CIPRO was added to my previous RX for the colonized pseudomonas in my lungs. It is an atibiotic which kills everything in my system good bad or indifferent. This is GOOD, because the bacteria that makes me sick should reduce greatly enough for me to feel “normal” again. This is BAD because the bacteria that keeps me healthy and maintains my immune system is also killed off.
While I’m in this process, one of my sputum cultures grows psillius, which is a black mold. AHHHHHH! First thought, WTF?? Second thought, call the DR. While calling the DR. I look up the mold on the internet to find a LIST of symptoms I’ve had the last 2 months followed by the words FATAL. O FU$% THAT!!! I already have one death sentence, and this one cannot be happening! After repeated emails with the Dr., she insists I take the CIPRO for 2 weeks, and not stress the mold. The main issue is the pseudomonas. Really? I’m not so sure I like that plan. Ok, so I’m taking the CIPRO, but what about my symptoms? What about this mold? She explains that the mold is not something that is considered a pathogen (causes disease) and that it showing up in my lab is not something to freak out about. OK, so yes, of course I freaked out! DUUH.
Previously, I have had clinic staff say inappropriate things to me, which has not paved a way for me to think clearly, or take advice from anyone in the clinic. The last couple months I’ve been making major effort to listen and follow the Dr.’s advice, ask questions, and do what they say. I decided, instead of being so resistant and challenged by a system I am not fond of, just follow the Dr.’s advice and take the medication. No matter what crap has been said to me, she is my Dr. and I cannot discredit that. Nonetheless, I still feel that there is a lack of compassion and emotion in the clinic.Instead of continuing on a SELF DESTRUCTIVE path of AVOIDING the Dr., complaining about PAST situations at the clinic or whatever else I didn’t like, I decided it’s time to seek out a second opinion about my health in general at the place that cared for me from birth to the age of 20, Stanford Medical Center, which is a CF research Center. I needed a fresh face, a fresh point of view and human with an outside view of who I am, what CF is doing to me and how to approach being an adult with CF. I let my Dr. know and she seemed fine with my plan.
After jumping through some loops and SERIOUS effort by the Stanford staff, I was seen in their clinic last week. I brought along my man again so that he could evaluate ME, the clinic and staff in comparison to our previous visits elsewhere. He was highly impressed and could see why I act out of sorts in my current clinic. The staff was very helpful, listened to my concerns and point of view and offered helpful information. The Dr. who completed my evaluation obviously realized I am not the easiest patient to work with and also took my standpoint into consideration. He was very specific about his concerns, how he could help and what I need to do to get to the point I want to be. At the end of the day, he RX a treatment plan that includes 3 types of drugs and EXERCISE. SIIGH, I'll say it again, I hate pills and drugs. Exercise, I LOVE.
This Rx came from Stanford, who in turn has sent the info to my clinic and hopefully SOON, fills the Rx and I can start the regiment. Unfortunately, it doesn't seem like my clinic is taking my willingness to participate seriously. As I stated, I have been resistant a long time, and the fact that I am TRYING and I am still am not getting results from my clinic, is rather FRUSTRATING....So, I must be patient right?
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