Cystic Fibrosis Fatboy — Page 51 — The daily quest to gain weight

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.

[Read more…]

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!

[Read more…]

Cystic Fibrosis and Donating Blood

September 26, 2010

It appears that I didn’t quite explain the process that I went through to determine if I could donate blood or not. For one, I never used to weigh enough, so I’d only entertain the idea during those times where I’d hit 118 for a day or so and then lose it again.

I called the blood bank first and asked if it was okay if a CFer gave blood and their main concern related to me having CF was whether or not I was on antibiotics. I explained that I go months without IVs and I nebulize an antibiotic every day. She didn’t care about that sort of antibiotic. I followed that up by saying that I was on Zithromax on M/W/F, but I could give blood on Sunday mornings at church. She said it’d be out of my system, so that was fine.

She did advise me to answer “no” to the question about taking antibiotics because it would lead to one of two things:

two or three questions that would result in them marking a “no” so the blood is accepted into the system or
a denial to give blood that day because the tech is overly cautious.

[Read more…]

Recent Conclusion and Fighting the Urge

September 24, 2010

I’ve had a recent conclusion that my lungs are clear and I’m fighting the urge to slack off on treatments as a result. Don’t worry, though, as I’ve already preached about taking all of the meds you’ve been taking, even once you feel good. The reasoning is: you got to where you are by doing what you’re doing – to do less will make you feel less healthy.

What brought me to my conclusion is a combination of two things:

a nearly complete lack of loogies
the seemingly ineffectiveness of my Vest treatments

When I get sick or feel something coming on, my biggest indicator is how productive my cough is. If I’m battling an infection, there is an endless supply of nasty mucus. When I’m healthy, I can’t bring anything up to save my life.

I’ve read numerous accounts from my new CF friends about how rough the Vest is on them. They can’t do a treatment if they are having issues because they say something to the effect of, “it’s too much at once,” and it’s overwhelming since it treats all of the lobes at once. For me, I can go a full 30 minutes at 90-100% without any coughing, though it does rid me of any wheezing symptoms.

This conclusion is what drove me to start my big push to exercise. [Read more…]

How a CFer Prepares for Sinus Surgery

October 8, 2010

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 … [Read more]

Cystic Fibrosis and Donating Blood

September 26, 2010

It appears that I didn't quite explain the process that I went through to determine if I could donate blood or not. For one, I never used to weigh enough, so I'd only entertain the idea during those times where I'd hit 118 for a day or so and then … [Read more]

Recent Conclusion and Fighting the Urge

September 24, 2010

I've had a recent conclusion that my lungs are clear and I'm fighting the urge to slack off on treatments as a result. Don't worry, though, as I've already preached about taking all of the meds you've been taking, even once you feel good. The … [Read more]

Time Elapsed Since IVs