When I know I'm headed for a tune-up, I start to think about what I need to do to make the most of my time in the hospital, and, let's be honest, to get out as quickly as possible! “Efficient” can be defined as “preventing the wasteful use of a particular resource.” Typically, when I am in the hospital, the goals are to eradicate (or suppress) infection and improve lung function, gain weight, and leave with a game plan to remain healthy for as long as possible. An inpatient stay is not on my top 10 list of things I want to do, but if I have to go, there are some things I have on my wish list that will help me use this resource (hospital) as efficiently as possible. I also realize that not every hospital, care center, or care team will have the resources to provide everything on my list, but it never hurts to dream. So here are 4 things that help to make my inpatient stay “ideal:”
- Seeing someone from my CF care team every day. These are the folks who know me best and know exactly where I stand health-wise. Seeing at least one person from my team each day lifts my spirits, makes me feel cared about, and, on a clinical level, it ensures that my time in the hospital is well spent. My care team can advocate for me and talk about my progress and changes that may need to be made to my treatment plan. They also should be able to help me resolve any questions or concerns I may have while in the hospital.
- Available exercise facility or equipment. Since I need to be constantly moving mucus up and out of my lungs, I need to stay active even when hospitalized. A crucial part of encouraging me to get active is to have facilities available. It may not be possible for every hospital to have an exercise room for people with CF. In that case, exercise equipment, like a treadmill or stationary bike, should be offered; or, ideally, I would have the option of getting out of the room to take a walk (fresh air!).
- FOOD. Like many others with CF, gaining weight is usually on the top of my to-do list. Hospital food can be less than ideal, so having options helps! My care center offers food vouchers to people with CF to use during our stay. The vouchers can be used in the snack store or in the cafeteria -- which has many more options than room service. I think this is a great idea because it encourages me to get out of my room (gowned, masked, and gloved, of course!) and go down to the cafeteria for some food that is more appetizing than what I can order to my room. Also, having a friend or family member bring me food from the “outside” really makes my day!
- Making sure there is a comfy recliner or couch, as well as pillows and blankets, in the room is a must. Since an inpatient stay for someone with CF can last for weeks, a friend or family member is likely staying overnight. Having a loved one keep me company in the hospital really helps the time pass more quickly and makes my days brighter. Their presence is a big part of me getting better, so making sure that they are comfortable is important to me!
While the onus is ultimately on me to make the most of my time in the hospital, I think there is a lot that can help me improve my health. I have found these examples to be important during a stay, but I know that each person's wish list will vary, since each person with CF is unique and has their own set of needs. Talking about these needs with your care team, as well as your loved ones, is important to make sure that the time you spend in the hospital is effective.