From the Blog

How a CFer Prepares for Sinus Surgery

Fatboy Has a Messed Up HeadMy 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.

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It’s All In My Head

It is me againI’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!

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Major Progress Regarding Fatboyโ€™s Man Boobs

MegestrolWhen I went to clinic in August, I complained about my very (read: VERY) sore nipples. Dr Rolfe has been more than amazing the last year with working with Beautiful and me to get on just the right regimen for my unique situation that I created for myself over the last decade of on/off treatments and over two dozen courses of home IVs. One of those treatments was testosterone injections after my symptoms indicated and blood tests verified that I had the testosterone levels of a geriatric patient, causing lethargy, crying watching reality TV, and an extreme loss of appetite and muscle tone.

I was prescribed 600mg per month about 18 months ago. Due to recent manufacturing shortages, I had my injection dosage changed from bi-weekly shots to weekly shots of a lower concentration to keep my monthly dose the same and attempt to keep my levels more… level.

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More Testosterone Production With More BMI

Do Not Make Me AngryTestosterone is a powerful drug! I wrote a while back that I had a painful side effect that started up sometime around June, if I recall correctly: very tender… uh, boobs. I mentioned parts of this last week in my clinic post, but here is the official article on the topic after the test results are in. I’d read that can happen from too much testosterone when on therapy, but the doctors said “no” to the medicine I found on the Internet as a solution to the symptom until they saw me at clinic to see what was up.

It wasn’t so much of a surface tenderness, but a semi-dense mass underneath the skin that is quite painful to any pressure at all. Sue told the doctor that he had to give a breast exam as she left the room to do more paperwork. Unfortunately, this was the first time in about 3 years that Beautiful joined me at clinic and he was startled and shot back with a quick, “what!?” as Sue quickly said, “on Jesse!”

Hilarious!

His software and my latest blood draw made him suspicious that I was getting too much testosterone because, to quote the good doctor as best I can a week later, “you’ve gained weight and now your gonads are making their own testosterone now.” Beautiful and I recalled that anorexic women go barren when their BMI is that low because the body is just in survival mode. That is what had been happening to me for… my entire adult life since I was never really at a healthy BMI.

I just so happened to not do my shot yet that day, just in the event that they needed to do a trough blood test to get to the bottom of my symptoms, which they did want and did take. The results came in today: high. Beautiful’s response was darn near, “I told you so because you’ve been quick to be mean,” which has been her plight for weeks, saying I was short-tempered and my first reaction was to be defensive and harsh. So, dudes on hormone therapy, listen to your womenfolk when they say you’re a meanie and go get your blood drawn for a trough measurement. I was over the limit at my trough, so I wonder how high I was at my peak on Saturdays or Sundays.

Now, if you’ll excuse me, I’m going to go watch some HGTV and cry during the reveals while I consider new color choices for our table settings.

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