Friday, March 7, 2014


I'm sitting waiting to see my doctor.  I'm typing on my phone while I text back and forth with my husband.  

I'm angry. I really wanted my FEV1 to be 56% today. It was 51%. I really want my FEV1 to get back up to the mid 60s, but at this point, I don't know if that is possible. 

I'm working so hard to take care of myself I barely have time for anything else, and I still haven't improved, only maintained.  

I'm angry I ever participated in the Vertex trial (and I'm still working on the big Vertex trial post... It's hard to write about). I'm angry that I'm not the only one this happened to. I'm angry I gave up something that was working to keep me healthy to try something else, and that something else made me worse.  I feel really dumb for not sticking with what was working.  

I'm angry that taking care of myself is taking so much time.  I miss my friends. But I'm so focused on getting better I don't have much energy left after all my treatments, IVs, and exercise. 

I need to take my anger and frustration and channel it back into doing everything I can for my lungs.  I'm determined to get better.  I won't accept these numbers. I'm going to keep fighting. I won't ever give up. 


catchastar said...

I am sorry that the trial did not work out for you, but please know that without people like you who are able to participate and choose to do so, people like me will never get a chance to try new medicines. I am grateful to you for your participation and very hopeful for you that you are able to get your pfts back up!

Chris said...

We're here for you, Carla! It's not your fault for participating in the trial. I bet a lot of people thought it would help. If you need any help getting back on track, let me know. We could work out together or I could call to remind/encourage you!

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