Subscribe today for more stories, tips, and updates.

Cincinnati Children's Blog
  • Subscribe
  • CincinnatiChildrens.org
  • Contact Us
  • Blog
  • Healthy Living
  • Rare and Complex Conditions
  • Safety and Prevention
  • Heart Conditions
  • Learning and Growing
  • Research and Discoveries
  • ?
  • Blog
  • Healthy Living
  • Rare and Complex Conditions
  • Safety and Prevention
  • Heart Conditions
  • Learning and Growing
  • Research and Discoveries
  • ?
  • Subscribe
  • CincinnatiChildrens.org
  • Contact Us
HOME/Heart Conditions/Born with Congenital Heart Disease: Questions to Ask A Doctor

Born with Congenital Heart Disease: Questions to Ask A Doctor

Born with Congenital Heart Disease: Questions to Ask A Doctor
October 24, 2018
0 Comments
By: Nicole Brown, MD

Adults who were born with congenital heart disease (CHD) need to be followed by a cardiologist with specific training on the condition. Adults with CHD typically fall into two categories: those who have been seen all along, and those who are “lost to care.” This blog post by my colleague outlines what it means to be lost to care. 

Whether you’ve become lost to care over the years, or have been followed all of your life, it’s important to have an ongoing dialogue with your cardiologist. To help keep this going, I would like to share a list of questions with you. Knowing the answers will help you better understand and manage your heart condition. Please keep in mind that these don’t need to be answered in one appointment! The goal is an ongoing conversation over time:

Born with Congenital Heart Disease: Questions to Ask Your Doctor

 

IN AN EMERGENCY

  1. What words should I use to describe my heart condition?

    If you find yourself in the emergency room, or in another place where a different doctor needs to understand your heart condition, you’ll need to be able to tell him or her what you have. Ask your cardiologist for the name of your condition, how many surgeries you’ve had, and what the residual issues are. Ex: I have tetralogy of Fallot. I’ve had one surgery, and will probably need to have my pulmonary artery replaced in a few years.

  2. Can I have a medical record summary?

    In that same vein, a one-page medical record summary is handy to have in an emergency. This could be a letter, PDF, or email. And most importantly, keep your cardiologist’s contact information in your phone so that he or she can be contacted in an emergency.

  3. Where should I go?

    Have a conversation with your cardiologist about where he or she would like you to go if you’re having a heart emergency. Based on your heart condition, would it be better to go to your cardiologist, or go directly to the ER?

  4. Which arm should I have my blood pressure taken in?

    Some patients with CHD don’t have blood pressure in one of their arms. This is because they’ve had a procedure, like a Blalock-Taussig-Thomas shunt, which has made their blood pressure artificially low on one side. For a doctor who is not familiar with this, it can be alarming (but doesn’t need to be). Having this information could prevent them from performing unnecessary treatments.

ONGOING CARE

  1. Is my heart fixed, or will I have residual issues?

    It is important for you to understand the current condition of your heart, and what procedures you might need in the future. For instance, if you’ve had a valve repair, is it still working? Or will it need to be replaced? What signs and symptoms should you watch for?

  2. What does care look like? How often do I need to be seen?

    Regular follow-up care is important for avoiding complications and maintaining a healthy heart.

  3. Do I need to take medication? Or avoid any?

    It’s important to understand answers to these questions. Do I need a daily medication to maintain my heart health? If you’re taking heart medication, it’s important to ask your cardiologist or pharmacist if there are any other medications that you should avoid. For instance, if you have high blood pressure, you might need to avoid certain cold medications.

  4. Could my anxiety and depression be related to my heart condition?

    About one third of adults with CHD have anxiety or depression, but may not realize it could be related to their heart condition. If you’re experiencing these symptoms, please know that they are normal, and your cardiologist can help you find the appropriate treatment.

  5. Do I have any exercise limitations? 

    It is important to learn what your personal healthy level of exercise is. Your cardiologist may prescribe a program of cardiac or pulmonary rehab, depending on your condition.

RELATED TO THE CHILDBEARING YEARS

  1. As a woman, what do I need to consider related to contraception and pregnancy and my heart condition?

    Some women with certain heart conditions shouldn’t take birth control or other medications with estrogen. Although most women can have a healthy pregnancy, it is important to ensure that your heart health is optimized before pregnancy and you are appropriately monitored during pregnancy, delivery, and the postpartum period. Read more here.

  2. As a man, what should my partner and I be thinking about when considering pregnancy?

    Generally, your risk of passing CHD onto your child is very low. For some familial conditions it may be appropriate for you to meet with a genetic counselor before pregnancy to determine the risk of passing your condition onto your child. Your doctor can also tell you if your partner needs to have a fetal echo during pregnancy.

NON-CARDIAC PROCEDURES

  1. If I’m having a non-cardiac procedure, are there any precautions that my medical team needs to take?

    If a procedure requires anesthesia, it’s important for your cardiologist to speak to your surgeon and/or anesthesiologist. They can communicate certain precautions to make sure that they procedure is safe for your heart.

