CF Happens

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

recent posts

  • Day 2 in lock up

    I didn’t get much sleep last night per the usual with it being the first night and not getting here until shift change (7pm). Getting all the orders in and going takes awhile. Everything is staggered when things get started at random times throughout the night. I did get started on 60mg of solumedrol last night as well as both IV antibiotics, amikacin (every 12 hours) and zosyn (every 6 hours, infused over 4 hours each time).

    I had a chest CT this morning and I just asked my nurse if there was any report in the computer from radiology. It didn’t show any new pneumonia or much change from my CT when I was inpatient in December. It did show bronchiectasis, which one had for awhile. Bronciectasis is when the airways (bronchi) are thickened and damaged making it harder to move air easily. It also showed narrowing of the upper lobes which isn’t new either. The issue going on now is a lot of asthma with a side of CF. It’s aggravating the CF bugs in my lungs and all the other things as far as the scar tissue and irreversible lung damage that’s already there.

    They drew a Amikacin peak and trough, before and after a dose to check the level in my system to make there’s not too much. Since I’m on amikacin they did a hearing test because it’s in the same family as tobramycin which is an aminoglycoside which hearing loss is a side effect. My hearing test showed that I’m not hearing high pitched sounds that great but all the other levels are good. They will continue to monitor my hearing while I’m on amikacin. I also did lung functions. My FEV1 was 29%/.80L. They were 27% on my home spirometer. So I would call it steady with no loss. Different PFT machines show different values but as long as they are steady and consistent that’s what matters.

    They did start me on another inhaled medicine, revefenacin (once a day) which is used to control wheezing, shortness of breath, coughing, and chest tightness. It can be used in place of duoneb (atrovent/albuterol combo) which I take. I chose to do both the revefenacin and duoneb in hopes that I can put as much in my lungs to hopefully get me open. That’s basically the update for today.

    This is going to be a long boring weekend in lock up as usual. Nothing gets done on the weekend as far as any testing or new orders unless it’s necessary. I’m hoping to do lung functions again on Monday and fingers crossed there is some improvement and that I actually feel more open and not as short of breath. With that said, if there is improvement I’m hoping to be home Tuesday or Wednesday but of course I’m not holding my breath (literally and figuratively). I’ll update tomorrow if there’s anything to update about which means don’t freak out if I don’t post until Monday evening after lung functions and seeing the pulmonologist during rounds on Monday.

    Until next time…

  • In lock up I go

    I had a telehealth appointment with my CF doctor this afternoon because I’m not feeling any better on the oral Levaquin and prednisone taper. I did do home spirometry (lung functions) before my appointment so we knew where I stand as far as my numbers go. They are down to 27%. I made the decision to be admitted and get started on higher dose IV solumedrol (steroid) and IV antibiotics (possibly zosyn and amikacin). I had a few options to choose from as far as going inpatient or trying IV zosyn at home and continuing the prednisone taper. If I went the route of trying IVs at home and was no better come the beginning of the week I would end up going inpatient to do IV solumedrol and possibly change or add IV antibiotics. So I decided to get it over with now verses waiting another 5 or so days to most likely be admitted in the end.

    I just got to my room. It’s shift change so it will be a little bit before my real orders for solumedrol, breathing treatments and IV antibiotics are in the system and get started. They will access my port once antibiotic orders are in the system. I did a breathing treatment before I came knowing it’s a slow process getting things going in the hospital.

    It is very hard for me to throw in the towel and willingly be admitted. I’m not a fan of being in lock up. I’m very consistent in my treatments, IV times and taking my oral meds on time. I’m a little bit of a control freak (regimented) when it comes to my medical care and wanting things to be right. When I’m inpatient things get off with IV times because obviously I’m not the only patient they are taking care of. It’s hard for me to hand over that control. Being inpatient also takes a toll on my mental health, especially in the summer, my favorite season. I want to be outside in the sunshine doing things and not stuck in the bed. Heck, just being free to go eat lunch at a restaurant or window shop is a luxury that isn’t lost on me.

    Taking care of myself is my priority. With that said, my mental health is also a priority. I know what I need to do but that doesn’t mean there won’t be a little kicking and screaming involved. I’m stubborn in a lot of things but I ultimately do what I need to do to get better. I will update tomorrow with more details on what things get started and how my busy night is as usual. Little sleep will be had I’m sure.

    Until next time…