When you need home care, your body is usually fighting an exacerbation (where your lungs are worse than usual). Therefore, your CF care demands more time and attention to get better. Balancing your home care needs with increased nutrition, fluid intake, airway clearance and sleep requirements is a challenge for everyone with CF.
- Having an exacerbation that takes extra energy is like drawing money out of your nutritional bank account. Make sure you get good nutrition while doing IVs. Try preparing large amounts of food and having leftovers, or ask your medical team for some extra nutritional supplements. Home care is a great excuse to treat yourself — to get take-out or have food delivered, order groceries online, ask friends to bring you food or buy frozen meals that are easy to make.
- Take the time during an infusion of IV medication to do airway clearance. As long as you’re stuck getting an IV, you might as well use that time to inhale your medications and do chest percussion. Try to multitask more. Maybe you can use your Flutter® or Acapella® device while doing email, cooking or when you are a passenger in the car (never drive while doing treatments). Airway clearance is more important than ever when you are on IVs. Just think of all the bugs that are being killed — you want to get the dead stuff out!
- Even if you aren’t feeling up to it, exercise is very important when you are having an exacerbation and need home IVs. Make time to maintain your exercise routine, with permission to reduce intensity or duration, when you are on home IVs. If you sweat a lot, ask your home care agency for extra supplies for frequent dressing changes.
Ask your CF team if you need to adjust your activities while on home care. For example, playing football might be a bit risky if you have an implanted port accessed! You may also want to plan your exercise around your dressing changes. You can schedule a swim in between your doses when your implanted port is de-accessed. Even when you’re using home oxygen, exercising with oxygen can help improve your baseline.
- Do home care for the right reason. If you’re doing home IV infusions so you can continue going to school or work, make sure you’re getting a break somehow, with extra sleep or airway clearance. During IVs, your full-time job should be your health — and you may have to humbly admit that you can’t do it all. Perhaps you can ask your co-workers to donate vacation days/paid time off or ask your professors to give you an extension on assignments.
- If you must work when on home care, is it possible to work from home? Maybe you can work part time or flexible hours during the course of your treatment.
- Sleep is still the best medicine, and when you are having an exacerbation, you’ll likely need more sleep. Try to go to bed earlier.
- If your IV is due at 11 p.m., set your alarm for 11 p.m. and go to bed at 9 p.m. Then when the alarm rings, wake up, connect your IV, set the alarm again and go back to sleep until the infusion is finished. Then you can flush and return to sleep. Let yourself sleep in or take naps to make up for lost sleep.
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