On Monday I had an appointment with my doctor. Overall the appointment went quite well. I'm at 94 lbs (my bikini weight!). My lung function went down from 35% to 31% due to an infection caused by a cold. So I'm being given more Levaquin for that. I'm just glad my lung function isn't in the 20s.
I have two ulcers in my nose due to the prednisone. I already do nasal irrigation to keep germs out but to protect the open sores I have to put KY Jelly on them. I had to laugh when the doctor was trying to tell me what to get. He wouldn't just come out and say "KY Jelly". I was just telling me not to use any petroleum based products and that I needed a water based one. Then he said that I could find what I needed in the Women's Hygiene section of the store. I finally smiled and said, "You mean KY Jelly." The guy is new to the CF team (cute but new) and isn't used to how blunt I can be, or the fact that he doesn't need to beat around the bush with me.
I'm also being referred to a Gynecologist since he believes the prednisone has screwed up my cycles (twice a month is brutal) but wants to rule out any potential issues. And he's lowering my dose of prednisone since my mind racing problem is becoming more frequent. Basically, my brain chemistry is very sensitive to hormonal changes and steroids are hormones. If I can't get the mind racing under control through natural means (diet, exercise, routine, getting rid of unnecessary stress) then I'll need a mild sedative to slow my mind down at night so I can sleep.
Still waiting on the referral to the transplant center. These things take awhile to go through. So I'm waiting to start the waiting game.
Finally, the doctor gave me something for the thrush in my mouth. It's an annoying consequence of having to take so many antibiotics. I have to take the antibiotics to fight off the infections caused by having CF. But these antibiotics kill all the good bacteria in my body, resulting in thrush or yeast infections (which are worse than thrush). Usually, I can get rid of the thrush using the potent form of Listerine (28% alcohol and tastes horrible) but this time it didn't work. So the doctor gave me Nystatin. The bottle says "cherry-mint flavor" but it's just gross. I can't taste any cherry or mint. But hey, if this stuff gets my tongue to go from white to pink than taking it will be worth it.
So that was my appointment. I guess most people wouldn't think it had gone very well. In my history of doctor appointments, this was a good one. I'm not sick enough to go to the hospital, and don't need IVs. My doctor listened to my list of complaints (I really did bring in a list). He treated each one as a valid issue and provided answers to the best of his knowledge. Doctors like this are rare and the fact that I have three such doctors on my CF team makes me feel confident in the quality of care I am receiving. I am a very satisfied patient.