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JimW

New members - please read this first!

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New members,

 

Welcome to the discussion forum of the Adult Congenital Heart Association! We're glad that you found us and hope that you find the interaction with other ACHD patients useful and informative. Here is some basic information that other members have found useful as they learned more about ACHD in general and ACHA in particular. Please don't forget to explore the other resources available on this website that are conveniently linked on the floating blue bar above.

 

 

Basic information about adult congenital heart defects/disease (ACHD)

 

Basic info: Basic information about ACHD is available online on the main website.

Fact Sheet

 

Bethesda & ACHD Care guidelines: The Adult Congenital Heart Association supports the recommendations of the American College of Cardiology regarding the medical treatment of adults with congenital heart disease/defects, commonly called the Bethesda conference guidelines. The guidelines were most recently updated in 2018 and can be viewed in full here. Because this article was written by medical professionals for other medical professionals, ACHA is working to develop a version for patients based on these new recommendations but you can access the current version here.  

 

ACHA Clinic Directory: These guidelines recommend that all patients be assessed at least once by an ACHD regional center. We have a directory of ACHD clinics hosted on our website. Access to it is a benefit of membership.

 

ACHA Health Passport: Once you've found an ACHD cardiologist with whom you are comfortable, we recommend that you summarize, together with your cardiologist, your health details in an ACHA Health Passport that is a benefit of membership. For your convenience, an online version of the passport is available here but you can request a hard copy at any time by emailing info@achaheart.org. 

 

Antibiotic prophylaxis: In the past, it was recommended that most ACHD patients take antibiotics before dental procedures to avoid bacterial endocarditis. These guidelines from the American Heart Association were updated in 2008. Note that some cardiologists may be more conservative than the AHA guidelines. Please consult with your medical professional for advice regarding antibiotic prophylaxis before dental procedures and other procedures such as body piercing, tattoos, and endoscopies which carry the risk of blood borne infections. For more information on dental issues and prophylaxis in ACHD patients, click here.

 

Open heart surgery advice: If you have been told that you may be needing open heart surgery, you can find support from other members of the community in the Preparing for Surgery/Procedure & Recovery thread under the Living with CHD forum.

 

How to use the discussion forum

 

Forum policies: Before posting for the first time, please read the forum policies. Please feel free to contact any of the moderators with questions or concerns.

 

Discussion Forum: The discussion forum uses Invision Community. Please watch the online tutorial available here to learn how to use the forum. If you don’t find an answer to your question, contact one of the moderators. Please note that not all members continue to participate actively on the message board. If you're looking for someone who may have the same defect as yours, it is helpful to search the message board for all posts that contain the name of your defect or visit the Defect and Topic Specific sub-forum under CHD Conversations to find your defect. To search, click on the word “Search” after the little magnifying glass icon and enter the word of phrase of interest in the appropriate field. You can also search users, follow other members and private message by clicking on their profile. 

 

Common definitions and acronyms: The users tend to use a lot of jargon here to minimize typing out long medical names. We have a 

 

Avatars: Many people add their own avatars, or photos by their names in posts on the message board. Refer to the tutorial to learn how to update your profile.

 

Logging In:  If you encounter problems with your current browser, please use another browser such as Google Chrome, Internet Explorer, Mozilla Firefox, etc.

Edited by MSharpe_TN
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Looks good Jim,

 

How about putting the acronyms and CHS "terms" in there as well?

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Good idea. I actually have been working on a medical jargon translation table as well.

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perhaps also listing a more complete defects list? i know right now it lists the more common CHD's, but a complete list might be helpful? maybe just the 35 recognized ones and their abbreviations? NOT all the variations of course! That would take way too long and change constantly.

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