Wednesday, April 27, 2011

PICC is Gone!

Good news! My FEV1 was 113% and I the PICC is gone! I met with the physician's assistant at my CF doctor's office and I asked a ton of questions.

The PA took my questions to the doctor. He said that, if I want to be aggressive, I can go back on a bi-monthly nebulized antibiotic. My understanding is that aggressive treatment leads to better health, so I agreed, (even though I don't really want to do another another neb!). Luckily, instead of going back on Colistin, they want to put me on Cayston. I say "luckily" because the Cayston only takes three minutes, three times a day, is portable, and the timing is flexible - I just have to do it at least four hours apart, so I could do it one day at 8:00am, then at 5:00pm, and then at 9:00pm, and then the next day do it at 8:00am, noon, and 5:00 pm, etc.

I also asked about the possibility of doing tune-ups in the future. As much as I hated being on IVs, I must admit that they made me feel awesome. My cough and post-nasal drip are totally gone. The PA agreed that it may be worth going back on IVs once a year even though my PFTs are fine. So, despite all the complaining I did during these past two weeks, this is something I am definitely interested in. I want to see how long my cough stays away. If it's a significant period of time, I think it's worth two weeks of suckiness. Not only because the cough is annoying, but also because I can't imagine that there's not some sort of lung damage going on when I have that cough, despite steady PFTs.

Of course, this morning I woke up with a sinus headache :P I made an appointment with my ENT for tomorrow because you would think two weeks of IV antibiotics would take care of my sinuses!


Smilen Champ said...

My name is Jenna and i came across your site. You are an amazing, inspiring hero, and person. I was born with a rare life threatening disease, and 12 diseases/medical conditions. I love it when people sign my guestbook.

Masochistic Terminological Inexactitude, DAWG said...

Hi, Kristen. I'm Katie. I was Googling "Cystic Fibrosis and Pregnancy" and came about your blog. I just think it's amazing that you actually had a kid with your Cystic Fibrosis. It's inspirational to me. I'm only 16 and I'm wanting to conceive. I know it's a bit young but my mother says that the women in our family were born to have kids and oddly enough, all the women got pregnant around my age lol. Really though, your blog is inspirational to me and I wanna thank you. I too have a mild case and my PFT's are %91 and the doctor says that my lungs sound great. However, I just got Carbon Dioxin Poisoning and I'm finally starting to get over it, so I'm planning to try to start conceiving whenever I'm better (and when my boyfriend is finally ready lol) But again, thank you and I wish you the best of luck with your health and your family :)

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