  2. If I’m having a dental procedure, do I need to take antibiotics?

TRAVEL

  1. If I have a problem while I’m traveling, where should I go?

    The Adult Congenital Heart Association (ACHA) has a list of national and international clinics. Ask how you should communicate with your cardiologist while traveling.

  2. Do I have any travel limitations like airplanes or high altitudes?

    Generally speaking, air travel is safe for most heart patients, but your condition may require a few precautions. Likewise, some complex heart conditions, especially those associated with pulmonary hypertension, may need to avoid higher altitudes.

LONG-TERM OUTLOOK

  1. What does the future look like for my condition long term?

    Consider asking your doctor these questions. What kinds of things do I need to consider down the road? Will I need a re-operation? Will this affect the length of my life?

  2. I’m not that old, do I need to think about a living will and a health care power of attorney?

    It’s important for all adults to have a plan in place, but especially those with congenital heart disease. You need define whom you would like to make decisions on your behalf, in the unlikely event that you are unable to make decisions for yourself. These choices are best made when you are healthy and not under stress.

Read Next: Discussing these questions with your cardiologist can help lead to greater peace of mind. For more resources, explore the Adult Congenital Heart Disease Program at Cincinnati Children’s.

Contact the Heart Institue at Cincinnati Children’s
Call: 844-202-1574 Fill out a form and a team member will be in touch Find a location near you
Subscribe today for more stories, tips, and updates.

Related Articles

Caring for the Caregivers of Children with Congenital Heart Disease 
Caring for the Caregivers of Children with Congenital Heart Disease 
A Lifetime of Care – Transitioning from Pediatric to Adult Cardiology
A Lifetime of Care – Transitioning from Pediatric to Adult Cardiology
Born with a Heart Defect and Lost to Care
Born with a Heart Defect and Lost to Care
Born With a Heart Defect: Q&A About The COVID-19 Vaccine 
Born With a Heart Defect: Q&A About The COVID-19 Vaccine 
TAGS:
  • ACHD
  • adult congenital heart disease
Avatar photo

About the author: Nicole Brown, MD

Nicole Brown, MD is a cardiologist in the Adult Congenital Heart Disease Program at Cincinnati Children's. She trained in both Internal Medicine and General Pediatrics in Cincinnati prior to completing her Pediatric Cardiology Fellowship in Pittsburgh. Dr. Brown returned to Cincinnati for an additional fellowship in ACHD and remained on staff as faculty. She is board certified in ACHD, Pediatric Cardiology, Internal Medicine, and Pediatrics. She is passionate about caring for adults with congenital heart disease and helping women with CHD live healthy and fulfilling lives.

Write A Comment

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

No Comments Yet

Topics

  • Cancer and Blood Diseases
  • Child Development and Behavior
  • Childhood Obesity
  • Chronic Care Networks
  • Cincinnati Walks for Kids
  • Featured Faces
  • Fetal Conditions
  • Fitness and Nutrition
  • Food Allergies
  • Ghana 2012
  • Health Care Public Policy
  • Health Care Quality
  • Health Care Reform
  • Healthy Living
  • Heart Conditions
  • Hospital Operations
  • How We Do It
  • Learning and Growing
  • Meet The Team
  • Nurses Week 2012
  • Patient Family Experience
  • Patient Flow
  • Patient Safety
  • Patient Stories
  • Pin of the Week
  • Radiology
  • Rare and Complex Conditions
  • Research
  • Research and Discoveries
  • Safety and Prevention
  • Share Your Story
  • Technology
  • Uncategorized
  • Vaccines
  • Volunteerism
  • What Makes Us Different
  • What's New
See All Topics
See Less Topics

Subscribe

Never miss a post! Sign up to get new blog updates delivered to your email.

Popular Posts

  • 6 Questions to Ask When Your Child Complains of Chest Pain 1.7k views
  • Caring for the Caregivers of Children with Congenital Heart Disease  1.7k views
  • Febrile Seizures: Why They Happen and What to Do 739 views
  • Laryngomalacia: Is My Child’s Noisy Breathing Serious? 653 views
  • Bedwetting Solutions: Tips for Helping Your Child Overcome It 651 views
  • Stuttering In Young Kids: When To Be Concerned 647 views
About

The Cincinnati Children’s blog features thoughts and perspectives from our experts on all things pediatric health. This blog does not provide medical advice, diagnosis, or treatment. Learn More »

Contact Us
  • 3333 Burnet Avenue, Cincinnati, Ohio 45229-3026
  • 1-513-636-4200 | 1-800-344-2462
  • TTY: 1-513-636-4900
  • socialmedia@cchmc.org
Connect With Us
  • Subscribe
  • CincinnatiChildrens.org
  • Contact Us

© 2009-2022 Cincinnati Children’s Hospital Medical Center