Day In The Life Of A CF Tune-Up
When living with cystic fibrosis, occasional worsening of CF symptoms is all too common. So common in fact, treating a flare of symptoms has a nickname in the cystic fibrosis community--a “tune-up”. A tune-up is when you and your doctor decide to use a course of stronger antibiotics through an IV for a couple of weeks to help treat the chronic infections that can cause increased cough, mucus production, weight loss, and fatigue.
What is a cystic fibrosis tune-up like?
A tune-up looks different for everyone with CF. Depending on your age and disease severity, a tune-up might be a scheduled two-week hospital stay when it’s most convenient or an unexpected seven week stint at home on home IV antibiotics--and anywhere in between.
Everyone experiences a CF tune-up differently. The medications used, infusion routes (i.e. peripheral IVs, port-a-caths, PICC lines), as well as the setting of your tune-up such as inpatient or at home can all vary. Deciding on all the tune-up factors is a matter of your personal treatment preferences and what’s best for your overall health.
Home IV schedule
Personally, I am a home-IV-antibiotics-kind-of-girl. Truthfully, it’s pretty hard to get me to agree to a hospital stay for a CF exacerbation unless absolutely necessary. (Although at the end of last year, I did in fact go into the hospital on a mommy vacation for IV antibiotics). I prefer doing home IVs because there are so many benefits to staying out of the hospital.
At home, I remain in charge of the treatment schedule, continue normal activity (if I feel up to it), and spend time with my family and raise my son. I love being IV pole-free with the help of the Homepump Eclipse balls that infuse medications with a pocket-sized ball. Plus, home IVs allowed me to continue school or working in different stages of my life. Ultimately, I feel I do better physically and mentally at home in the long run, but it’s a very personal choice for everyone.
However, home IVs are a lot of work! Unfortunately, it can be an overwhelming amount of work in the midst of feeling unwell and battling the side effects of the medications. You need help from loved ones in order to truly rest and heal with the draining IV and treatment schedule. Depending on the dosage and timing of antibiotics prescribed, your daily home IV schedule might look something like this:
- 6am: Flush port with saline and start antibiotic #1
- 7am: Flush with saline and hook up antibiotic #2
- 8am: Flush with saline and hook up antibiotic #3 then morning breathing treatments and Vest
- 8:30am: Unhook and flush port with saline and heparin
- 9am: Breakfast and morning pills
- 1pm: Homecare nurse visits to draw labs and do physical exam
- 1:30pm: Afternoon breathing treatments and Vest
- 2pm: Start antibiotic #1
- 3pm: Flush and hook up antibiotic #2
- 4pm: Flush and hook up antibiotic #3
- 4:30pm: Unhook and flush port
- 8pm: Night pills
- 9pm: Night breathing treatments and Vest
- 10pm: Flush and hook up antibiotic #1
- 11pm: Flush and hook up antibiotic #2
- 12:30am: Flush and start antibiotic #4
- 1am: Unhook and flush port
Typically when you are on IV antibiotics, you are followed closely with doctor appointments, tests, and blood work to ensure the medications are therapeutic and safe--sometimes weekly or multiple times a week. At follow-up appointments a PFT will be done to see if there’s been improvement in lung function. Your doctor will also look at your weight, physical exam, and your report of symptoms to decide how to move forward.
Sometimes after a significant improvement, you might decide as a team to discontinue IV antibiotics at home. If there hasn’t been an improvement, you may decide to switch or add additional medications. Follow-up appointments are vital during a CF tune-up to ensure you are on your way to feeling much better!
What does a cystic fibrosis tune-up look like for you? Do you prefer inpatient or home IVs? Share in the comments below!
Do your pets help with your cystic fibrosis?