Last Monday, I had a doctors appointment with Dr. Light. My FEV1 was 50%. When he first met me a good five months back, I was at my worst with FEV's in the 40's. This is a good sign that my numbers are higher, but of course not where I ultimately want to be number wise. We also discussed my sputum results which weren't good. MRSA has risen from the dead, pseudomonas aeruginosa was the life of the party as usual, and a newer bug that popped up was pseudomonas fluor-putida. Great, now the gang was all here, I thought to myself. I usually only culture pseaudomonas aeruginosa and the last time I had cultured MRSA was back in 2008. MRSA is sneaky though it can go to sleep and wake up whenever it wants. Keep in mind that these bugs are Cystic Fibrosis bugs only and no other "normal" person can catch what I have. Point blank, I'm not contagious. It's in my lungs and the bugs fancy my living quarters of CF lungs rather then clean fresh healthy lungs that "normal" people have. Just part of the joys of having Cystic Fibrosis, you never know what's cookin'.
Plan is to do Cayston via Altera nebulizer (3 times a day) for two months and then on the third month switch to Colistin via eflow nebulizer BID (twice a day) and continue that cycle. That will be my new nebulizer regimen as far as the nebulized antibiotic goes.
I started taking Doxycycline Hyclate 100 mg for the MRSA. One tablet twice a day. I did that for two days and for some reason it didn't go too well. This is the 2nd time that I have been on doxycycline and this time I was nauseous and throwing up both from the front and back ends. I know that oral antibiotics can be hard on the body, but to be in a fetal position all day was not a good response so I stopped taking it. Bactrim was ordered and I started the oral pill on Friday. I've been taking it twice a day and praying that the oral pill treats the goodies in my lungs. I don't want to have to resort to the intravenous way of treating the infections. Sometimes I don't have a say and my body is the one that has the last word. I've been going 5 months strong without needing a PICC line placed for intravenous antibiotics and would love to make it to the one year mark.
I had run high grade fevers last week ranging from 101.2, 102.5, to 103.7. Fevers often mean infection. Fevers are always uncomfortable because it keeps me from taking care of what I need to do most, which is my breathing treatments and airway clearance. When I have high fevers, it's like taking peanut butter, bacteria, and a 450 degree oven and baking for an hour here and there throughout the day. Basically a recipe for disaster! I called Dr. Light and he instructed me to switch every 4 hours between Tylenol and Ibuprofen which really helped. That and 2 cool showers every day seemed to do the trick. Luckily, I have been fever free as of yesterday, but I still know that I have an infection that needs to be treated.
Side note: I love that I am constantly learning from Dr. Light. A fun fact that he shared with me is that milia is common in those with Cystic Fibrosis. I started to recently notice a few small whitish bumps on my shoulders. He mentioned that because our skin is so salty it is common for milia to form on the skin. He told me to stay away from rich oily soaps. I've officially turned into a bar soap girl.
That is all for today. ::Splish...Splash::
