PREPARING FOR COLLEGE AND STAYING ON TRACK

Transcription

1 PREPARING FOR COLLEGE AND STAYING ON TRACK Going to college? Get the most out of your experience by focusing on what motivates you to take care of yourself. This guide is intended to help you by sharing how to prepare and some things to consider when you re there, according to someone who s been through it before: Bridget B., a CF mom, patient advocate, and parent mentor. In this guide, you ll find: Page 2 Page 3 Page 3 Page 4 Page 5 Page 6 Page 6 Before You Go Requesting Special Arrangements Once You re at School Getting Good Nutrition on Campus Checklist of Key Things to Do Before Going to College My Medications My Healthcare Contacts 1

2 Before you go Below are a few things to consider that can help you find a balance between managing your cystic fibrosis (CF) routine and enjoying your time at school. CONTACT THE DIRECTOR OF YOUR COLLEGE S STUDENT HEALTH CENTER The staff there can become an invaluable link between you and your doctors when you can t get back home for a clinic visit. You may even want to set up an appointment to meet them in person in the first few days of school. ORGANIZE HOW YOU LL GET YOUR MEDICATIONS If your medications are being filled by a specialty or mail-order pharmacy, learn what your campus rules are regarding delivery and pickup times. Also, make sure you have the exact mailing address where medications are to be shipped; sign up for delivery notifications if available. Then, make sure your specialty pharmacy can work within those guidelines. TALK TO YOUR DOCTOR Together, you can discuss creating standing orders for routine procedures you might need, such as sputum cultures, spirometry (FEV 1 ), blood work, and others. Your healthcare provider may also be able to help you find labs in your school s area that can perform these tests for you while you re at school. MAKE LISTS Be sure to have your complete list of medications (including dose and regimen), information about your insurance, and the names and contact information for all your CF-related healthcare providers. The last page of this guide can help you get started. You can also visit to download the free CFDaily app, which can help you keep track of your treatment, set reminders, and log medications. This page is adapted from content written by Bridget B.; excerpted from Cystic Fibrosis in the Classroom by Cystic Fibrosis Research, Inc. (CFRI), available at 2

3 Requesting special arrangements Before the school year begins, contact your school about options that may be available to you. Some people prefer the privacy of a single room at school. If you ll be living in a dorm and would like a single room, the social worker or staff at your CF center may be able to help with getting the proper paperwork. Other room options may be a room on a lower floor (to avoid stair climbing), or a room with a private bathroom and/or air conditioning Is there flexibility about the required number of class hours per semester and/or attendance rules? Are online or video classes available if you can t make it to class? Some colleges and universities even offer accommodations such as a designated notetaker for students who may need one If you get sick and miss classes, can coursework be completed and classes passed after they officially end? GET HELP WHEN NEEDED Colleges, universities, and other places of higher learning are required to make reasonable accommodations for people with disabilities. They also cannot discriminate against someone based on his or her disability or chronic medical condition, like CF. Many colleges and universities have an office for students with disabilities. The staff in that office should be able to help you get any special accommodations you need. It s best to contact the office as soon as you can, even before you get to school, when there may be more options available. Once you re at school Consider keeping a dedicated container or storage unit for your medications, nebulizers, and sterilization equipment It may seem obvious, but plan time for respiratory treatments, cleaning treatment equipment, and exercise, if recommended by your healthcare provider. It s easy to overschedule yourself, especially during your first year It may help to learn where the restrooms are on campus, and find the closest ones to your classes. As you know, a CF diet can sometimes lead to stomach pain, gas, and more frequent trips to the bathroom especially if you haven t taken enough enzymes If you don t have a car, try to determine in advance how to get to and from doctors offices and other appointments. You may need to use local mass transit, a taxi, or a ridesharing service, or you may need to ask a friend with a car, if you feel comfortable This page is adapted from content written by Bridget B.; excerpted from Cystic Fibrosis in the Classroom by Cystic Fibrosis Research, Inc. (CFRI), available at 3

4 Getting good nutrition on campus As you know, eating right can be challenging for anyone living with CF. It can be even more so while living on a college campus. It may help to go over your diet with your healthcare provider before you head to school so you are prepared to make healthy food choices on your own. Here are a few ideas to keep you on the right track: Try to eat a balanced diet that includes plenty of fruits and vegetables, whole grains, dairy products, protein, vitamins, and minerals. Remember, you need to eat more fat and more calories a day than your fellow students Try to avoid diet foods (for example, nonfat, low-fat, light/lite, etc); make sure your choices are calorie-rich and high in healthy fat Take advantage of your campus dining halls. They typically have a wide variety of high-calorie, high-fat options. Dining halls can be a great source of meals as well as midday snacks Stock your dorm room with high-calorie and high-fat snacks (for example, trail mix, nuts, packets of cheese or peanut butter crackers, carrots or celery with ranch dressing, etc) so you ll be less tempted to skip eating when you re too busy to go out for food If your dorm room doesn t already have a refrigerator, look into getting one. (Some campuses offer them to rent.) This will allow you to store your high-calorie, high-fat food products like milk, butter, cheese, and shakes in your room. It might also be necessary if you take medication that needs to be refrigerated This information was downloaded from Navigating Life With CF. To read more about managing CF at different life stages, visit 4

5 Checklist of key things to do before going to college Below is a checklist that recaps the information included throughout this guide. You can use it to help organize your transition to college. Set up a meeting with the director of the student health center. Find out where the nearest doctor s office, pharmacy, clinic, and hospital are located. Organize your copies of medication lists, insurance information, and emergency contact numbers. You can use the next page of this guide to start putting together your medical information. Research transportation options for getting to appointments. Buy or rent a refrigerator to store medications and food (if one isn t already available in your dorm). Arrange to have refills delivered to school. Be sure that your room has enough storage for treatment equipment, or bring something like a cart or drawers with you. Look into the exercise facilities that are available to you, if exercise is recommended by your healthcare provider. Check that you ve signed up for the best meal plan for you. Many colleges have a few different plans. Pack a supply of hand sanitizer, paper towels, tissues, and cleaning wipes. This information was downloaded from Navigating Life With CF. To read more about managing CF at different life stages, visit 5

6 My medications My healthcare contacts Name Phone Number This information was downloaded from Navigating Life With CF. To read more about managing CF at different life stages, visit Vertex and the Vertex triangle logo are registered trademarks of Vertex Pharmaceuticals Incorporated. Vertex GPS is a trademark of Vertex Pharmaceuticals Incorporated Vertex Pharmaceuticals Incorporated VXR-US e 01/2017 6