Going to college when you have Cystic FibrosisPosted on June 29, 2017

Going to college when you have Cystic Fibrosis

Written by Stacy Motenko, a CF adult.

Going from high school to college can be a scary transition for anyone, but having cystic fibrosis makes things even more complicated.  It is important that people with cystic fibrosis feel confident and prepared to go away to school and to take care of themselves. I went to college at UC Santa Barbara and it was the best four years of my life, but it came with its own set of challenges. Looking back on it, there are certain things that I wish I had known before entering college. Here are some of my tips for this time of transition:

  • Paying for school. There are scholarships available to individuals with cystic fibrosis.  If you are in need of a scholarship, make sure to research your options in advance so that you have enough time to apply. Cystic fibrosis specific scholarships can be found here: http://www.cflifecare.com/resources/scholarships
  • Accept help. Get in touch with the Disability office at your University to see what accommodations they can provide you.  For example, they may be able to help you get a single room in the dorms and/or a note-taker for your classes in case you miss any.  They also can protect you if you ever run into a problem with a professor not being understanding about your health.
  • Your temple aka living space. I highly recommend having your own room and bathroom if possible.  Even if you live in a suite, it is nice to have your own room.  Having your own space allows you to be able to take your treatments at the times that are most convenient to you, get the sleep that you need and sterilize your equipment without risk of it being tampered with. It is also important to keep your living space clean in order to minimize dust and bacteria.
  • Full disclosure. I strongly advise students to let their professors know about cystic fibrosis at the beginning of each semester so that they are aware of the potential issues that could come up such as missing class or needing more time to complete assignments due to illness or hospitalization.  I have found that when you wait until there is a problem to tell your professor, they are less likely to be accommodating. 
  • Get to know the locals. Find a cystic fibrosis Care Center near your school so that you have somewhere to go for routine care or in case of emergency.
  • Getting your medications. I recommend using a specialty pharmacy that will deliver your medications to your doorstep.  That way, you can get your meds directly at school and you don’t have to rely on going to a local pharmacy to pick up your meds.
  • Transportation. If you are in a location where there isn’t public transportation and you are allowed to bring a car to school, I recommend doing so.  This allows you the flexibility and freedom to go to the doctor or run errands whenever necessary and also to drive to class if you are sick and can’t do the walk.
  • Pace yourself. You know your body best. You may want to take the minimum number of units so that you don’t stress yourself out and you allow yourself the time to take care of your health.
  • Create a schedule that works for you. As a college student, you choose your own class schedule, so make sure to allow yourself plenty of time to get enough sleep and to do your full treatment routine in the morning and evening.
  • Make your health a priority. Going off to college is an exciting time and there are many new people and activities to choose from. Make sure to always keep your health as a top priority and make the time to do your treatments and stay on top of your care.  
  • Snack time! If you are living in the dorms and eating your meals at a dining hall, make sure to keep snacks in your room so that you always have those extra calories when you need them.  Don’t be afraid of the freshman fifteen, those of us with CF don’t have to worry about that.
  • Exercise the mind and body. Some people go from playing sports and being highly active in high school to college where they aren’t getting as much exercise.  Find a way to incorporate exercise into your life at school, whether that means going to the school fitness center or joining an intermural sport or even just biking or jogging to class.
  • The trek to class. Some college campuses are very large and it is a journey to get to class. If you are sick and unable to walk to class, see if there are other options to get you there like driving your car, riding a bike or taking a shuttle.
  • Cleaning nebulizers. Depending on your living situation and kitchen access, you should find a cleaning and sterilization method that works for you to clean your nebulizers.  If you do not have the ability to boil your pieces or use a microwave sterilization technique, you may want to use a baby bottle sterilizer that plugs into an outlet. One that I recommend that cleans AND dries your pieces is the Wabi Baby Electric Steam Sterilizer and Dryer Plus.
  • Embrace your inner germ-o-phobe. Per usual, try and stay away from sick people and take precautions to avoid germs.  Wash your hands and use hand sanitizer as much as possible.  Staying germ-free is another great reason to have your own bathroom. 
  • Share the experience. If you are comfortable with people keeping you company during your treatments, I recommend having something fun to do in your room to keep people entertained during treatment time. For me, I had a dish chair and TV set up in my room so that my friends and I could watch movies or TV shows while I took my treatments.
  • Make smart decisions. There will always be a lot of temptation in college, and it is important to have fun and experience new things, but it is equally important to make smart choices that are best for your health and life.

If you have questions or want more information about going away to school with cystic fibrosis, please feel free to reach out to me at stacy.motenko@modernhealthinc.com

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