CF Happens

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

recent posts

  • Well Well…Time for IVs Yet Again

    It’s been 27 days since I finished the round of IVs that were prescribed to hopefully keep my lungs in line during and after my back surgery. I did home spirometry on February 4th (3 weeks after surgery) and my FEV1 was 27%. My lung function was down as was to be expected after being under anesthesia, being limited on how hard I could cough for a few weeks and being limited on mobility. I was not surprised it was down to 27% from my normal baseline of 32%. When you’re basically only working with 30% of your lung capacity, a 5% decrease is significant enough to really notice the difference.

    I was pressing on as usual, as I always do. In general, I’m not one to complain about my physical struggles because complaining doesn’t make them go away. Complaining about them just makes me think about them even more and gets me even more mad that I can’t magically make them disappear. I was getting out of breath much quicker and easier than normal, as was expected but worse than it really should have been. Fast forward to Friday morning…I woke up feeling like death and I looked like it, my husband can attest to that. haha He said, “you don’t look like you want to be awake.” You got that right.

    I spent most of the day in bed. I was feverish with chills but not running a fever, I had body aches and I was coughing like crazy and actually coughing stuff up which I haven’t done in a really long time (thanks to Trikafta). I did an at home Covid/Flu A/Flu B test and all were negative like I thought they would be. Just about everyone that I shared that I wasn’t feeling well with asked if I’ve been around anyone that’s sick, which is a common question whenever I get sick. To answer that question, no I’ve not been in direct contact with anyone that is sick. Obviously I’ve been in public so who knows what I’ve been exposed to in public. I went ahead and sent a message to my doctor Friday evening letting him know how I was feeling. I told him I was negative for Covid/Flu A/Flu B and that it may be time for IVs again. Also that I had the upcoming port flush appointment already scheduled so it would make it easier to get everything going.

    I already have a port flush appointment scheduled for tomorrow morning (Tuesday) and it would be a lot easier to have them add labs to the port flush and I can just stay accessed if I’m going to start IVs. There was a method to my madness of sending the message on Friday knowing I had the port flush scheduled for Tuesday. Work smarter, not harder people. haha. I don’t feel as bad as I did on Friday thankfully but I’m still not great. Not coughing as much up and not as achy.

    My nurse called this morning and I’m the winner of 14 days of IV Cefepime (2g IV push-every 8 hours). He added the usual labs (CMP, CBC with diff, ESR and CRP) to my port flush order for tomorrow. I’ll get those same labs drawn once a week while on IVs, as usual. He wanted me to send in a home spirometry to see where I’m at as well. My FEV1 was .85L/31%, so it’s actually slightly better than it was on February 4th, I’ll take it.

    The joys of life with CF. It’s always interesting with the ups and downs to say the least. I never know what the morning will give until I wake up and get upright. Sometimes I wake up and I say, “nope, don’t want to do that today.” I just want to lay back down and get back up when I “feel better.” If only I could actually lay there and not cough the whole time to be reminded that I feel like crap, that would be fantastic. When I say “feel better,” I mean better than the extra crappy feeling and just my normal crap. haha. There are things that are just a part of me and my normal every day life, that I kind of “forget” exist because it’s just the way things are and I’m used to it. Well, here’s to feeling better than I am at the current time. It’s just part of it. I will make it through like always. It’s just another bump in the road, the road of CF. Just keep swimming…

    Until next time…

  • 4 Weeks Post Back Surgery

    My back is healing well. My incision is all healed. Of course, my back is tight and stiff as is to be expected after being cut open, dissected and glued back together. Also with being very limited on movement for the last 4 weeks. I still can’t bend at the waist, lift anything over a gallon of milk and I can’t twist. With being limited with those things, you get creative so you can get things done. It’s not like I have to be as stiff as a board but I can’t over extended my movements.

    I miss cleaning and doing the laundry. I am one of those weird people that actually enjoys cleaning and organizing. So yes, I’m serious when I say I miss cleaning! I’ve gotten creative in how I can do some things just so I can do a little something to “chip in.” Yes, my husband tells me not to do things but I can’t help it. I don’t like not doing anything. Doing little things here and there helps my mental health honestly. I am doing things in a new creative way that is within my restrictions. It is going to take time to build up my strength as it is, so I do a little and sit for a long time to recoup. Rinse and repeat. haha

    Today’s accomplishment is that I walked on the dreadmill (that’s the treadmill for you normal people) for 15 minutes (very slowly) today. I absolutely HATE walking on the dreadmill! I freaking HATE that I have to do something that makes me out of breath to get stronger so that I don’t get out of breath as easy. It’s very counterproductive if you ask me. I’m not a fan of being out of breath because it can very scary when you feel like you can’t enough air in to actually breathe. When I get out of breath I put my hands on my hips, close my eyes, do what I call “the baby sway” (sway like you do when you hold a baby), try to center myself and not freak the F! It’s no fun at all. I’m not a fan. 10/10 do not recommend. If you’re wondering, yes, I’m allowed to walk on the dreadmill during my recovery from back surgery. The best thing I can do is walk in spurts to keep me active and keep the blood flowing. Boy oh boy, do I wish the surgeon said NO walking on the dreadmill allowed. haha

    My lungs took a hit because of surgery and not being active and limited. I did lung functions on my home spirometer a week ago and they were not great as I expected. My FEV1 was 27% which is down 5%. That may not seem like much but when you’re only working with 30% of your total lung capacity, it’s pretty significant. My baseline (average normal) is around 32%. It’s going to take some work to get my lung functions back up. Not that my lungs were great before by any means but right now I would take my crappy lungs before surgery over this whole getting out of breath just from squatting down to get something. It’s dumb I tell ya.

    I’ve held off on doing the vest so far because obviously the thought of something squeezing and shaking my back doesn’t sound like a lot of fun. Now that my incision is healed I might try it and just not buckle the bottom of it and see how I tolerate it. I can always stop it. Honestly, my lungs could use good shaking to get things moving. If you’re wondering if my husband could “beat me” (as in clapping on my back and sides, beating is what we called clapping since I was a kid), he could but I just haven’t had him do it.

    I think that about sums up how things are going. I see my surgeon at the 6 week mark, which is February 24th. I’m ready for these restrictions to be lifted. Most importantly, I’ve been able to drive for 2 weeks so at least I have that freedom.

    Until next time…