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Adding Another Career to My Cystic Fibrosis Life

4th Anniversary

4th Anniversary

Being done with school was a big deal for freeing up my schedule, but now it’s been full again… and it’s about to get more full. Remember, Fatboy is not a victim of cystic fibrosis!

I can tell you more details about my next career move now that things are a LOT more concrete. I’ve mentioned on there and my social networks that I now have a Manhattan PR firm representing me and my public CF interests for advocacy, awareness, internal and external publications, websites, product testing/reviews, media coverage, and public speaking. That got me pretty excited and I was more sure than not that something was going to come of it, but it only took a day.

Gilead (makers of Cayston) will be flying a film crew here to spend the day with me in late November or early December to see what a day in the life of Fatboy looks like, film me training for the 5K in February, and there is talk of coming to film me crossing the finish line (no pressure, Fatboy!!) on race day.

I had another call with the PR firm the next week and they sent me another contact that same evening about another entity of Gilead who pretty much want to “use” me for all of the activities above. They will be sending a welcome packet in the mail now that I did an hour-long phone interview with them today to find out pretty much everything about me to know how best to call upon me for certain opportunities, which I said “yes” to all of.

This would be pretty overwhelmingly exciting and potentially lead to giving me a big head if it wasn’t for my new-found goal for actually using my having CF for good. [Read more…]

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.

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.

[Read more…]

The Arrival of Cayston and an Altera

THE boxI was sitting at the coffee table working away, preparing for my 10am Skype call with a client when the doorbell rang. I jumped up because I knew I’d need to sign for this package: a $2000+ Altera and the $900+ Cayston shipment. I was wrong about the signing part, but right about the package. It was huge with the nice styrofoam cooler and tons of polar packs inside. I like to keep the coolers (okay, A cooler), but that is not allowed because we have a 1-car garage. Gotta get me an outside freezer for the polar packs, too. Man, I could be such a hoarder!

Shall we open it?

[Read more…]