thanks again for Amy! You sure know how to make a girl feel appreciated
I feel so lucky and blessed to have access to this wonderful drug.
Becky, I would go for it but I would try to find care for your child. Unfortunately when I was participating at least they wouldn't reimburse for childcare but you should ask anyway! I think you'll find the experience really rewarding. It's nothing like being hospitalized or even like a clinic appt because you have your coordinator there walking you through each step and really being your advocate. Mine went out of the way for me, delivered my vest to my hotel, opened all doors, pressed all elevator buttons, answered all height and weight questions, etc. It's like having a concierge sort of. Then to top it off they give you a generous budget for food for the day. And I believe living as far as you do, you could request and likely win getting lodging for the night before so that the travel isn't too taxing on you all in one day. The "mommy breaks" have been nice and beneficial to my health. Staying at a 5 star hotel was a nice perk and made it quite comfortable.
Funny story when I was in Ph. 2B for 770. The directions AT THAT TIME NOT ANYMORE THOUGH were to take the medication WITH a HIGH PROTEIN SNACK. Each night when I was at Hilton I'd order my shrimp cocktail to have with my little blue pill. Anyway, it was all a lot of fun and I have lifetime friends from the experience...3 of them. Two different coordinators from each Phase I was in and the director of the center. I enjoy having contacts in the cf world outside of my own clinic in case I need a 2nd opinion about something.
I really feel like I have been in the best of care. It isn't like I had been led to believe at all...like we are the guinea pigs and only get involved when it is last resort. Rather EVERYONE treats me the way saveferris does. Very thankful and appreciative and authentically an advocate for what is best for me.
I would do it again in a heartbeat. A plus is that Vertex is known in the industry to be one of the most generous yet. I think you will GET so much more than you GIVE. Also, if it does give you benefits or even if you get placebo but the results are good it pretty much does guarantee you a spot in Ph. 3 and if it's like 770 there will be more people wanting to participate in PH. 3 than spots so you may want to go ahead and claim your spot now!
