Experience and Advice
Here’s a helpful excerpt from Bloodline, a newsletter from the Cincinnati Children’s Hospital Medical Center (Volume 2, 2006 Edition 2), about going to college with a bleeding disorder, by Anne Chambers, RN, BSN, Thrombophilia Nurse Coordinator.
View the article: Planning Ahead — Supplies and Medication
Planning Ahead
- Supplies and Medication
- When packing to go to college, make a list of the supplies you will need to manage you bleeding disorder. This may include factor, syringes, Sharps containers, Stimate, joint braces, ice packs, and crutches.
- If you receive home therapy, check with your home care company about having medication and supplies delivered to college.
- If you have not ordered your medication and supplies before, talk with your parents and begin to learn this several months before starting college.
- If you do not self infuse, talk to your treatment center staff about learning this important skill. Start working on this skill several months before school starts.
What About Health Insurance?
- It is important to carefully review your health insurance policy. If you are going to a college out-of-state or a distance from your home, you may be “out-of network” which can affect what services are covered. Many insurance companies make exceptions for college students and it is important to know the details of your policies in advance.
Where to Go for Help
- Ask your treatment center staff what treatment center is located closest to your college. Your nurse coordinator can let the treatment center know that you will be attending college in the area so they will be familiar with you if you need to seek treatment.
- Let the student health center at your school know about your bleeding disorder and its treatment.
- Keep a list of phone numbers for your local treatment center, the student health center, and emergency services. Answers to your questions may only be a simple phone call away.
- Remember to wear your medical alert ID bracelet/necklace in case of an emergency.
- Keep your yellow medical information card with you at all times.
Living Away from Home
- Consider your bleeding disorder when requesting campus housing. A first floor room may be helpful if you have problems with stairs. Also, consider requesting a dorm close to the center of campus to avoid long walks to classes and other activities. This may be especially helpful if you have frequent bleeds or joint problems. Your nurse coordinator or physician may be able to provide a letter that will support your request.
- Check to see if your college provides refrigerators in the rooms. You may need a refrigerator to store your factor. Small refrigerators may also be available for rental or you may want to purchase one.
Talking to Your Roommate
Many students worry about how to talk to their roommates about a bleeding disorder. The best way can be a brief, factual explanation. Let your roommate know how you treat your bleeding disorder. Consider letting your roommate know where you keep your medical supplies and phone list in case of an emergency. Let your roommate know that your bleeding disorder has very few limitations: you can do just about everything he or she can do. Although you may not be able to play in the dorm football game, you can join in for pizza, a trip to the gym, or a study session at the library.
Top Tips from Students with Bleeding Disorders
“My bleeding disorder affects me at college because I have to be responsible for myself. Living on campus I typically don’t have to worry about my refrigerator losing power, but at times it does. Therefore I get nervous when we lose power. My best tip is to make sure you have an ice pack frozen and a cooler at all times. Needles and supplies are prohibited unless [the dorm administrators] know you have them. I would recommend that you keep it discrete and put your supplies in a box in the closet. Now that I can treat myself I just notify my treatment center back home about treating any bleeds. When I treat with factor I make sure that I have someone with me who knows about my disorder and who can assist me.”
Josh Williams
Capital University, Columbus, Ohio
Major: Nursing
Lives on campus and works as a resident assistant
Best job perks: partial coverage of room and board; private room
“As you start college it is important to begin thinking about insurance issues. You can easily find yourself in a sticky situation if you don’t keep an ear to your insurance. Also, make sure that all roommates are aware and have an intimate understanding of your condition, even if you are mild or moderate. Get in contact and register with the health services department at your school. If you have frequent bleeds you may consider registering with Disability Services who can help you with special needs, like parking, and will protect you if you end up missing a substantial amount of class. Finally, make sure that you have a multiple copies of your travel letter from your doctor. Keep papers like this in a readily accessible file.”
