Congenital Heart Disease (CHD) – Information and Resources
To know more about CHD, your doctor is your best resource since he/she knows your condition best.
· First, ask your doctor what your actual diagnosis is and what your actual treatment plan is. Your diagnosis/treatment should make sense to you as a patient. If it does not, ask your doctor to clarify until you do understand and agree.
· It is a fair question to ask why he/she thinks the diagnosis is CHD, instead of something else.
· Ask what all the treatment options are and what is recommended.
· If you have other health conditions, ask how CHD might interact with those other conditions, especially treatment and medication.
· Ask what you can do as a patient to help yourself manage CHD.
· Lastly, ask your doctor for an Information Prescription as described in this article - “Why Doctors Should Give All Patients an Information Prescription”. The Information Prescription should at least have your diagnosis, treatment plan, and maybe your other health condition(s) that might interact with your CHD. With this Information Prescription, you can then find information on your own and/or check with a Librarian, particularly a Medical Librarian to help you find good reliable information.
If you as a patient or caregiver are not satisfied, it might be good to get a second opinion.
Your doctor might not have the time, skill, and/or resources to answer all your day-to-day questions of how to manage CHD, however. The links below are provided as a start to learning how to manage your CHD on a daily basis. Be sure, however, to keep your doctor informed of your status on a regular basis.
***
Below are some links that you might find interesting. If you have any questions, check with a healthcare professional, however.
The Heart Community - CHD Support (Facebook Group)
About Congenital Heart Defects | American Heart Association
What is Congenital Heart Disease (CHD)? (From Wikipedia)
Brain Injury in Newborns With Congenital Heart Disease
CHD Support Groups and Organizations for Heart Families
Congenital Heart Defects | American Heart Association
Congenital heart defects and critical CHDs - March of Dimes
Congenital Heart Disease - Health Encyclopedia - URMC
Congenital Heart Disease - Stanford Children's Health
Congenital heart disease (D) - WHO | World Health Organization
Congenital Heart Disease | Congenital Heart Defects
Congenital Heart Disease | UCSF Fetal Treatment Center
Congenital heart disease in adults
Congenital Heart Disease Resources Brochure
Current Congenital Heart Defects Research Activities | CDC
Emotional and Family Issues in Children with Heart Disease ...
Factors That May Lead to a Congenital Heart Defect (CHD ...
Get the Facts About Congenital Heart Disease | Children's ...
Heart Defects & Heart Disease Advocacy & Support Groups
Heart to Heart: CHD Resources for WA Families & Caregivers ...
How to Find CHD Support Groups Near Me - Conquering CHD
Learn about Congenital Heart Defects | CDC
Links to Other Congenital Heart Defects Resources | CDC
Living with a Congenital Heart Defect | CDC
Parents of children with congenital heart disease Sources of support
Support | Kids With Heart NACHD
Support Groups | Adult Congenital Heart Disease
The Heart Community Collection- A New Kind Of Bookstore
Use of Special Education Services among Children with Congenital Heart Defects
What are Congenital Heart Defects? | CDC
***
To find more - You can copy and paste the following Search String into your favorite Internet Browser to find more information/resources. Click through the Browser Tabs to find ALL, IMAGES, NEWS, VIDEOS, SHOPPING, MAPS, and maybe even more.
(“congenital heart defect” OR CHD OR “congenital heart anomaly” OR “congenital heart disease”)
Your local library might be able to help you with other search terms and help you keep only the good reliable information from what you find. If in doubt, check with your doctor to find out whether the information/resources you find are right for you.
***
You can also make Alerts to be delivered to your e-mail at Google Alerts and/or Talkwalker - notifying you of CHD topics of particular interest to you. Use the Search String above as a start, then add additional words to focus on your particular concerns, e.g.:
· ((“congenital heart defect” OR CHD OR “congenital heart anomaly” OR “congenital heart disease”) Wisconsin) – Of course, you can put in your own locality or any other word(s), e.g. children, infants, adults, parents, caregivers, etc.
· Experiment with search strings until you find them to your liking.
· You can have as many Email Alerts as you want to keep you informed.
· Reminder – please check with your doctor to make sure the information you found is right for you.
***
As a Patient, YOU are the most important member of your Healthcare Team. With good medical healthcare, information, resources, and support you can learn to manage CHD in your life.
Disclaimer – Article is for information only and is not medical advice – Additional Disclaimers at TG Ideas LLC
