Biohazard by ~radioACTIVE01

I have three Sharps containers in our house. One is under the upstairs bathroom sink. One is next to the couch for my colistin needles, and we have a spare in the box in the closet. Before I got my port in 2006, I’d never had a Sharps container. Home health nurses would come over to draw my peak and trough blood levels for Tobra and always wanted to know where my container was. Why in the world would I have a container? Now I know.

I pretty much only fill them up when I’m on IVs because I really enjoy my showers, so I reward myself every other night by de-accessing my port before bed and getting a good night’s sleep without any hot, sticky window or unconscious discomfort from having a friggin’ needle sticking out of my chest. Beautiful gets me up extra early when she does, I take my shower while she Facebooks, and then she accesses my port again for another two days of treatment. The site gets a tad sore by the end of two weeks, but I personally feel like it’s worth it for the quality of life of showering and having a fresh dressing every other day.

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It almost seems like a waste of time for a CFer to have a primary care doctor through their HMO. He asks me more questions about how I’m doing than anything helpful, but I do get good general care from him.

I just rarely ever have any “general care” issues. Any time I step foot into my primary care office, I feel like I’m on foreign turf. The office staff doesn’t remember me, they ask me to sign in and if my insurance has changed since it’s been more than 2-4 weeks since my last visit. They are surprised that I am annoyed that they don’t know what NSAIDs are when I list my allergies and that I can spell cefepime for them.

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I’m doing my best and will continue to do my best this trip, but I’ve been a bad boy most of my life – certainly my adult life. Vacation is not the time to be sitting around nebulizing and such, eh? So far, so good on this trip, though.

I remember our annual Spring Break trips to our time share in Tennessee involved bringing my aerosol compressor, but I don’t recall having to do chest PT because back in the day, that meant Mom and Dad had to do it, and they were on vacation, too.

When I spent a week in Colorado Springs back in 2002, I’m pretty sure I only brought my inhalers… probably not the best idea, considering the altitude. I did fine, though, and that’s why I never worried about treatments for a few days. Or weeks. Or months. Until I got sick and went on IVs.

Back just after we got married, the only thing we brought was my Albuterol and Pulmozyme with my ailing eFlow that took 30 minutes to dispense the meds. I was not into that at all and probably only did 1/5 of my treatments. I also didn’t do my Vest back in the day because, well, I think the Hill-Rom vest is a piece of crap forcing you to hold down a pneumatic switch to make it run. What moron thought up that idea: an active switch for a passive treatment? /end rant

Lesson learned – the hard way

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©2007-2010 ~turkeza

Here’s another classic: you’re in the ER and the doctor finally saunters in after you’ve been there for hours, and one of the first things he asks you is, “how long have you had CF?”

I want another doctor. Now!

I’ve watched my doses from the home health pharmacy come in with a Tobra dose for a 75kg person. Who told them I was 75kg? I was 43 or so at the time.

I’ve left the pharmacy with one box of Pulmozyme when my Rx is for twice a day (60 vials/month) and had to go back to get my full amount, not once, but twice.

Growing up in a small town in Ohio, I’m sure we put the pharmacist’s kids into every one of their cars and through college with our own supplies. In a town of 40,000, I was likely the only person there who had CF – we had to drive an hour to our CF center in Toledo.

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