CF Happens

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

recent posts

  • 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…

  • Update From Lock Up – Day 5

    As always, mornings are the worst time to ask me how I’m feeling in general. It takes a good hour or two after waking up to get to feeling more human. I need to get upright so my lungs can get oriented. I then need to do all my breathing treatments, do all the coughing to get things moving and settled. With all that said, when you’re in the hospital, the doctors typically do their rounds early in the morning and wake you up asking how you’re feeling today. Good question doc, I can’t tell you yet. I’ll get back to you. Haha

    Here we are on day 5 of higher dose IV solumedrol (steroids). I will get another 60mg dose tonight. We will then go down to 40mg solumedrol tomorrow morning. If I feel like it wasn’t enough to keep things going in the right direction, we will do an extra 20mg dose making it the 60mg total again for the morning dose then stick with the 60mg tomorrow night. We will try again the next day to go down to the 40mg. I am going to let this take as long as it needs to so that I don’t go backwards and end right back here again. As much as I do not like being in the hospital, I know this is where I need to be to get better right now. I’m here until I can get down to an oral dose of prednisone regardless.

    I’ve had people compare this stay to an average CF exacerbation (CF flare up) stay where I would be in for IV antibiotics only. This is a very different type of stay than just dealing with the CF side of things. Honestly, CF is the very last thing on the priority list right now, so to speak.

    As you know, I do all my IV antibiotics at home for my normal “CF flare ups.” Me going into the hospital is not an ideal thing in general. When I go inpatient it just opens me up to every single germ that lives in the hospital that all the regular sick people have that I DO NOT need. I have enough going on to worry about adding anything extra. Some CFers prefer to go inpatient to do IVs and extra treatments. I’m not one of them. I’m very diligent in how I take care of myself. I don’t play around when it comes to my health. I’m already living on borrowed time. Why would I jeopardize the extra time I’ve been given by not doing everything I need to do to stay alive as long as possible. Haha

    So to answer generalized curiosity about how this stay is different, I’ll just say…the focus of this stay is mainly getting my very bad asthma lungs under control. The parainfluenza is what really set off the bad asthma symptoms/asthma attack. The parainfluenza is a tough one to get under control and healed from for a normal healthy person that has it. When you add in CF and bad asthma it just makes things that much harder to handle.

    Like I said before, I’m here for the long haul which is most likely a week to begin with. Yes, I will feel better than I am right now. It’s just going to take a while to get there.

    Unfortunately, life with CF is very unpredictable. When you add in the extras I have going on with pretty bad asthma, bronchiectasis and regular lung damage from having CF (the disease process) in general, it makes it that much more interesting. Haha. This is my normal everyday and I’m used to living it. I’m not saying I am a fan of it by any means but I do what I need to do to keep on living life. I’m nowhere near ready for the finish line of life. I have so many more memories to make!

    Until next time…