Are You a Teen with CHD Heading off to College? 10 Tips from CHDers Who’ve Done It
For many, going off to college is the first major step toward independence. It could mean leaving home for the first time, living in a new city where you don’t know anyone, or starting a whole new life. Add a chronic illness into the mix, like CHD, and it can get tricky. Check out these 10 tips on how to set yourself up to thrive in college.
Most of us want to have a “normal” college experience – live in the dorms, make lifelong friends, maybe get something pierced… But it may take a little more thinking ahead for us with CHD, than it does for our heart-healthy peers.
That can ABSOLUTELY be frustrating. You may feel like saying, “Who cares! I don’t want to think about my CHD. I just want to have fun in college and be like my friends.” It is a tempting thought to leave it all behind and be totally carefree. And while planning ahead sounds like a drag, it can make your transition to college life easier and healthier in the long run. After all, college is also about preparing you for the future, and that includes CHD!
Conquering CHD recently polled young adults with CHD, those currently in college and those who’ve been there, and came up with 10 tips for a successful college experience!
1. Have the CHD conversation with the necessary new people on campus, for example: Your roommate or the Resident Advisor
You may take the facts and details of your CHD for granted, but you will be meeting a whole world of new people who may have never heard of it, and they won’t know how it may impact your daily life. Talking about it with your roommate, your resident advisor (RA), or the friends you spend the most time with can not only come in handy in an emergency situation, but can also help you feel closer to the new people in your life. You don’t have to tell everyone, if that’s not your style, but a few trusted people in your inner circle can make college feel more like home.
2. Know your CHD like the back of your hand, and be able to explain it and your medication
If you go away to school, chances are you will need to visit a doctor at some point, not necessarily a cardiologist, but maybe a general practitioner for a common illness. It’s important to be able to explain to new doctors what condition you have and what medications you’re taking so they know how to best treat you.
You may also find yourself in new situations, like being offered drugs or alcohol. You need to be aware of the effects they may have on your body or medication, should you decide to participate. Or you may want to go for that body piercing. It’s important to know, based on your CHD, if there are specific precautions you should take in order to do that safely – like taking a pre-medication.
If you are unsure of how to describe your CHD or don’t know the names of the medications you take and why, be sure to ask your cardiologist or parents before you head off to school. Write it down or know how to access it on your phone.
3. Update the pharmacy where your prescriptions are filled so you can get them near school
If you take prescription medication, you will need to have access to it when you’re away at school.
Before heading off to campus, let your doctor know where to send your prescriptions, either at your appointment, by calling the office, or by updating the preferred pharmacy in your mychart/online portal account.
Be sure to pick a pharmacy near school that is easy to get to. If you won’t have a car, make sure it’s just a walkable distance away or by a subway or bus stop. This way you won’t have to worry about the logistics of getting your meds from home.
4. Enjoy it, the time will go by quickly.
It may sound cliche, but it does so for a reason: it’s true, time flies when you’re having fun! College lasts for such a short time, and it’s often the last time you will simultaneously feel free from the trappings of adulthood but adult enough to make your own decisions. Don’t take it for granted. Cherish the friends and the memories you make now.
5. Understand your health insurance.
When you live away from your parents or guardians, you’ll likely be responsible for making various doctors’ appointments. You may even have to cover some of the costs of visits or prescriptions. Learn how to access the details of your medical coverage, so you can find doctors and pharmacies that are in network and understand what out of pocket expenses you may be responsible for.
6. Find a doctor near campus
You might have learned what doctors near school are covered by your insurance, but have you figured out which is the right one for you?
As an adult with CHD, you’re going to need a doctor with experience with both adults and CHD. A regular cardiologist or pediatric specialist may not be appropriate. Ask your current doctor for a recommendation, contact the centers by campus, and reach out to organizations like ours or trusted online groups to learn more about the doctors available to you. It’s a good idea to connect with the doctor you choose in advance, so there is someone familiar with you and your condition from the start!
7. Get to know your school’s clinic staff
Most colleges and universities will have a clinic on campus. It’s helpful to introduce yourself, learn about the resources available, and whether they would be able to help you in a pinch.
8. Have medical authorization forms completed to make sure the appropriate people have access to your medical records
Once you turn 18, your parents or guardians may no longer automatically have access to your medical information. Contact your doctor’s office about completing the necessary paperwork to ensure your emergency contact has access to you and your records, should you need to act on your behalf.
9. Consider the location and size of campus.
Maybe living at home is more suitable, living at school is not for everyone. It may not be affordable or practical, based on the school you choose or perhaps even your CHD. And that’s ok! You can still join clubs, spend time on the quad or in the library, and take advantage of the programs geared toward commuters.
Similarly, BIG schools are not for everyone. Some flourish on large campuses with a wide array of majors and extracurricular activities, while others prefer smaller, tight-knit communities. It’s important to consider what works best FOR YOU.
Does the school offer your major of interest, is housing/parking easily accessible, can you physically make it from the dorms to class and back again, is the school just too far from an appropriate care provider? Taking all of these factors (and more) into consideration when picking a school and deciding whether or not to live on campus is vital to making the most of your opportunity.
Remember, different college experiences work for different people:
“I found that a small campus size was very beneficial to me as a heart patient. If you need regular blood work, check to see if the on campus clinic can complete this- mine was able to for most of my college career. Make sure you have a medical alert notice (jewelry, card, etc) on you at all times. I had minimal heart complications in college, but when I needed oral surgery, which required me to be inpatient in the hospital due to my heart, I made sure my profs all knew far ahead of time and got the accommodations necessary. Lastly, if you feel comfortable, educate your friends and others on your campus about congenital heart defects- it’s always good to spread awareness!” – Allie Gasiorowski
“I went to one of the largest state schools in the country and loved it! I was in close contact with disability resources. Since the health center on campus was notoriously known as the “quack shack” I found a PCP off campus in town. I traveled to cardiology appointments a few times a year. I didn’t really let anyone know of my CHD unless they needed to know or I wanted to share. Instead I wore a medical alert bracelet. I was also in heart failure for the last 2-3 years of college.” – Lorrie Hill
10. Take your meds every day
Really. Take your meds. If they make you feel weird or sick, talk to your doctor right away. If you have trouble remembering to take them, set an alarm on your phone or use an app to remind you. (See some we’ve found HERE)
Other Words of Wisdom…
“I would just say to make sure you continue to take care of yourself in college even when you are busy. Take your meds, go to your appointments, eat well, get enough sleep, exercise appropriately, etc. Also, if you need academic or any other accommodations, it is great to get in contact with your college’s department for students with disabilities ASAP. Lastly, if you are comfortable, it can be good to tell your profs that you have CHD, so that they know you might have to miss class sometimes. You’ve got this!” – Lily Manderfield
“Make sure your college health center knows about your CHD. Make sure your RA knows, in case of emergency. Listen to your body, don’t try and keep up with everyone else if you can’t. Don’t stop taking your medications. It could possibly land you in the hospital Don’t be afraid to use the disability services office- they can help you, even if you don’t think they can. Have fun. Be yourself. Don’t limit yourself to staying close to home just because of your CHD. I cannot stress this enough. So much growth happens, even if you’re an hour from home.” – Gwenyth Murphy