Monday, September 8, 2014

Antibiotic Free Streak Over

Clinical Trial & Uh-Ohs:

A lot happened this weekend. Thursday was my clinical trial and yay!!!!! my lung function was still same. It's 55% by Docs standards, but by the trial standard it would be considered 60 still. So don't freak out and think my lung function has dropped since I wrote the Blog Post Welcome to the 60s (read it here). So that's good news. In 2010, I was struggling in the high 30s and low 40s. Then in 2011 I switched to Doc B, also I was done with school. I had more time to focus on meds and exercise. My extra effort and my proactive doc brought my lungs up to 58  in 2011. And Thursday I was happy to see it at the same place. No decrease in 3 years!!!!! However, I've gotten into the mid 60s before. But that was only after hospitalizations and IV treatments.

Well, in the last year I have been enrolling in a couple clinical trials. Most trials are 6 months long. I'm  currently in one now. Its a 3rd phase trial and the 2nd phase trials showed promising results. No, by clincal trial I don't mean cure. However, each one helps us gain some lung function or make our life easier. For example this on is an antibody that attaches to our psudeo bacteria. The trial is to show how long patients can go without our normal/daily inhaled nebulizer antiobitics after receiving the new drug. The new drug is an IV given once a month. Of course, I have no idea whether I'm receiving the actual drug or placebo.

BUT, I'm happy that after a month with no antibiotic nebulizers for a full month (When I normally have done 2 antibiotic nebs a day since, well, forever.) my lungs actually went up 1%. Which means I'm getting the new drug and it works OR I'm just really on top of my health this last month. AND EITHER way I'm happy with that.

So the trial appointment went really well and then Saturday I went to a picnic. It was really fun. Andrew and I made Tie-dye shirts, had some delicious steak kabobs, and even won the karaokee contest (which was a bdubs gift certificate)- love me some bdubs!

Pic: Andrew's Spiral on his shirt turned out awesome! Mine wasn't tight enough and I didn't get the purple in the middle enough. But it's still cool.

[side note:I love tie-dying shirts! My mom did it when I was younger for craft shows. I was suprised I remembered how to twist the shirt to make the swirl on Andrew's. If you want to know how to tie-dye, its really easy to google and follow instrustions. Here's one easy page to follow: How to Tie-Dye-a-Shirt!]

But BAD NEWS BEARS... Thursday night I had a tickle in my throat, my eyes were watering, and my nose was stuffy. I took some benadryl and was fine friday. No big deal I thought... allergies. But, saturday I went to the picnic and then before bed that  night I started to get a stuffy nose, my throat hurt a little, my eyes were watering, and my chest felt a little heavy. It just hit me like a ton of bricks. I couldn't sleep in my bed (laying all the way down). I slept on the couch propped up so I could breathe. Which I sleep slightly propped to begin with, but not in an upright position. lol. I only sleep basically sitting up when sick. Sunday (yesterday) I still had a off and on stuffy nose. My eyes and throat were better. But my lungs were heavy still. It felt like an elephant was sitting on me and I kept ha So yep, if I don't react right away I'd end up with pneumonia.

Pic:  Andrew bought Mario Bros. Chicken Noodle Soup and then added stuff to make it taste not like its from a can, see the brick and mushroom, there was a cloud, flower power, etc  :-) 

I've been out of the hospital since November of 2013 and haven't had any antibiotic (oral) meds since January, so I was bummed I had to call. But I had to catch it at the beginning, especially since I have to get my stomach tube hole surgerically closed now. And surgeries don't happen when your sick!

It's still leaking and Doc said it needs to be shut, since my weight is down to 101. I've gone from 108 to 101, because it leaks and I'm cautious with eating/drinking certain stuff. So I better get my health and lungs in the best shape before I have to have surgery! My surgeon didn't want to do the surgery in the first place, so gotta make sure everything is going well.

So much happened since Thursay! At least the the trial is going great and I already have another one I'm going to do once this one ends in November! What bad timing for me to get sick and if I'm not careful I'll end up in the hospital (and I can't miss classes and put my life on hold again..ugh), so I'm gonna try really hard to get better fast. Which sadly means adding oral antibiotics (Cipro). I also have to watch for any allergic reaction signs, I have gotten rashes with Cipro in the past. But since I'm allergic to pretty much all the major antiobitic families that they use to treat CF patients with psuedo.. I kinda have to hope for the best.

So here's to being thankful the good and hoping for the best with bad.


  1. The lung function tests sound awesome! Sorry to hear that you're back on antibiotics and will need surgery to fix your stomach. Glad that you were able to catch it early so hopefully you'll be better soon.

    1. Thanks Kym! Yeah pretty mixed feelings. Yay, good clinic, bummed I got sick, yay getting my stomach finally fixed, bummed to have surgery. lol Oh and I liked your "Around the World" Blog. I'll be posting mine next week! :-)

  2. Thanks! I'm so glad you enjoy it. I just write it as it is. You have just made my week! :-) Have a great week!