From the Blog

Hattie Dunstan: New Lungs, New Color

Hattie Dunstan

Hattie Dunstan

On Monday, July 5, 2010, Hattie Dunstan got the call at 1am to come to Toronto General Hospital for new lungs. By 4pm, the miracle of transplantation was complete and her cystic fibrosis-riddled lungs were gone. Her new life, while still heavily sedated until the next morning, had begun.

I love reading these stories, because it was one more person on my blogroll who went from the purple “Waiting for new lungs” status to the green “Transplant recipient” status. I’m looking forward to not being able to find anyone on the list blogging away their days waiting for new lungs. I’d rather that my list be all green “new lung” blogs, white “I’m doing fine” blogs, and pink “I’m sticking by my CFer” blogs. Say “no” to purple!

Two more on the list to go! Hang in there Beth and Dustin. I was just reading Hattie’s post from July 2nd a moment ago, and I got choked up remembering reading it on the 4th, with none of us knowing she was getting new lungs the very next day! Here is what she wrote:

The word breathless has taken on a whole new meaning. I thought I knew what being out of breath was. I thought I knew what not breathing was like…no…not until this week did I know what it is like to struggle…and that’s saying something!

I cannot even get over how much my breath has now been taken from me. Doing anything leaves me gasping, haunted, winded, exploded, breathless. It is absolutely insane, terrifying and unbelievable that something as breathing can be soooo hard, even harder then before!

Amazing! Go, Hattie, go!

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.

Update on Testosterone Replacement Therapy

Shooting up again. It is Friday!A couple of months ago, Aetna Specialty Pharmacy warned me that they were no longer going to be able to acquire my testosterone cypionate any longer. It’s not the first time they have told me that, so I didn’t worry about it… until I ran out and I had to scramble to get some other way to get my hands on this life-changing juice.

The quick background story on why I need testosterone therapy is that CFers are now known to be notoriously low with levels, though I haven’t researched why. One day at clinic I complained of lethargy and they did a testosterone level blood test and I came up way worse than an 80 yr old man. It was basically non-existent. No wonder I was tired. This is my second post on the subject, so for more, including a video of Fatboy, head over to Fatboy Gets Juiced Up โ€“ Testosterone Injection.

The issue was that I was prescribed 200 mg/mL dosage, so I was doing 1.5 mL every other week to come up with 600mg per month. I called Pharmaceutical Specialties (PSI) because they handle a few of my other things to see if they could get their hands on it, but they also came up blank, but they did find availability of 100 mg/mL and gave me the NDA number (like a serial number for meds) to check with Aetna one last time.

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Fatboy Discusses His Health Insurance

Demote: Socialism + Healthcare by ~JFox343

Demote: Socialism + Healthcare by ~JFox343

Some people have asked me in comments and via my contact form about my health insurance, so I thought I’d put my story here for everyone’s benefit. To this day, and I imagine forevermore, my article: Fatboyโ€™s Take on the Healthcare Reform Bill will remain one of the most popular pieces on here. Things to keep in mind regarding this information:

  • I live in Florida
  • I’ve never been on disability anything
  • I’ve never had a lapse in health insurance coverage

I’ve been on COBRA insurance several times in my career while switching jobs and had an individual policy with the company after I decided to convert it once before. We’ve done it again, so now I have a $5M policy with the same insurance company I’ve had since 2000, but my lifetime limit has reset every time I go onto a company plan and back onto an individual policy. We’re at about $60k so far – no sweat – but going back to my first insurance policy, I never gave any of that any thought.
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