From the Blogposts » inbox

Why you NEED an eFlow a.k.a. Trio and Altera

I’ve been using an eFlow nebulizer since March 2006, and it has single-handedly changed my ability to do all of the nebulized treatments that are prescribed. Like everyone else, I was raised on a pneumatic nebulizer pump. They’re loud and take forever and a day to run through 3mL of dosage, usually 20-30 minutes each, right? You have to have an outlet nearby or have a DC/AC converter for your car.

What if I told you that you can do a dose in 90 seconds to 3 minutes running on rechargeable AA batteries? It pretty much eliminates every excuse in your book about not having enough time or an outlet available. You can see by my list of meds how long 30 minutes per dose would take me every day with old technology.

My first eFlow was a first generation machine and was eventually determined to be ruining the little aerosol head that microscopically disperses the medicine into a mist much finer than any air-driven neb can. My doses were taking longer and longer, until it was taking as long as a regular neb, and I pretty much gave up on my treatments because I really didn’t have that much time. I got a new machine, now the current Trio by switching to another specialty pharmacy.
[Read more…]

My New Daily Enemy: Heartburn

I’ve had daily enemies my whole life: bloating, wheezing, shortness of breath, etc. They’re nothing new, but this new symptom is just plain annoying! I suppose it’s due to my increased food intake producing more stomach acid. It used to just be that I was supposed to take Zantac to help my enzymes not get destroyed as fast, but now it’s a matter of daily functioning.

I’m wondering if anyone else is experiencing such a brutal burn, so let me describe it. There is a strong pain, as if I swallowed battery acid, in my throat/windpipe just below my Adam’s apple. Nothing above and nothing below hurts. No amount of eating or drinking cold things make it go away. The only relief is an hour after Zantac or prevention via Zantac.

So, anyone else burning away, too?

Fatboy Gets Juiced Up – Testosterone Injection

So, here is a Fatboy first: a video. My shipment of testosterone came today, so I shot up because the shipment was a week late and I can’t wait until Sunday because I can already feel my levels dropping. Here goes… hope it’s medically correct!

Correction: not twice per week. Twice per month.

Males with cystic fibrosis have historically low testosterone levels, something I wish they knew when I was 12! It brings about all sorts of adverse side effects, such as

  • decreased energy levels
  • decreased muscle mass
  • decreased liver function
  • decreased libido
  • decreased appetite
  • decreased bone density leading to osteoprosis
  • increased mood swings

None of those are very good, and to have all of them really decreases one’s quality of life, especially when you are thrown into a rough time in life and have low energy and a mood swing at the same time. That leads straight into depression, which I can attest to after losing my job early last year.

[Read more…]

Hypertonic Saline (7%) for Cystic Fibrosis

I’ve fought tooth and nail to not do 7% saline aerosols, basically since the first time I sucked it down at least 2 years ago. It’s nasty! I’ve never been able to do a saltwater rinse after oral surgery, sinus rinses, or swallow seawater. I have a very strong reaction to such a high concentration of saline, almost a gag-reflex. My chest tightens, I start to salivate like there’s a porterhouse in front of me, and my chest tightens some more.

I decided it was going to be worth the effort and discomfort after reading this article over on Hypertonic Saline Solution (7%). Come on back after reading about the empirical evidence that it works and check out my personal experiences in the last few weeks.

[Read more…]