Monday, December 01, 2014


A representative from the company that makes Meagan's therapy vest came by the house tonight. One thing they did was press some buttons on the machine to see how many hours it had run since we started with it in 2008, bringing up the display above.  The number was 2199 hours. Roughly the amount of time someone would spend at a full-time job in a year.

This number represents an investment -- from Meagan, from Kristin, and from Katherine and me in Meagan's health.  For more than 2000 hours, Meagan has sat with a vest vibrating her lungs to shake her up.  Each session is about half an hour, so this means shes has done this about 4000 times.  While she is almost always very cooperative, this is almost always at the request or reminder from Kristin and myself. Almost all of these sesssions are accompanied by one to three nebulized medications.

In this time of Thanksgiving, we are thankful that this and other treatments have helped keep Meagan clear of more serious impacts of Cystic FIbrosis. And that, we are on the verge of treatments that will help Meagan and others be free from both these symptoms and these hours of treatments.

This Thursday, December 4, I will be doing my own treatment, taking part in the 26th annual Stair Climb for Cystic FIbrosis.  I will climb 56 floors, 1120 steps, about half the number of hours Meagan has logged on her vest machine.
I invite you to support me, by climbing with me, supporting me financially (perhaps $1/floor?), or your continued thoughts and prayers.

We wish you all a peaceful and joyful Christmas season.

John McGuinness

BTW: If you have questions about the recent announcement of the CFF's transaction on the royalties for Vertex medications, I tried to address those here:
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