Wednesday, September 10, 2014

Sick Update

Just a Lil Update:


If you haven't read my last blog, you may want to do that so you know what I'm talking about (read it here!).  As you know I had a lot going on last week with the clinical trial, picnic, and then getting sick. Monday I called Doc and got some oral antibiotics prescribed. I'm now on (month's worth of) Cipro and doing a two week round of inhaled (neb) Tobi. As you know I've always done Tobi my whole life on and off every other month switching it out for Cayston. Since doing this clinical trial a month and half ago I've been off antiobitic nebs to test the effectiveness of the new drug. Now, it just so happens I had been doing great since off the nebs. Even on Thursday of last week I had a high lung function that hasn't dropped at all soince been taking off the nebs. But unfortunately, I caught something over the weekend and got sick.

Of course the first thing that comes to my mind is "Oh no, I hope this doesn't hurt the trial if I'm getting the real drug". But I gotta remember that we get sick and 6 months is a long trial and things happen. They take all that into account. So phew. I love this trial. In fact, even though I'm sick, I'm already starting to feel better. I only have been doing Tobi nebulizers and oral cipro antibiotic pills for 3 days now. I've been sick for 5 and usually it lasts a lot longer and I end up needing IV infusions to battle. So hoping this is a quick turn around!

My immune system may suck and I catch everything, but at least right now my body is fighting this without IVs. Cipro is pretty heavy duty stuff though and inhaling Tobi for the first time in almost 2 months is really making a difference.

ONLY downside is the Cipro. I'm very allergic to 3 of the main antibiotics that they use to fight psudeo (psudeomonas aeruginosa) infections in CFers. Keflex, Levaquin, Bactrum. Yep so pretty much every big antibiotic they use to fight I can't take. So I take Cipro which is related to Levaquin, but I can tolerate it. I've had some minor problems in the past. 1 time I had a small rash for a few days. This time I'm getting headaches. And the headaches suck!!!!

But I can stick it out for a while until my lungs are better. I can tell the Cipro is working, I just gotta deal with the headaches until I'm better. 23 more days (hopefully once I'm better we can discuss stopping the med early). I'm not ready to call Cipro quits and have to find a new way to treat the infections, because honestly I'm limited with what the docs have left that they can do without those antibiotics. And who wants to exhaust all their options (I'm only 29).

So I apologize ahead of time to everyone I'm not very responsive to, my lack of communication, and everything else. I'm trying to get better, keep up with my meds, my homework/classes, and deal with some headaches. But I'm doing it without the hospital and that's the main thing.

Pic: Is from last time I was in the hospital in 2013 (November). Andrew's always right there for me, love him!

So a big thank you to Andrew! Who not only works full time, goes to school full time, but has been doing all the errands for me and taking care of me. In the last 2 years we have been together, he has dealt with so much. Actually (click here to see what he's gone through), I posted a year in reveiw with pictures and it shows the best and worst that we went through last year! He nevers gets upset, he just always wants to help me. He is simply amazing and I'm so lucky!

So I'll keep y'all posted on how I'm doing and keep those fingers crossed my allergic reactions don't get worse and I continue to improve!




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