for my 31st birthday. I got the spend the next while in the hospital, but all of the misery began on my birthday. Let’s rewind a bit and start from the beginning, just for those who haven’t read everything about my history up until now.

I was born with meconium ileus and had about 25% of my small intestines removed in my first few days of life to repair the damage. Subsequently, I have a bottleneck of scarring that has always presented itself as a problem with various foods throughout my life. At first, it was whole kernel corn. For whatever reason, probably just because I became a better chewer of my food or my body grew big enough to let corn get through, I only have a problem with melted cheese when I haven’t taken enough (if any) enzymes. To keep this a little shorter, here is what happens and what normally solves my intestinal blockages.

My birthday is December 18th – one week before Christmas and two weeks before New Years. It’s been our tradition since we started dating to go out to a nice dinner (or as nice as I could afford when her birthday rolled around) to have a memory of the day. I can remember quite a few of my birthday dinners with Beautiful, and maybe even all of them… so you can imagine my horror when I started to feel cramps in the mid-morning on my birthday.
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Pulmozyme: The Effectiveness of One Medication

July 22, 2010

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…]

Another Day, Another Infection

July 17, 2010

An apple a day? I wish that was all!

At least this time, it’s not a new infection, nor is it one that looks to be the end of me, but they do want to hit it hard. I had my sinus culture from June sent to my CF doctor and my awesome coordinator, Sue, called me today with news that it grew out alcaligenes xylosoxidans subsp. xylosoxidans bacteria. She was kind enough to e-mail me the spelling. I must hold the record for coming down with things or needing procedures that she needs to look up, because I keep coming down with some weird stuff that she knows is going to be followed by, “how do you spell that?” because she knows I’m going on the Internet in 0.2 seconds to look it up.

Alcaligenes xylosoxidans

Alcaligenes xylosoxidans has not been associated with increased morbidity and mortality in CF patients.

Not finding exactly what I wanted to know about this “new” bug, I found a research paper on the topic and e-mailed my old boss, weightlifting partner, and friend at Moffitt Cancer Center to see if he could get it from his databases of papers. Ten minutes later, I had a 3-page PDF sitting in my inbox that described 2 CF brothers who got the bacteria 3 years apart. They were both multiple-resistant to many drugs with everything they cultured, but the conclusion of the paper was that this bug didn’t seem to affect their health any and it even took 3 years for one of them to pass it on to the other despite their close living quarters. The paper concluded by saying, “In conclusion, there seems to be no need for aggressive antibiotic therapy to eradicate Alcaligenes xylosoxidans in CF patients.” Well, that’s good news for having a highly resistant rare human pathogen, as far as I’m concerned!

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Not Enough Hours in the Day Without Trio

July 16, 2010

I’ve mused in past articles, particularly those about my compliance and having the Trio for my nebulizer being the integral part of that compliance. Last night, as we were laying in front of the boob tube (no, not watching boobs, being boobs), I had to get up and start my nebs because Beautiful has insisted that I stop going to bed at 1 or 2am watching my site stats from my midnight posts.

She caught herself protesting my abandoning her to go to the couch, but realized before she was done that I was making a sacrifice, too, because I was comfortable and enjoying spending time with her – it was not my preference to get up.

As I made it into the kitchen, she said something to the effect of, “Aerosols, aerosols, aerosols! If you didn’t have the eFlow, you’d be doing them all day long, seriously! You’d start in the morning, and by the time you were done, it’d be time to do your afternoon one, and then we’d eat and you’d just start over again… for another 3 hours.” I’d literally be doing 6-8 hours of aerosols per day. I’m sorry, but that’s not a compatible way to live a life and “live a life.” You can’t hold down a job doing that, and even running your own business from the couch would be hard, too.