Living with CHD – Adults
Estimates suggest that there are more than 1.4 million adults living with CHD in the U.S. Thanks to improved treatment for congenital heart disease, there are now more adults with CHD than children. However, there is no cure for CHD and adults face unique health and personal challenges as a result. You are not alone.
Teen and Adult Patient Facebook Group
This closed Facebook group is a place for teens and adults with CHD to connect with others who face similar struggles and celebrate similar victories. This group is for teen and adult patients only.
CHD affects every aspect of our lives. As we become adults and the role of managing our care and our personal lives shifts from our parents to ourselves, it can feel isolating and confusing. Knowing others can relate and perhaps offer insight into the situations most difficult to navigate can be of great comfort and help boost the confidence we need to persevere. Our ACHD video story series features patients just like you, sharing how they have faced the impact of CHD in their lives.
CHD and Body Image - Trinity
As teens, we begin to notice big changes with our bodies. Adding scars and chronic illness can add to the stress of becoming adults amidst peers we perceive to be "normal." Trinity, in her video, shares with us how she deals with body image as a young adult.
CHD and Sports - Levi
Growing up with Congenital Heart Disease, we often have to give up activities that our peers get to enjoy. But that doesn't stop us from finding hobbies and dreams to help live our lives to the fullest, often defying odds set for us in our youth. In his video, Levi shares his story, from giving up one sport to finding a new way to challenge himself physically and the adventure of starting a family.
CHD and Mental Health - Amy
According to the CHPHC, up to 50% of adult patients with CHD experience "at least one lifetime mood or anxiety disorder." Adult patient, Amy, discusses her experience with mental health issues and the impact CHD has had on hers.
CHD and Transitions - Marcia
Transition isn't just a step toward adult care. It's also a big part of our daily lives. Marcia tells us, in her video, about the every day transitions she faced growing up.
Post-op Tips & Tricks - Edward
One year after surgery, Adult CHD patient, Edward Bauman, decided to mark the occasion by creating a video that shares his experience preparing for and immediately following his procedure. Watch to hear about his journey and his tips and tricks that may help on yours!
What is ACHD
Understanding Congenital Heart Defects into Adulthood
This CardioSmart resource, from ACC, breaks down all aspects of Adult Congenital Heart Disease, what it is, how to manage your care, and where to find additional support .
Arrhythmias and Cardiac Devices
Complications from surgery, scar tissue left behind, and an underlying disease can bring about arrhythmias in CHD patients and lead to need for a cardiac device.
What Genetic Testing Can Reveal About ACHD
In this webinar, courtesy of Children's Hospital Wisconsin, Medical Geneticist, Dr.Gabrielle Geddes, discusses general genetic concepts, genetic causes of CHD available testing, and reasons one might consider being tested. Watch to learn more about genetics and CHD.
Managing Your Care
Top 10 Things to Remember as an Adult with CHD
There is no cure for CHD. Even if you are feeling well, it is important to be aware of these key details about your health.
This interactive checklist guides patients gradually through the process of transition from pediatric to the appropriate adult care and helps them take ownership of that care. This resources is set up in phases, rather than by age, making it useful to patients across the lifespan.
Guided Questions Tool - ACHD Edition
A list of questions for ACHD patients and families to ask their care team.
Guide to Your ACHD Care
This resource offers tips for maintaining care through adulthood and includes a summary chart of the ACC Guidelines to ACHD Care.
Parent Guide to Your Child's Future ACHD Care
This resource offers tips for helping your child maintain care into adulthood and includes a summary chart of the ACC Guidelines to ACHD Care.
Heart Talk: Transition - Taking Over the Reins and Staying in Care
Cardiologist Dr. Keila Lopez, creator of Texas Children's Transition Program, and Conquering CHD's ACHD Coordinator, Jennifer Weiner, discuss Transition, being your own best advocate, and important things to keep in mind as an adult with CHD .
Are you starting Adult Congenital Heart Disease (ACHD) care for the first time or moving away from your current center? Finding a new team and getting through your first visit with a new doctor can be challenging. This resource provides steps to consider as you begin choosing your new care team, prepare for your first appointment, and continue follow up care.
2018 AHA/ACC Guideline for the Management of Adults with Congenital Heart Disease
In 2018, the American Heart Association and the American College of Cardiology released an update to the 2008 guidelines to care for adults with congenital heart disease. This update includes a new classification system for specific lesions, as well as the recommended components of a comprehensive ACHD program. Follow this link to a pdf of the complete guidelines.
Congenital Heart Disease Clinic Directory
The American College of Cardiology provides the ACC Congenital Heart Disease Clinic Directory as a service to patients, families and providers to find specialty congenital heart disease care. This directory allows users to search - by name or location - for services, centers, and cardiovascular specialists in pediatric cardiology and adult congenital heart disease.