Justin Lindhorst
University of Cincinnati, Cincinnati, Ohio
Major: Organizational Communication
In the Spring 2007 edition of Veinline, the Newsletter of the Hemophilia Foundation of Minnesota and the Dakotas (HFMD), college student Jeff Bostwick offers some advice.
Parents worry. It’s a simple statement, but one that bears repeating: Parents worry. It doesn’t matter if the kid is two or 22, wherever something can go wrong, there’s a parent worrying about it. So when you take a teenager (already a great source of anxiety for the average family) and send them off on their own into the vast unknown we call “College”, there’s bound to be some excessive nail-biting. Add hemophilia into the mix, and there’s a serious potential for panic. Luckily, a lot of the anxiety can be soothed with a bit of planning. For the most part, hemophilia shouldn’t play much of a role in deciding which school to attend - that’s an entirely different conversation! Still, there are a couple things to consider:
- College tends to involve a lot more walking from class to class than high school. For students (like me) who tend to get knee or ankle bleeds, the size and layout of the campus can become a factor. Some of the schools I looked at had very nice, open campuses - but the daily walks from dorm to class and back would have put more strain on my ankles than I was willing to endure.
- Though the student health centers on campus are better than the average high school nurse’s office, it was important to me to have a well-qualified staff. If there’s a problem with an infusion, or I need extra assistance with anything, it’s good to know that I have easy-to contact, competent help right on campus.
- If you know that you spend a lot of time on crutches or in a wheelchair, make sure that you get a good feel for how handicap-accessible the campus is. From what I’ve heard, this isn’t usually a problem with larger universities, but smaller colleges often have older, less accessible buildings. Campus tours are always encouraged, but if you know you’ll have mobility problems they’re almost a must.
Once you’ve found your school, the work really begins. Since I’m going to an out-of-state school, the first thing I did was talk to my current hemophilia treatment center and get details for the closest HTC to the campus. They helped transfer paperwork to the new center, and sent them a “head’s up” that I would be moving into the area. Along with alerting the HTC, they put together a set of standing orders for the local emergency room. My next step was to call up the health specialist at my school and ask her about my factor shipments, infusions, and supplies storage. She talked to the people in the mail room for me, to let them know that they should refrigerate the boxes and call my dorm when they arrived.
As for the infusions, I was happy to learn that the school has no problem with me doing my shots in my dorm room, as long as I informed my roommate and the RA for the floor. In fact, with my RA’s permission, during the first few weeks of school I left my door open during infusions, so the other guys on my floor could stop by and ask questions. Other schools might have other policies, however, so be sure to check that out before school starts.
Still, all the paperwork and policies can only get you so far. In the end, there are still some adjustments that have to be made. The two biggest things I had to deal with were doing the whole infusion myself and remembering to keep on schedule with my treatment. The first one I dealt with in steps, so that by the time I left home, I could routinely do the entire infusion sequence unassisted. To me, it was important not to be tied down to the nurse’s schedule if I needed to do an infusion, so I wanted to be sure I could handle it myself. As for remembering to do the shots, the easiest way I’ve found is to mentally just tie the infusion to a set day (or days) in my class schedule. I find a couple of days where I’ll have a good chunk of time (so I don’t have to feel rushed), and then I just plan the infusions in like any other class.
No amount of planning can really take all the worry out of leaving for college, just like no amount of preparation can guarantee that you’ll never run into problems once you get there. Still, by thinking ahead and practicing your routine at home, while you can still get input and help if you need it, the whole experience can be made just a bit more tolerable, for both the teen and the parent. There’s just one last tip I have, and it’s one you’ll hear a lot, but it will really help: every so often, maybe just once every couple weeks, call your parents! A few minutes are all it takes to help set their minds (temporarily) at ease, and a phone call makes the perfect opportunity to ask for more spending money.
View the article: College and Hemophilia
Check out The Princeton Review for more tips on selecting a college.
