CF Happens

After getting the shot of solumedrol in my booty at the primary care doctors office on Monday afternoon I started taking the Bactrim that night and started the prednisone taper Tuesday morning. I have been very short of breath, more than usual. I sent an email yesterday afternoon to my CF nurse asking to go up to 60mg of prednisone and tapering from there and hope that I could get some relief. Well of course my doctor is out of the office on vacation and it’s a holiday weekend. She asked if I could call my primary doctor and ask if she would call in the upped prednisone taper. First thing this morning I put in a message for my primary doctors nurse. She called me back around noon. My primary doctor is out of the office with food poisoning AND the nurse practitioner is on vacation until next week. So back I go to my CF nurse. I left a message for her asking if there was anyone that could write the prednisone prescription. She called me back and of course everyone is out of the office until next week, after the holiday, except for one nurse practitioner. Thankfully that nurse practitioner called me and we discussed what I thought I needed and what she was thinking. She is adding oral Levaquin to the mix (yay, not!) because she doesn’t think Bactrim is the correct antibiotic. I will finish this course of Bactrim since I am already on it and it’s only a 7 day course. I’ll add the Levaquin tonight or tomorrow, whenever I pick it up. I will be starting 60mg of prednisone tomorrow morning. I will do 60mg for 3 days, 50mg for 3 days, 40mg for 3 days, 30mg for 3 days, 20mg for 3 days, 10mg for 3 days. If I need to adjust the prednisone and extend the higher dose, I can do that on my own.

Unfortunately, prednisone doesn’t seem to help open up my lungs/airways like it used to. It’s the same thing as far as antibiotics go. I’ve had to use both prednisone and oral antibiotics so often for the past 43 years that’s it’s a given that they won’t work as well over time. Starting the Levaquin and higher prednisone is to get me over the holiday weekend and hopefully get some relief and get to breathing better. I avoid the ER like the plague, especially on a holiday weekend with my CF doctor out of town. That’s not to say that if it came down to it and I needed to go that I wouldn’t go, but there would be some kicking and screaming involved in that whole operation. It’s just very hard to get what you know you need while in the ER and/or being admitted when your CF doctor isn’t there speak on your behalf since he knows what has worked in the past and what our go to’s are. Holiday weekends in the ER are the B squad at times and by that I mean that a lot of times it’s people covering for regular ER doctors, as well as the pulmonary doctors. It’s frustrating to say the least for someone who like me who actually knows what I’m talking about.

I will follow up with my CF doctor on Wednesday when he’s back in the office and see how I’m feeling and what we think the next step needs to be. My CF nurse and I both agreed that my CF doctor isn’t going to be allowed to go on vacation over any holidays anymore just in case I get sick and need him, considering I ended up in the ER on Christmas Eve. I’m just kidding of course because he is allowed to have a life outside of being my doctor. haha. I’ll keep you posted.

Until next time…