While I was hoping this past week would be less stressful than the previous week, unfortunately it was not so. I got a call from our friend Leif on Friday, that one of the greats, Scott Lui had passed away. Some may know that Scott had battled CF his whole life, and at the age of 32 had a double lung transplant that gave him another 5 years. He was truly one of a kind, and we all will miss him greatly., The trial let me head home to be with the soccer team Friday night, and we cancelled our game and instead met at the Roanoke Tavern to share friendship and some good Scott stories. The one thing that will always resonate with me, is that how graceful and bravely Scott approach his disease, and he learned quickly in life that time and friends are precious and that you attack each day with a zest for life. He leaves a giant hole in our hearts, and our thoughts and prayers go out to Kristen and his twin girls Ruby and Stella that are left behind. Scott really was a gift to everyone who had the luck of crossing paths with him.
On the trial side of things, it's becoming a little more routine. I think we figured out the BP problem, it turns out that my BP is 12-20 points lower when taken manually than compared to the Blue Octopus. The nurse did a very thorough experiment this morning, measuring multiple times, and we came to the conclusion that I'm a manual kind of guy going forward. It seems that side effects of some early headaches are going away, so if this is the worst of it on the drug, I'm doing good. (Knock...knock)....Today Nancy is my nurse again for my all day testing, she is wonderful and besides the fact that I have an IV in my arm to simplify blood draws, it's really not that bad.
I’m off to lunch, due to not being able to eat +/- 2 hours of the trial drug, my breakfast got screwed up so I am starving...
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