HLHS

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a research program with the goal of delaying or preventing heart failure for individuals with HLHS.

To learn more or to participate, please visit our website or contact HLHS@mayo.edu.

Follow the program on Facebook at Mayo Clinic HLHS, on Twitter @MayoClinicHLHS, and on Instagram at MayoClinicHLHS.

PUBLIC PAGE
Jan 21 11:06am

Tips on Preparing for College When You Have CHD

By Brianna N. Tranby, @briannatranby

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Going away to college can be both an exciting and scary time for young adults, including those with congenital heart disease (CHD). This article is designed to help incoming college students with CHD navigate this new chapter in life and learn how to take charge of their own healthcare.

 

After being accepted and choosing your college:

  1. Notify the Housing Office of special requests you might qualify for: Air-conditioned dorm, lower-level floor room or elevator building, or dorm near classroom buildings.
  2. Notify Housing/Admissions Office of need for available AEDs, if appropriate.
  3. Notify Disability Office of any special requests, such as needing additional time or a quiet location to complete testing.
  4. Contact the Student Health Office to discuss your health issues. You can schedule a meeting with them, if needed.

 

Six months before you go:

  1. See your cardiologist. Have all of your cardiac prescriptions refilled by your cardiologist and ask for written prescriptions to take with you if you need to refill medication away from home.
  2. Ask your cardiologist to recommend an Adult Congenital Cardiologist near your college. The Adult Congenital Heart Disease Clinic Directory is also a great resource.
  3. Create a file with information to keep with you when you leave home. You should be able to find most of this online in your electronic medical record, but ask your cardiologist if you have questions. Make sure the file includes:
    • Your heart defect
    • All of your surgeries and dates
    • All current medications and allergies
    • Copies of recent electrocardiogram and echocardiogram reports
    • Your primary care provider’s name and contact information
    • Your cardiologist’s name and contact information
    • The address, logins, and passwords for all online medical record accounts (keep in a safe place)
  4. See your primary care provider. Make sure all appropriate immunizations are up to date including: Meningococcal, Human Papillomavirus (HPV), and any booster immunizations. Make sure to get flu shot in early Fall (every year!) whether at home or at school.
  5. When visiting your college, scope out the nearest Emergency Room and pharmacy that are covered by your insurance.
  6. Order a MedicAlert ID. Wearing a medical ID band could be lifesaving if you have an emergency and can’t communicate your medical history. Plus – they have tons of cool, sporty designs for under $30.

 

One month before you go:

  1. If you have a pacemaker or defibrillator, notify the Pacemaker Lab of your upcoming relocation.
  2. By now, you may have met your new roommate(s) either online or in-person. Take this time to let them know about your heart history. It’s important to have those closest to you know this about you so they can get you help, if needed.shutterstock_317941118
    • Remember – they might have their own medical conditions to share with you.
  3. If you have been contacted by your Resident Advisor (RA), let her/him know your heart history, too. Be sure you inform them shortly after arriving on campus.
  4. Refill your prescriptions. Go to college with a full supply.
  5. Contact your chosen cardiologist near your college. Set up an appointment around your arrival, if needed.

 

Arriving on Campus:

  1. Be sure your roommate(s) are aware of your heart history. Answer their questions, or explain what’s private versus what they need to know.
  2. Touch base with your RA and Student Health. Ask them where AEDs are located on campus, and locate the one closest to your room.
  3. Find the closest insurance-covered pharmacy. Inform your cardiologist and PCP of that pharmacy’s telephone and fax numbers. Do a practice run to the nearest Emergency Room.

 

Life on Campus:

  1. As you get to know people and establish close friends, let them know about your heart condition. It’s important that those you spend time with know how to help you.
  2. Get flu shots every Fall, and let your PCP’s office know you received it.
  3. Caffeine, marijuana, alcohol, and other stimulants can cause arrhythmias. Be cautious.
  4. Stay hydrated, exercise as directed, and get plenty of rest!
  5. Never ignore any symptoms!  Report to Student Health or call your cardiologist. Don’t wait! Early intervention can help prevent serious problems.
  6. Weekend road trip or Spring Break? Be sure to take your file of information with you when you travel.
  7. Most important of all -- Have Fun! 

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us at HLHS@mayo.edu to learn more.


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:

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