CF Happens

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…