Filed under Clinical trial

Rollercoaster ride

Rollercoaster ride

7:10am – I wake up. Before my alarm. Why? Why, on a day off from work, when I cannot even eat or have a cup of coffee to assuage my gnawing hunger, do I wake up early? 7:45am – Despite waking up early and not having anything to do except dress myself I leave the … Continue reading

O Day

O Day

We both have dates for our transition from the Orkambi clinical trial over to the marketed dose of Orkambi. My O Day is scheduled for November 20. Only two weeks away. I am expecting my health to stay exactly the same.

Ork… wait, what?

Ork… wait, what?

Let’s say that coffee is your thing. Maybe it’s tea for you. Perhaps a hot chocolate or an actual piece of chocolate. Wine might be your treat of choice, paired with soft cheese and quince paste. Donuts, muffins, caramel slice, strawberries, pistachios, kale? Cronuts? Take a moment to think about what food or beverage makes … Continue reading

U = update

If you’ve been following the Capturing CF Facebook page you’ll know I’ve being taking part in the A-Z of Cystic Fibrosis. If you haven’t been following the Capturing CF Facebook page then I encourage you to check it out!

Guinea pigs and glow worms

Guinea pigs and glow worms

Guinea pigs, Dave and I have at least one thing in common – we all know what it’s like to subject our bodies to scientific experiments for the greater good. Dave and I don’t have enough fingers and toes to count all the clinical trials that we’ve been involved with over the years. What can I … Continue reading