We know that many people with CHD want to talk to their doctors about their long term health plans and advance care planning. Advance care planning just means planning ahead of time in case a person becomes really ill and unable to speak for themselves. They can let other people know ahead of time what is important to them.
We actually think that it makes sense for EVERYONE, whether or not they have CHD, to take time to think about (and write down) their future wishes for their health care. Here are 5 helpful steps:
Some websites that tackle this information look like they are geared for much older people, but really have good information for people of all ages.
Click here for information about advance care planning and advance directives from the Adult Congenital Heart Association.
In the US, long term health information is available here
In Canada, you can check out advance care planning resources by clicking here.
This website is designed specifically for young people with congenital heart disease. The goal is to provide information to help people who are getting ready to move (or have recently moved) to adult heart care. We use the term ‘transition’ to describe this process. Family, friends and health care providers may also find this website helpful.
Please be advised this site does not provide medical advice. All of the content on this website is provided for informational purposes only. It is not a substitute for professional medical advice, diagnosis or treatment. If you have or suspect you have a health problem, please consult your family physician. If you have or suspect you are experiencing a health emergency, please promptly visit a Hospital Emergency Department in your area. Reliance on any information provided on or provided in relation to the site is solely at your own risk. Contributors to this website are not responsible, nor liable, for any claim, loss or damage arising from the use of the information contained within this site.
Any websites linked from this website are created by other organizations. Those organizations are responsible for the information contained within their sites. We are not responsible for the content of linked third-party sites or third-party advertisements and do not make any representations regarding their content or accuracy. Your use of third-party websites is at your own risk and subject to the terms and conditions of use for such sites. Any specific comments regarding these sites should be directed toward that individual organization.
We have a simple ‘Getting to Know You’ survey that we ask all visitors to complete (we don’t ask for any personal health information). Website browsing activity will be monitored so that we can learn about the people who visit the website, how often people visit the website, and the web pages that are visited most often. This will help us decide which changes and improvements to make to the website in the future. Results from this project will be described for groups of website visitors (i.e., not for individual users).
Anyone can visit this website and most users will create their own User IDs and passwords. However, there are also Adult Congenital Heart Disease (ACHD) and pediatric cardiology programs that have officially joined the iHeartChange team and work together to keep this website going. (You can find a list of the ACHD programs in the ‘Welcome to Adult Care’ section of the website). Some of these programs might choose to assign User IDs so that they can track of and how patients from their own programs visit the website. They might even want to track this for research. If you have been assigned a User ID from a program, that program might ask us to give them information about your answers to the ‘Getting to Know You’ survey, how many times you log into the website and which web pages you visit.
Please click below to indicate that you have read the Disclaimer.
We recommend that you register by creating your own User ID and password.
This will allow you to log in again and keep track of which pages on the website you visit.
If you visit them all, you can earn a transition diploma!
If you register, it also means that you won’t be shown the disclaimer & survey each time that you visit.
However, registration is not required.
Reminder: please write down your User ID and password for safekeeping
because we don’t store your email address for password reset!
Would you like to Login or Register?
We are almost there!
Now we would like to get to know you just a little bit.
Knowing your background will help us make this website even better for you.
We won’t ask you for personal health information.
This short survey will only take a minute or two to complete.
We hope you enjoy your visit!
Would you like to take our survey?
HELPING YOU MAKE THE MOVE TO ADULT CONGENITAL HEART DISEASE CARE
Thanks for checking out our website!
This website is designed mainly for young people with congenital heart disease (CHD). The aim is to help people feel more ready to “transition” from pediatric to adult care. And we know that family, friends and health care providers might also want to check it out!
Since this is your first visit, please read our disclaimer!