Another Round of Home IVs: Having The Flu With Cystic Fibrosis
I noticed I had a fever on Friday. Low-grade fevers are normal for me, so I didn’t think too much of it. But later that weekend, I felt like tons of bricks had hit me and my fever spiked to 104. Ugh! How did I get sick?
I’m super careful about sickness, I use germ-x frequently in public and avoid touching doorknobs and buttons. I change clothes and shower after doctor appointments, and my husband and kid change after work and school too. We all wash our hands frequently, especially before preparing food or taking medications. My entire family gets the flu shot and everyone knows to avoid me even if they are sniffling. After a weekend of fevers and feeling terrible, I found out that - despite my best efforts - I had caught Influenza A.
Having the flu with cystic fibrosis
The flu can be scary for people with cystic fibrosis. I need to protect my lungs, since even simple colds can turn into pneumonia and permanently damage my lungs. My doctor decided Tamiflu and two weeks of IV antibiotics (Avycaz and Tobra) would be the best course of action. Alright… And here we go again…
Sometimes even despite my best effort, my lack of an immune system betrays me. I’m always ready though. I’m pretty used to doing IV meds. I usually get sick or end up on IVs 2-4 times a year, meaning I spend between four and eight weeks on IVs per year.
I’m thankful my doctor lets me do my IVs at home, instead of always being hospitalized. I prepare for home IVs in a very similar way that I prepare for hospital stays, which I talk about in two posts Part One: Growing up in the Hospital and Part Two: How I Prepare for the Hospital.
Preparing for my IVs
I always make sure the house chores and errands are done and babysitters or other helpers are scheduled on days I need it. I buy quick meals for my lunches (since I have little energy, but need to keep my weight up). The hard part is balancing everything between work, home, kids, errands, IVs, etc.
My daily schedule on IVs looks similar to this:
- 6:30 am: Wake up
- 7:00-8:00: Get kid(s) ready for school while hooked up to Avycaz IV med (gravity with IV pole)
- 8:20-10:30: Eat breakfast, pills, 4 nebulizers, and wash med cups, work on laptop while doing meds
- 10:30-11:30: Clean/errands
- 11:30-1:00 pm: Pick kid up, head home from school, have lunch
- 1:00-3:00pm: 2 afternoon nebulizers, play time with kiddo
- 3:00-4:30 pm: Avycaz IV med with IV pole
- 4:30-6:00pm: Cooking and eating dinner with family
- 7:00-8:00: Bedtime routine with kiddo and Tobra IV med
- 8:00-9:30: 3 night time nebulizers
- 9:30 pm: Sleep and set alarm for 11 pm
- 11:00 pm: Hook up to Avycaz and unhook at 12:30 am.
We have lots of weekly appointments that have to fit into our daily schedules. On Mondays and Tuesday's our kiddo has dance and gymnastics. He also has foster-related appointments on both Wednesdays and Thursday’s. Also, while on IVs I do outpatient blood work at the hospital and get the needle in my port changed on Wednesdays. So, while I’m on IVs my husband will rearrange his work so he can run our kiddo to all his appointments and classes. We are very fortunate that my husband’s work is flexible for him.
Having the flu with cystic fibrosis is a lot to manage
It’s hard to manage all the appointments while doing IVs, especially when I’m exhausted. This round of IVs has been extra tiring since my body is fighting influenza A. It’s hard to admit to myself when I need help or when I need to rest. I have to give up certain aspects, like deep cleaning the house or running to the store for groceries. I do as much as I can, but the most important aspect is my health and being a mommy to our kid(s).
I put priorities on my meds and kids first. Even if all I do in a day is meds, IVs, meals, and play with our kiddo, I still consider that a success. The cleaning, errands, and other stuff I can always catch up on after my IVs are done. Being on IVs at home helps me to see priorities in life and it makes even more thankful for all the time I have in between IVs. However, I’m always happy when my round of IVs is over and I can go back to my day-to-day life.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?