For students with pulmonary hypertension, college requires advance planning, no matter whether you’re heading to a four-year university or taking a few classes at a community college.  

The benefits are obvious: Higher education offers new experiences, a pathway to a career you’re interested in, and the opportunity to make new friends. Managing your pulmonary hypertension creates some challenges, a few PHA teen mentors shared their advice: 

Should I dorm at school? 

Dorming on campus is a big part of the college experience. However, college dorms are typically small. They may have little space for medical equipment and limited privacy if you need to prepare medications or change a site. Plus, dorms put you at risk for catching colds or other respiratory illnesses.  

Many colleges offer single-person dorm rooms. While single-person rooms might cost extra, some colleges waive the extra fee as a medical accommodation. 

On the topic of moving away from home, Emily says, “You don’t realize how much your parents are there for you until you leave them. Going to a school so your parents can be there in a reasonable amount of time is a good idea.”  

Emily, Carson and Wendy also recommend practicing independence before you go off to college – preparing and ordering your own medications, for instance.  

Who should I tell about my PH? 

Letting the right people know about your pulmonary hypertension can make things smoother for you, every day and in the event of an emergency. 

Disability services 

Most colleges have disability support services offices that manage student accommodations. This office can help you arrange special dietary needs at the dining hall, extra time for tests, note-taking assistance, pre-registration for courses, centrally located housing, ADA parking or transportation around campus. 

If possible, investigate these services during your college search. “Get the resources you need to succeed in school,” Sean says.  

Some colleges also have their own EMTs who respond first in medical emergencies. Let the college emergency services team know about your condition and what medications you take. 

Resident assistants

If you plan to live in a dorm, inform your resident assistant about PH. Your RA may be the first person involved if an emergency happens. 

Professors 

Tell your professors and teaching assistants about your PH. Explain that you might have  sudden absences, need special equipment in class, or have hospitalizations, late arrivals, etc. Let your professors know as soon as possible if you are going to miss class. Many will be understanding if you warn them ahead of time. 

Local hospital 

Before you move, scope out the local hospital and a PH doctor or clinic. “I moved about three hours from my home. It’s OK to move away but check out the hospitals in the area just in case something does go wrong,” Emily recommends. 

Friends 

Making new friends is a big part of college. That can feel challenging under any circumstances, especially if you’re not sure how to talk about your PH. 

“Going to a new place and a new city, it’s hard to make friends anyway and then having this extra obstacle of PH makes things a little bit harder,” Carson says. “If you’re willing to open up and let your friends in, and tell them your story, it makes them feel closer to you.”  

How are accommodations different in college from high school? 

Disability laws change between high school and college. “In high school, the school is required to seek you out and provide what you need.  

In college, you have to be proactive. If you want the school to provide accommodations, you have to inform them about your medical condition and needs. The school probably will need a letter from your doctor as proof that you have a disability. Check with your school’s disability support services to learn what paperwork you need. “Success is ultimately based on how well each person answers the prompts that the scholarship asks,” Sean says. “My advice: Start early, be organized, and get plenty of help.

Start early to meet scholarship deadlines. You need to know what you’re going to write about and time to polish up your essays.

Be organized: Know when the deadlines are and stay on top of them. Try and submit them early.

Finally, get plenty of help. Make sure your submissions reflect your potential, ability and character. Your friends and family can help with proof reading. Nothing says, “We’re going to give money to this person and not that person,” more than grammatical/mechanical errors.

Make the most of college

“Have fun. College is about making friends, networking and being able to experience everything that’s there,” Sean says. It’s good to socialize, but know your limits. Allot time for studying, time for family and time for yourself – if you’re not healthy, you’re not in school.”