Originally published on Monday, 16 November 2015
Today was my second to last visit to the hospital in regards to the drug trial.
The visit consisted of:
- Body weight/BMI
- Vital signs
- Body temperature
- Urine collection
- Blood sampling
- Lung function
- Sputum sampling
- Sweat chloride assessment
- Pulse oximetry
- CFQ-R questionnaire
In 2 weeks time I will be attending my last visit to the hospital.
This has been what feels like a short journey for me. Simply because I’m a very busy man and time flies when you’re busy.
Though as I said, I’m pretty sure there will be more to say on this trial in the months to come.
As an interesting last word to today’s news, through making friends with many members of the CF community around the world, I’ve had many good conversations with people who ask how the trial is going.
One conversation lead to the interesting mention that for CF people with the F508del mutation, there is a drug on the market called Orkambi.
Information about this drug can be found on this website: www.orkambi.com
There is a video on the website that elaborates on what this drug does.