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 say? We’re just altruistic that way.

When I reminisce about more than two decades of clinical trials, a few highlights fondly come to mind.

1. Beep tests. Beep tests. Beep tests. More beep tests. And, yes, you guessed it – even more beep tests.

Beep tests start off at geriatric snail pace so that it’s actually a challenge to move slowly enough – like driving in a school zone. The test steadily accelerates so that before we know it we’re in Usain Bolt territory. Avoiding pedestrians, wheelchairs and IV poles in the hospital corridor gets us bonus points.

At intervals during the test we are asked to rate our breathlessness on a scale. For some crazy reason they don’t have an option named: “I am too breathless to tell you how breathless I am right now”.

We also have our oxygen saturation measured at the end of the test. Seeing my sats dip below 90% certainly validates my decision to stop running.

2. Questionnaires.

These clinical trial questionnaires are single handedly responsible for the felling of a few trees. They take about as long as it takes to enjoy a latte. A coffee run is therefore an essential prerequisite to the questionnaire experience.

I’m not a huge fan of the questionnaires. They ask the same thing several times and in several different ways so I feel a little bit interrogated by the end. They also ask me to repeatedly estimate. Estimating is not my strong suit. I end up agonising about whether I cough up 50 or 60mls of mucus per day as if the world will stop spinning, topple off it’s axis and get sucked into a black hole if I choose the wrong option.

Photo on 8-07-13 at 4.26 PM

3. Free stuff!

Perks are few and far between. We do these trials out of the goodness of our hearts and the paperwork we sign underscores this. However, I have scored at least two nebulisers that were integral to administering the medication being studied in the clinical trial. You’re looking at roughly $2000 worth of nebuliser pump in this picture. Hell yes, it was worth signing up for a four month clinical trial for those.

4. Radioactivity.

I’ve inhaled a number of radioactive nebulised solutions over the years. I’ve then listened to a number of “Hamish and Andy” podcasts lying motionless under the scanner and trying not to think about or scratch my itchy nose while the radioactivity is mapped. Thus, I also have something in common with glow worms.

5. The no physio trial.

About 10 years ago an unknown group of people suddenly had a conniption and thought: “Hang on just a second, we don’t have any evidence that chest clearance actually helps people. No one has ever done a trial to prove this beyond a shadow of a doubt. We don’t have any pretty graphs, tables, stats or any published papers on this subject. We’d better do something about that pronto.” Participants were randomised to either a chest clearance group or a no chest clearance group. I was randomised to the no chest clearance group. “Hallelujah!” was my initial reaction. “I have a bona fide reason to skip treatment.” It was just like Christmas. Every day. Until I couldn’t breathe and I got sick. I assume this trial proved what people already knew anecdotally – chest clearance is kind of essential, you know, like water and sunlight and gravity.

This brings me to one of the most exciting pieces of news I’ve had to share all year. A new clinical trial opportunity has cropped up – the Holy Grail of clinical trials. This time, our participation is not at all altruistic. There is not one atom of our being which is doing this trial for the greater good. We are unashamedly doing it for our own good. This trial involves my obsession: the mighty Kalydeco in combination with a brand spanking new and very exciting chemical called lumacaftor. I will be referring to the combo as Kalydeco Plus until Vertex comes up with another name for lumacaftor which isn’t such a mouthful. Kalydeco Plus has been developed for people with two copies of the F508del mutation. That’s us! Dave is having his screening appointment tomorrow to make sure he ticks all the boxes they want him to tick and that he doesn’t tick any of the boxes they don’t want him to tick. I’ll be having my screening appointment in about ten days. We would appreciate you crossing everything you can that we are both accepted for this trial. Stay tuned.


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