Speaking of PH... With Teachers
High school is a big part of your life. But sometimes going to high school with pulmonary hypertension means that you miss classes or tests for doctor appointments, hospital stays, or just bad days. When you explain PH to your teachers, they will be better prepared to work with you to help you succeed.
Dani was diagnosed with PH in elementary school. "When I was in middle school, my guidance counselor would send my teachers an email explaining my PH and that I may not feel well and have to go to the nurse. I felt like many of my teachers never really read the email, and whenever something did happen that was PH-related they didn’t handle it very well."
When she reached high school, Dani's family arranged a face-to-face meeting with all of her teachers before the school year began. “I think the meeting and talking to my teachers really helped because learning about my PH wasn’t just one of their emails, but an actual person who talked to them about what they needed to know," shares Dani. "Throughout the year, whenever I needed to go to the nurse, my teachers would always ask if I needed someone to walk with me, even if it wasn’t PH-related. I was so happy that they remembered our talk and were taking extra precautions.”
Discussing PH With Your Teachers and School Nurse
Explain PH to school administration: Meet with your teachers, principal and nurse face-to-face early in the school year to explain what PH is, how it might impact the school year, and what you need to do if you’re experiencing PH symptoms in class. Use the School Resource Handbook to gather the information your teachers need to know about your PH, medications and emergency contacts. Be specific when you explain symptoms.
Know your school nurse: The school nurse is your ally. Make sure the nurse is up-to-date on your medications and don’t be afraid to go to the nurse’s office if you’re experiencing symptoms.
If You Have to Be Out of School for More Than a Day
Make a plan: If you don't have a 504 plan or an IEP, meet with your teachers early in the year to discuss how you’ll handle schoolwork if you have to miss school during the year. This might include having copies of your textbooks at home so you can keep up with the reading, using email to get copies of your homework, or having a classmate take notes for you. Make sure they understand that you will do as much as you are capable of.
Give yourself the chance to do your best work: If you’re not ready to take a test — because you’ve missed classes for appointments or fallen behind in your homework during illness — talk to your teacher to schedule a make-up test. Explain to your teacher that you need a few more days to prepare. Do this with respect and only make this request when you truly need to. If needed, get your parents involved or speak with your principal.
If you don't already have accomodations in place, a doctor's note can help if your gym teacher doesn't "get it." You can also ask your parents to help explain PH to your gym teacher.
"One of the toughest things to do was get out of gym class. In school so many kids try and get out of gym that my teachers looked at me like just another defiant teenager," remembers Nicole, who was diagnosed at age six. "Little did they know I would have given anything to run around and play. My mom and I went to the counselor, but she didn’t understand at first either. We had to get a special doctor’s note explaining PH."
Advice from PH Pediatricians…
Dr. Robyn Barst encourages kids with PH to do sports if they have an interest. She has treated a lot of kids who participate in competitive cheerleading, tennis, basketball and many other sports. Dr. Barst tells kids to “self-limit.” The only activities that Dr. Barst tells kids to avoid are contact sports (like football).
According to Dr. Dunbar Ivy, “It is hard to make a global recommendation [on playing sports] because it really depends on the patient. If the PH is mild to moderate, we recommend that the patient self-limit. We do not recommend competitive sports with severe PH. It is important to stress an individual approach, which is determined by the physician, patient and parents.”
Nicole's advice to teens with PH? "To all the other kids out there growing up with PH, try to be straight forward and confident when talking to your teachers! Stand up for yourself and don’t take no for an answer. You know your limits and don’t let anyone tell you any different. Most teachers are very understanding and supportive so if you do have to miss school because of your PH, make sure you keep in contact with your teachers. It shows them you care about your studies and would love to be sitting in class rather than at home or in the hospital because of PH."
This article has been adapted from articles by Nicole Turner and Danielle Epstein, first published in Pathlight Winter 2011 and Fall 2011.