I couldn’t properly convey all of the emotions I’ve had in the last few days regarding my pending sinus surgery. This is my first surgery as a married man, making it a whole new ballgame. I’m quite frankly freaking out a bit… sometimes more than a bit. This is one of my longer pieces at almost 1,000 words, just because it’s partially a brain dump and partially to get some good old-fashioned discussion going about some good and some rather unpleasant thoughts. Skip to the last heading if you want to avoid anything deep, meaningful, or sad. Otherwise, read on to get to know me more than you already do.
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It’s Surgery Day! Sinus Surgery No. 9
October 11, 2010
How a CFer Prepares for Sinus Surgery
October 8, 2010
My ENT, Dr. Seper, saw me yesterday to review my CT scan from Tuesday and agreed with me that there were major issues. Largest of these issues was the increased, extreme headaches that have rendered me much less productive and constantly on Vicodin, which is barely touching this pain it’s making now, though it does let me look at my laptop screen and get work done.
She gave me two options for treatment:
- start IV antibiotics for my sinuses for two weeks, but if I don’t have improvement by Monday, schedule surgery or
- schedule surgery for Monday because she had a cancellation
“Door number 2, please.”
She started coordinating with Dr. Rolfe at CF clinic before I’d even left the office, so when I got down to the car, her office was calling me to say Rolfe wanted me on IVs immediately, so I was to call clinic now. I called Sue’s cell phone and we got things arranged to start me on Meropenem every 8 hours starting this morning.
Beautiful accessed my port before she left for work, because she does a better job than ANY nurse ANYWHERE (and if you want to try to challenge that, bring it on!) and I think she secretly likes playing nurse for a patient who doesn’t puke.
It’s All In My Head
October 3, 2010
I’m not sure what news I have yet, but it’s both good news and bad news, either way. My headaches have been getting worse and worse and they are localized around my eyes and it’s pretty obvious that the cause is my sinuses. I’ve had 8 surgeries before, but due to monthly maintenance visits to my ENT, it’s been 6 or 7 years since my last one, though the one before that was only 9 months earlier. That shows how fast they can get ornery if I’m not diligent to get checked out frequently.
My previous ENT, who performed 6 of my surgeries retired almost 2 years ago, and I remembered that he said that if I had a headache for more than 2 days to call him and he’s schedule a CT scan. Well, by Thursday, I’d had about 10 of the last 12 days with a little gnome warrior wearing plate armor hacking away behind my eyes with a two-handed battle axe and a nasty goblin blowing up an inflatable raft behind my brow (those details are very important).
I scheduled an emergency visit to my ENT and got in the same day and she did stuff she’d never done before. I have a scar band running across the left side so access to irrigate is pretty much blocked off, even for the smallest tools because the direct line is blocked. My right frontal sinus (up above your eyes) is an issue because the “drain” gets clogged and gunk grows unabated if unattended to with irrigation with an antibiotic/steroid concoction we made up. The pain I was describing took her action to the next level: a small olive-tipped cannula that she attached to the suction!
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!
