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
Conquering
CHD: CHD Support
Current
Congenital Heart Defects Research Activities | CDC
Current
research status on the psychological situation of parents of children with
congenital heart disease
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
Self-help
groups for patients with coronary heart disease as a resource for rehabilitation
and secondary prevention-what is the evidence?
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
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