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. Which suits me just fine because my lungs are stable and currently require minimal supervision. My bowel, liver and pancreas not so much. But hey, let’s focus on the positives.

Dave is in an interesting position. He didn’t take any trial medication for a few months to enable him to take an anti-fungal medication (Itraconazole). In order to transition over to the marketed Orkambi dose he apparently must be taking trial medication at his last trial visit. He will shortly cease Itraconazole and resume ingesting trial medication. In essence, he is able to begin Orkambi afresh, as though for the first time.

I learned yesterday that we will be able to pick up our Orkambi from our own hospital rather than travelling to another hospital where the trial was run. Somehow, unbelievably, without any hassling from me, all of the documentation has been completed, Orkambi is listed on our pharmacy formulary, and they are primed to cheerfully give each of us US$64,750 worth of drug four times a year as a thank you for taking a chance on Vertex’s lil’ clinical trial. No, Vertex, thank you.

Meanwhile Dave is back in good health again. After two hospital admissions, nine weeks of intravenous antibiotics, Itraconazole, steroids, extra physio, a critical balance of exercise versus bed rest, and eating even more than usual – his stats are acceptable and he is functional once more. Being functional is what counts of course. I mean, the really important thing is that he can vacuum the house again, am I right?

It’s super lovely to have him back in the best shape possible.

Love in the sun




2 thoughts on “O Day

  1. Hi Jeanette
    So glad that things are looking up. Another well written and informative yet humorous piece.


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