ACHA Clinic Directory
Travel with confidence knowing where the nearest specialty clinic is located.
ACHA Personal Health Passport
Keep your necessary medical information in your purse or pocket by recording it in this booklet.
Understanding Health Insurance for College Students & New Grads
The current health insurance system in the U.S. can be a complicated system to navigate, so this guide is designed to help students understand staying on their parents plan, the Affordable Care Act, how to choose the right plan, and common insurance terms that every patient should understand.
School and Work
Top Things to Know: College Students with Congenital Heart Disease
A congenital heart defect (CHD) is a lifelong condition. While a CHD is never “cured,” there are plenty of opportunities to thrive in college with the disease if you remain healthy and stay in medical care. Here are some tips to help your move to college with a CHD.
Social Security Disability Benefits – Adults
The Social Security Administration (SSA) offers monthly resources for people who cannot work. While a CHD does not automatically qualify, thousands of adults may be eligible.
Family and Medical Leave Act (FMLA) Fact Sheet
As adults, we can't have our parents call us in sick to school when we have extended medical needs or family to take care of, but we may not be eligible for extended disability leave from work. The Family Medical Leave Act (FMLA) could be a good option for you, if you or your loved one need more than a couple days off of work to manage a medical issue. Check out this resource to find details on what and who FMLA covers.
20 Scholarships for Students with Health Conditions
This guide provides a look at some scholarships available for students with medical conditions, as well as advice on how to win them. While several cover other conditions some do pertain to those with CHD. *Please note, this resource is not maintained by CCHD, scholarship info is updated by a third party.
Family & Lifestyle
Taboo Subjects Blog Series
This series takes a look at a few of the “taboo” subjects that come up when thinking about life with CHD. Topics include: Tattoos, Career, College, Contraception and other "adult" activities.
Toolkit: Talking to Your Children about Your Health
This resource, developed by NHS University Hospitals Bristol, offers tips on how to talk to your children about your health. With consent, the format has been modified.
Pregnancy and CHD Blog Series
This series discusses several different aspects of pregnancy and CHD.
Toolkit: Planning for a Family
This resource, developed by NHS University Hospitals Bristol, offers tips on first steps in the decision to plan for a family while living with chronic illness. With consent, format has been modified.
Toolkit: Managing Stress
This resource, developed by NHS University Hospitals Bristol, offers tips to manage the stress that can accompany chronic illness. With consent, the format has been modified.
Toolkit: Managing Anxiety
This resource, developed by NHS University Hospitals Bristol, offers tips to manage the anxiety that can accompany chronic illness. With consent, the format has been modified.
Toolkit: Managing Depression
This resource, developed by NHS University Hospitals Bristol, offers tips to manage the depression that can accompany chronic illness. With consent, the format has been modified.
Transitioning with Special Needs
National Parent Center on Transition and Employment
A resource for information on transition topics, such as independent living, education, and employment.
Opening Doors to Self Determination Skills - A Handbook
A handbook for students, teachers, counselors, and parents in preparing for life after high school.
Video guides to skills needed for transitioning to adult care and other transition resources.
Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. We connect a network of family organizations across the United States that provide support to families of CYSHCN. We promote partnership with families at all levels of health care–individual and policy decision-making levels—in order to improve health care services and policies for children.
Informing Families is a resource provided by the Washington State Developmental Disabilities Council, in partnership with the Developmental Disabilities Administration. Informing Families offers tools and tips on planning for the future.
Autism Speaks - Transition Toolkit
The Autism Speaks Transition Tool Kit will help guide you on the journey from adolescence to adulthood.
Advocacy and innovation for and with individuals with intellectual and developmental disabilities.
U.S. Department of Health and Human Services, Administration for Community Living
Advancing independence, integration, and inclusion throughout life.
EARN - Employer Assistance and Resource Network on Disability Inclusion
Every state has a vocational rehabilitation agency that is designed to help individuals with disabilities meet their employment goals. Vocational rehabilitation agencies assist individuals with disabilities to prepare for, obtain, maintain, or regain employment. This site connects you to these agencies.
Planning for Transition to Adulthood for Youth with Developmental and Intellectual Disabilities
This list provides resources for transition to adulthood for youth with developmental and intellectual disabilities and their families, including high school transition, legal issues and employment. Some resources apply specifically to Washington State residents.
Conquering CHD Stories
Eva Burt Edinger
“My CHD went undetected for the first year and a half of my life. After being diagnosed with an Atrial Septal Defect, I underwent open heart surgery, spent several weeks in intensive care, and was not expected to live. Now, as an adult, I have no physical restrictions and I live life to the fullest!...Full Story>