My thoughts and feelings on different life experience's and being a Mom living with Cystic Fibrosis.
Thursday, July 7, 2011
Update on Clinic
I went to clinic last Wednesday, just haven't had a chance to post about it until now. The results were nothing good. My PFT's were down again from 35% to 32%, which is not a lot but I have been steadily declining since April. We have 3 CF doctors in our office, 2 of which I have been seeing since I transitioned to this clinic back in '08, but the other one just came on a few months ago. This was my first visit with her, I like them all very much! I had some extensive cultures sent in when I was there in May, those so far are coming back normal, and by normal I mean only growing the bugs I normally grow. Although they test and grow these for 3 months, so the final report won't be until August. So still no clear reason as to my decline. Dr. Lehman wasn't comfortable doing nothing about the decline and fevers being back, but she didn't think it warranted an admission either. So the plan is oral anti-biotic (Leviquen)for 2 weeks, and return for repeat appointment. She wanted to give a few things a chance to work, 1 being the anti-biotic, 2 my recent increase in exercise and she asked me to add more to it making it 5 days a week, and 3 the recent fix in the house. So I go back next Wednesday, if my numbers are the same I think she will admit me and then they want to do a bronc-scope, where they put a camera down in my lungs and take sample's from deep down in. This is pretty much the last test that could give me any sort of answer as to why the decline, if it shows nothing unusual then I think I will be at a place where I have to accept it as disease progression. It's a hard pill to swallow, and I am not willing to accept that is true until all options are exhausted. I have always and always will do everything in my power to fight this.
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