The name of this blog

Posted on

I just thought I would share something funny: I wanted to use blogger by google but magicbluepill was already taken. So I decided to find out what the other magicbluepill was and it turns out its viagra! Wouldnt want to get the two pills mixed up!

Interestingly sildenafil (viagra) is being used in clinical trials with CF as it is thought that it helps the sodium-chloride balance…

2012: Before Kalydeco

Posted on Updated on

I’ve decided to write a blog so that anyone who is interested can follow my progress with Kalydeco. I was approved on to the Named Patient Program in Australia last week, and hopefully will start Kalydeco later this week.

2012 has not been a great year for me in terms of my health. In December 2011 I was travelling in Vietnam when I reacted to pantoprazole and developed acute kidney failure, with a creatinine of 460. Whilst my creatinine and kidneys are now normal, my reflux has been much worse as I cannot take that class of reflux medications (proton pump inhibitors). I already had a nissen fundoplication at the age of 12, so it looks like there are limited current surgical options.

My lung function has been lower this year, so I have been having IV antibiotics more frequently, about every 3 months. I have had much less energy this year, I cant remember the last time I woke up and didnt feel really tired. I have been struggling to keep up with part time uni and work and have had to decrease my commitments recently. I have been coughing overnight and in the morning much more than usual. So I am looking forward to any possible improvement with Kalydeco!

Hopefully it will arrive this week, I dont think it will seem real until it is here and probably not until I hopefully see an improvement!

Current:
Age: 27
Genes: G551D and F508del, diagnosed at age 3.5
Sweat Test: 102 (110 when diagnosed in 1989)
FEV1:
41% (90-100 as a child, 85% in 2003, 75% 2005-2010, 65% 2011)

Chest: Extensive bronchiectasis according to CT, pseudomonas since age 3 (nothing besides pseudomonas cultured over the last 15 years)
Weight: 55.6kg (55-60 over the last 10 years)

Height: 166.7cm (my BMI of 20.0 is reasonable for someone with CF. I had overnight feeds from age 12-17 so that helped me get to a normal height & weight)
Current Meds: Creon Forte, Azithromycin, Abdeck (vitamin), Ranitidine (reflux), Pulmozyme, Hypertonic Saline, inhaled TOBI as needed, intravenous antibiotics every 3-4 months.