From the Blog

Another Day, Another Infection

An apple a day?

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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Pharmaceutical Specialties Pharmacy Rocks My Socks

Pharmaceutical Specialties, Inc.You can’t get any better than Pharmaceutical Specialties, Inc. (PSI). Period. We have had nothing but good to absolutely outstanding service and support from them since I started using them in mid-2009 in order to get a replacement eFlow unit. They have a special program for CFers and are top-notch in every way. My only bone to pick is that they don’t compound (pre-mix) my colistin, which the other, crappy pharmacy did a one month supply at a time. I’ll be discussing that with them to see if that will be a possibility since their competition does it /nudge /nudge.

The previous specialty pharmacy I had been using for 3 years refused to get me a new base even though I was convinced that it was the base ruining my heads, not my cleaning. After a year of struggling with a new head every month that was sputtering for 30 minutes per dose by the end of the month, I threw in the towel and asked for a referral to another pharmacy that leases out eFlows. That’s how I got the Trio, because I’d had the eFlow since 2006 when it even went by a different name!

From the very beginning, the process has been as smooth as butter. My awesome coordinator called in the script for colistin and I had my new Trio later that week. They also send me my ADEK for free. Things just get better, though, because they are also my supplier for Zenpep and Cayston! These are all of my favorite drugs, with the possible exception of Xanax and Vicodin because of the immediate physical relief they bring.

When I started on Zenpep, there was a rebate program that we got wind of, but they require an original receipt. The receipt we got for the Zenpep simply stated something like: “Pharmacy – Rx: 24532563.” That wasn’t going to work, so I called and asked if they could put a line-item call-out on the receipt to indicate what the med was so I could get reimbursed. Two days later, we got a new receipt in the mail done up just right. They have automatically done this for 4 straight months without so much of a peep out of me.

Amazing customer service #2 just happened this week. Now that Aetna isn’t supplying my testosterone, I have to send in a reimbursement form that needs to be partially filled out by the pharmacist with the date and pharmacy license and signed by them. When my testosterone showed up this week, what was in the box? A pre-filled reimbursement form for that month’s shipment for me to sign and send to Aetna!

I really can’t recommend them enough.

My Nebulizer’s “Dirty Head” for Colistin and Hyper-Sal 7% Saline

3 headsI mentioned on Twitter or the site (I’m getting so old now, I can’t remember anything) that I was using my “dirty head” at the moment. Someone asked for clarification, so I thought it to be worthy of a post now, so I can explain how I roll with 5 treatments in a row.

Pre-requisite reading: Fatboy’s Nebulizer Life

Now that you know my routine, here is the tip part of the write-up on the method I’ve learned after 4 years of having eFlows. I touched on it when talking about my 7% saline dose. Did you catch it? When I receive a new shipment of colistin, PSI is nice enough to send me a new Trio head. Getting Foundation Care to send a new head was like pulling teeth – it was every 3rd shipment and the metal disc was all bubbly and clogged by then. To say I’m happy with PSI would be a great understatement.

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A Medical Look at a Regular Day

BoredToday, I just got fed up with all of these nebulizer treatments, but I did them anyway. I’ve been thinking about portraying what a normal day in my life looks like since I “get to stay home and hope people send me money,” which is an old line Beautiful used to say when I was just starting the home business. It’s a bit more than that now, but I suppose it still rings somewhat true, only further into the future rather than hoping they send money that day.

I looked up at the DVR machine this morning and it was 10:12am. I had made Beautiful’s lunch and made my omelet to down my huge breakfast and sent her out the door packing around 7am. After taking care of client work that didn’t get done last night when I passed out on the couch from a long day’s work, I started my nebs.

Everything is pretty organized now, so it is just a matter of making a stop at the fridge, the counter, and opening a cabinet door and coming back to the couch. This month, I’m on everything, so my routine includes Albuterol, Pulmozyme, Cayston, Colistin, and 7% saline. It’s a heck of a run, but I am ever so thankful that I don’t have a compressor and can do them all in my Trio and Altera in about 15-20 minutes if I don’t get distracted when one finishes. It’s really easy to put the neb down and just keep working in my line of work. If it weren’t for that technology, I’d be staring at 2.5 hours of nebs twice a day and an hour at another time and I would surely not be as compliant as I am.

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