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Thursday, March 17, 2011

I haven't been at it that long

I read a lot of CF blogs, people closer to my age and blogs that mommy's and daddy's write for their littles. I love these blogs.. parents who follow strictly regimented schedules to get multiple vest treatments in, nebs nebs and more nebs... pills multiple times a day... It's tough... and I still have not quite acclimated to this schedule... I forget to do nebs... and I hate the vest.

With the sudden drop in lung function, I committed to doing the nebs, consistently... and I have followed through thus far. I committed to changing my diet. I have entirely followed the recommendation of the cardiologist and CF team.

Today I went for a follow up PFT. I was emailing with my doc yesterday and said, I'm really not concerned about the PFT. It may not have gone up very much, but it DEFINITELY did not go down... and down it went 5% for my FEV1 to my lowest PFT ever and my small airways dropped about 30%.

I'm pale with grayish lips and a drive to get better... what does that mean, you might wonder... the hell if I know.  I did my regular exercise tonight, with struggling, but I completed it... i ate my high protein dinner...

I'm waiting to hear if we're doing home IV's or back in the hospital... More to come.


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