Important College Information
Making the “Most-is” of Cystic Fibrosis at UCSB
By Lucy Barnes
I remember my first day at the University of California Santa Barbara (UCSB). It marked the beginning of living and managing cystic fibrosis on my own, among many other things. The weather was sunny and bright, mirroring the dispositions of all the new students. I was among the incoming freshmen beginning to get acquainted with our new campus, and curious where the next four years would lead me. The bike path overflowed with seasoned riders zipping by and I made a pact with myself that by the end of this journey, I would ride with these bicycle warriors. Until then, I was content walking to class with the other wide-eyed freshmen. Looking around at my fellow classmates, I realized I was not alone in this monumental transition from high school to college. Instead, I felt a great comfort and solidarity with these strangers because we were all connected by one thing: the unknown. At that moment I knew everything was going to be okay.
I also knew that things were going to be okay health-wise, as my parents and I had met previously with the head of the disability services program, who told me about the ways UCSB would support my health needs. We had also previously met with the manager of student housing to request a single dorm room, as well as the director of the student health center, who became my primary doctor.
That first year of learning to balance caring for myself and having a full academic and social life defined the next five to come. To say I made a great group of friends is an understatement; I made a second family. It took a few months to find my core group, but after that we were inseparable. With these friends, I felt comfortable sharing the intimate details of my daily health routine, and CF in general. They each were so supportive and non-judgmental, and offered their help in many ways. They were sensitive about cleanliness, stayed away when they were sick, got flu shots, and at gatherings, protected me from second-hand smoke. And by the way, it helped having a boyfriend who was willing to sterilize my equipment! It was because of their support, that I realized CF was not something to hide or be embarrassed about, but instead just an extra part of my daily routine and ironically, theirs as well. My days consisted of classes, exercise, hanging out with friends and my various health needs.
I anticipated needing additional time to dedicate to my health regimen and my CF doctor recommended I only take 12 units per quarter (three classes), as she explained that my daily CF care should be thought of as “just another class.” I scheduled my classes around my two treatments and daily exercise so as not to over exhaust myself. In addition, I developed a close relationship with an amazing primary doctor at the student health center who was familiar with CF. She was always available to answer questions, do routine tests such as spirometry, throat cultures and bloodwork, prescribe various medications, as well as consult with my CF doctors at home. She was even willing to make house calls if needed. She also acted as an ally when I was sick by writing letters to my professors explaining my absences so I could have extra time to make up missed work. My doctor and my friends formed a circle of support and I feel lucky to have created these ties because they made my college experience significantly easier.
Five years have passed since I first started UCSB, and in two months I will be graduating and receiving my degree in Psychology. I have confronted the bike path and am now a proud bicycle crusader. I continue to have a family of friends whom I see regularly. And I am looking into graduate school for the future. It is surreal that college is coming to an end, yet I’m excited about what lies ahead. I now know that navigating the unknown is possible with supportive friends and family, and caring doctors. I also learned that I have the ability to direct my future, and that with an optimistic disposition, anything is possible. I do not regret a single moment or decision I made, and I am so proud of my dear friends and myself for accomplishing this chapter of our lives.
"First printed in CFRInews, Summer, 2012
Step by Step: Tips for Transition to College and Beyond
By Bridget Barnes
Going away to college is a big transition for many people. Going away to college when one has cystic fibrosis (CF) can complicate this transition, as the student must negotiate the delicate balance of becoming an independent adult, while still depending on various people, places and things to maintain his or her health. As the mother of a college student who is about to graduate, and who lives five hours away from home, here are some practical tips my daughter and I learned which made the transition to college easier.
After sending in the intention to register, or acceptance letter, for college:
Meet with the campus disability office to register and inquire about accommodations and/or services they offer (i.e. providing note takers and advocating to professors when classes are missed due to illness, etc.).
- Contact student housing to request a single dorm room. Ask about the frequency of housekeeping services and request increased attention if necessary, including vacuums with HEPA filters, as well as extra care of shared bathrooms.
- Sign up at the campus recreation center to use the exercise facilities (personal trainers are also available).
- Meet with the director of the student health center to find a primary care doctor, preferably one who knows about CF, and then schedule an initial meeting to make introductions.
- Meet the campus pharmacist, as there may be times when a medication must be ordered on short notice and the campus pharmacy is the most convenient location.
- If using a mail-order pharmacy, coordinate orders regarding the time of delivery and mailing address where medications are to be shipped, especially chilled medications that are sent overnight.
- Check on the college’s health insurance program and see how it interfaces with any existing coverage.
- At 18, the Health Insurance Portability and Accountability Act (HIPAA) affects parents’ ability to have access to their child’s medical records and participate in his or her medical decisions. Consider having your son or daughter sign release forms for each health care provider, pharmacy, and insurance carrier, etc. in advance. See: http://www.hhs.gov/ocr/privacy/hipaa/understanding/summary/index.html
- Ask your CF doctor from home to send standing orders for routine procedures such as sputum cultures, spirometry, blood work, etc. to the primary doctor at school in case a change in health requires an immediate diagnosis.
- Get a recommendation from specialty doctors at home (i.e. endocrinologist, gastroenterologist, etc.) for an equivalent care provider near the college campus.
- CF-related diabetes requires special attention: alert the dorm’s resident assistant and possibly a neighboring student, and provide them with necessary information in case of an emergency.
- Create a binder to take to college with copies of the following: 1) a complete list of medications including their dose and frequency; 2) insurance contact information and copies of health insurance cards; 3) names and contact information of all CF and CF-related doctors and nurse practitioners (this contact list makes it a lot easier for local doctors to fax or email test results).
- Space is tight in a dorm room, so consider assembling a “med cart” with drawers and trays for the storage of medications, nebulizers, and the sterilization equipment (try the “ELFA” storage system). A lamp on top and it doubles as a nightstand!
- Make sure the sterilization process for nebulizers, etc. will work easily in a dorm setting.
- Get a small refrigerator for medications that need to stay cold.
- Stock an ample supply of paper towels, hand sanitizer, “Clorox” wipes, Kleenex, etc.
When scheduling classes:
- Consider a reduced course load, as our doctor recommended. A person with CF needs to devote one or two “extra class periods” per day to respiratory treatments, cleaning equipment, exercise, etc. This way treatment times are built into the course load and will not run the risk of being sacrificed due to academic and social pressures.
- Schedule classes around treatment times, if possible.
Going to college is an important step towards becoming independent. Creating a supportive environment is crucial for every student, and developing relationships with key people on campus ahead of time helps to ensure a positive experience. For those with CF, a few extra steps to ease the transition to college can set up a successful model that lasts far beyond graduation.
"First printed in CFRInews, Summer, 2012