A hospitalization -- cystic fibrosis exacerbation, “CF lockup,” “tune-up,” “CF spa” or whatever you like to call it -- is not something that anyone looks forward to. But unfortunately, as a person living with CF, it is sometimes a necessity in order to get back to living life.
Through the years, I have learned that it pays to think ahead prior to experiencing a pulmonary exacerbation. Whether you're gearing up for your first-ever hospitalization or just need a refresher on how to have a productive stay, these five steps will help you get the most out of your time in the hospital.
1. Plan ahead: talk with your CF care team
Hospitalizations can be exhausting. Instead of trying to start from scratch on a respiratory therapy (RT) plan at the beginning of your stay, plan ahead and talk with your doctor in clinic about your inpatient RT preferences. Get a plan in place so that your CF care team knows what you want for yourself and it's already decided by the time you're admitted!
2. Set expectations upon admission
Upon your first day in inpatient care, request a copy of the intravenous (IV) medications you will be on, as well as a schedule of when they will be administered. Be your own advocate and don't be afraid to speak up if a treatment is late -- having the schedule on hand will enable you to know what you should be receiving and when.
Also, communicate to the RT team the treatment preferences you and your doctor decided in step one. Will you use the Vest or percussor? Which lobes would you like them to focus on? How many times per day, at what time and how long would you like each treatment to last? Ask them to communicate this with the rest of the respiratory therapy team on your behalf. This eliminates any opportunities to skimp on treatments. It's much harder to ask for a full treatment when you're tired. Naturally, you'll want to give yourself a break. Don't! You're in the hospital to get better.
3. Take advantage of the “free food” and “room service”
I can already sense the eye-rolling from other CFers on this one. But seriously, it may be hospital food, but not everyone gets food brought to them in bed every day, for each meal, for two weeks straight. And studies have shown that improved lung function is directly related to a healthy BMI. You're in the hospital to improve your lung function, so take full advantage of the free food. Additionally, some hospitals offer meal tickets that you can use in their cafeteria. This helps if you are totally burned out on the room service food. Ask your dietitian about this and heck, if you want to spend your meal tickets on 10 Snickers bars, who's to stop you?
4. Get out of your room (and move your legs)
I consider this one of the most important things you should do while stuck in the hospital. Getting out of your room at least once a day will greatly improve your mental health. We all know that it can get depressing staying in a hospital room for days on end, especially if you're there frequently, so go sit in a sunny lobby, on a bench outside or just take a walk in the hospital. Many hospitals have super old, weird corridors there specifically for your bored curiosity. At least that's what I've been telling myself. Nonetheless, grab a friend and go exploring.
If you're feeling up for it, get in some physical activity. If you can go running on the treadmill or around campus, great! But even just a short walk each day is so helpful in getting you back to your normal activity level. That way, once you're discharged you won't have to completely rebuild your stamina (and it will contribute to keeping you healthier, longer).
5. Surround yourself with people who will help you get better
You are in the hospital to get better. Therefore, you should surround yourself with people who are encouraging, willing to help where they can and generally just pleasant and supportive. And hey, if you can get a meal out of them from the outside, that's an added bonus!
Hospital stays are hardly a party. But since they're a part of life with CF, let's get the most out of them and help ourselves make them fewer and farther between.