CF Happens

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

recent posts

  • Update From Lock Up – Day 8 (HINT HINT) We Have A Plan In Place

    The new week in lock up means a different attending/rounding doctor.

    The attending came to see me this morning. He wanted me to do lung functions to see where I’m at. My last set of lung functions were from my sick visit Thursday the 27th before going to the ER on Monday the 31st. My lung function was 26% and 28% at that sick visit. I did a bedside lung function this morning. All 3 tries were 27%, exact same percentage and liters every try. I’ll take consistent numbers at this point with how much my lungs have been through this last week. Haha

    The full CF team meets every Monday to talk about different patients cases. Today, I was a topic of discussion, obviously. Haha

    We have a plan in place y’all!! Are you ready for it? I’m going HOME tomorrow!

    Here’s the treatment plan going forward…

    I’m going to continue IV antibiotics (Zosyn) at home. My last dose of Zosyn will be Monday the 14th. This will be a total of 14 days of the Zosyn. I’ll do my normal outpatient labs while on IVs.

    Next thing on the list…the prednisone taper. I did 50mg oral prednisone today. I will do 50mg for 5 days (includes today), then drop 10mg every 5 days with 10mg being the last step down.

    I’ll see CF clinic at some point after I finish antibiotics, maybe waiting until the prednisone is done. To be determined. I’m sure they will have me send in home spirometry (lung functions) once or twice while finishing out the prednisone taper.

    I think that covers all the things. I’m so ready to stand in MY shower with all that hot water blasting my very sore chest muscles for a very long time. Thank goodness we have a tankless water heater. Haha

    Until next time…

  • Update From Lock Up – Weekend Edition (Day 6 & 7)

    Day 6 (Saturday) – My early morning labs showed that my blood sugar had gone up more than it had been, up to 288. You don’t have to be diabetic for steroids to mess with your blood sugars. Higher doses of steroids just makes it that much more fun when it comes to the blood sugar dance. The nurse checked my blood sugar around 3pm and it was 168. A blood sugar around 150, give or take, especially with being on higher doses of steroids is pretty good. I’ll take it! Haha

    Next order of business from day 6 was my potassium level on my morning labs was on the lower side at 3.3 by a smidge (normal range being between 3.5 and 5.3). This won me 4 giant potassium horse pills along with a magnesium infusion. The magnesium infusion is done to help the potassium absorb better.

    I did 40mg of IV solumedrol steroid for my morning dose and my evening dose on Saturday. I tolerated the lowered dose well.

    Today, Day 7 (Sunday) – My potassium was back up into normal range on my morning labs. It was 4.1, with the normal range between 3.5-5.3. This means no more potassium and magnesium combo for me. My blood sugar was high again but lower than yesterday. This morning it was 238. My blood sugar should continue to come down as the steroids are lowered.

    We decided to only do a morning dose of 40mg IV solumedrol this morning and see how I tolerate the once a day dose. So far, so good. 🤞🏼🤞🏼

    Like I said before, this is a trial and error kind of thing as far as when to go down on the dose of steroids. We just have to go down on the dose and see how I do. One day at a time. No rush.

    Of course, everyone is asking if I’m feeling better. Yes, I’m definitely feeling better than I was when this whole thing started. Everyone is commenting on how much better I am looking as well. Win, win! Still no idea on when I’m going home. Of course, I’m hoping to go home mid week but I’m not holding my breath on anything. Not that I have any breath to hold anyway. Haha. I’ll update when I know more.

    Until next time…