CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • Welp, I’m back again folks

    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…

  • Ear Pain…That’s Weird

    I saw the nurse practitioner at my primary doctors office today because I’ve been having pain in my right ear and upper jaw for about 5 days. She said it was a little red and cloudy. The cloudiness is more of an inflammation/pressure response than an infection. I left there with a sore booty from a solumedrol steroid shot and two prescriptions, one for a prednisone taper and one for oral Bactrim.

    I’ve never seen this nurse practitioner. The nurse asked what the issue was today. I told her about the ear and jaw pain. She asked how my breathing was because she could hear me wheezing. My response was, I have cystic fibrosis and pretty bad asthma and that I’m only working with 31% lung function. She said oh, ok. It’s funny how I don’t notice my normal everyday wheezing unless it’s really loud and/or I can feel the rattling. My regular doctor isn’t in the office on Monday’s so that’s the reason I had to see the nurse practitioner and her nurse. My regular doctor knows all about me. Then the nurse practitioner came in and asked what was going on today. She also asked if I was having breathing problems. I told her the same thing about why I am wheezing. She said that’s your normal? I said yep, that’s what I’m working with. She looked in my ears and then we discussed my options. Penicillin and Amoxicillin are usually the go to antibiotics for ear infections. I told her with my history of being allergic to penicillin as a toddler I would like another option. I told her what my usual oral antibiotics were but of course most have some sort of side effect. Levaquin gives my bad arthritic joint pain. Bactrim and Cipro are both somewhat hard on my stomach but they are doable. We decided on Bactrim for 7 days along with the solumedrol shot to get steroids started and then a prednisone taper starting at 30mg.

    I told her I appreciated her listening to me so she could better determine what to put me on. She said she appreciated that I know what I’m talking about and I know what helps me. I will call for another appointment to see my doctor if I’m not feeling better in a few days so she can look in my ears again to see if there has been any improvement. Then we can then discuss what the next option is. I’m going email my CF nurse so that my doctor knows what’s going on. Oh and the nurse practitioner did know who my CF doctor is and she said she really liked him. I said me too, he’s great!!

    Until next time…