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JimW

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About JimW

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  1. Good idea. I actually have been working on a medical jargon translation table as well.
  2. 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.
  3. Updated forum policy to note that accounts with profiles with link spam (http://en.wikipedia.org/wiki/Link_spam) will be deleted. If anyone feels that their account has been deleted unfairly, please feel free to contact our Moderators directly via email. Jim
  4. Personal Information • To protect your privacy, we suggest using a username, your first name, or first name and initial of your last name, however you can make your profile as open as you would like based on your preference. You can correspond with an individual member via the private messages and email functions of the forum. To do so, go to the person's profile, go to the person's profile and click on the "Message" button located in the cover photo area of the profile. • Information in your profile can be changed in the following way: 1. Log in to the forum 2. Click the Profile link at the top of the page 3. Click 'Edit Profile' in the top right corner. 4. Make and save your edits. • If you have any problems with this procedure, please contact a moderator via private message. If you need further information on how to update your profile, watch the tutorial available on our website. • Any contact and personal information that you submit directly to ACHA (in membership forms, etc.) will be kept strictly confidential, and we will not share it with anyone without your express written or electronic permission. Respect for others: • ACHA's discussion forum provides a safe and comfortable place for individuals with heart defects and their families to share experiences and get support. All participants should treat each other with respect and consideration. Members whose interactions with others cause concern or discomfort will be removed from the forum. Trolling, defined as intentionally posting controversial, disruptive, sarcastic or insulting remarks in order to get the attention of or to offend ACHA or its members, is not allowed. Flaming, defined as intentionally hurting or insulting someone is not allowed. Posts that have trolling or flaming characteristics will be deleted. Registered users who engage in such behavior are subject to removal. Medical advice: • Asking for or giving medical advice is not allowed. • When responding to posts about medical issues, your answers should be based on your own experience and should not be substitutes for professional medical advice. Please consult your physician about questions and concerns. • Links to posts that advertise medical products, including over the counter medications and herbal products etc, are not allowed on this forum. Advertising and Fundraising: • The following are not allowed: Advertising to sell merchandise for personal gain. Advertisement and links to websites that advertise any product, including medical products, over the counter medications and herbal products, multi-level marketing, etc. Fundraising for any cause other than approved fundraising for ACHA, including personal fundraisers. Research requests without prior approval • Fundraising for ACHA and research requests are allowed upon approval All fundraising posts and research requests should be submitted using the guidelines available here prior to posting. Religious and Political Posts: • Religious and political proselytizing is not allowed. Members cannot try to convert (a person) from one belief (political or religious), doctrine, cause, or faith to another. This includes criticism of different beliefs. Members who wish to state that they feel God plays an important part in their life may do so as our members are always allowed to share what has helped them. ACHA reserves the right to edit or remove posts or registered users for any reason. The following types of posts will be edited and/or removed: • Medical Advice • Fundraising not approved by ACHA • Hostile, obscene or derogatory material • Personal financial solicitations • Flaming or Trolling • Religious or political proselytizing • Requests for research subjects unless approved by ACHA • Links to commercial websites in signatures will be reviewed and removed if unrelated to CHD and found to be inappropriate • Contact information or personally identifying information of another member. ACHA reserves the right to delete the following types of posts, as well as to ban the user: • Any member who registers with a fake email address • Posting of link spam (http://en.wikipedia.org/wiki/Link_spam) • Abuse of the forum for financial gain • If anyone feels that their account has been deleted unfairly, please feel free to contact our Moderators directly via email or private message only. Forum Moderation: • Individual forums may have specific moderators. If you have a question or concern about content on a particular forum, please contact the moderator listed in the forum's description or one of our general moderators, Misty Sharpe, Paula Miller or KerriS, using the Staff page. • Please use the Support form for general questions about ACHA or contact an ACHA staff member via email. We hope that you will enjoy these forums and find them to be valuable. Jim This post was edited by Paula Miller on 8/25/2011 and 2/28/2012. This post was edited by Misty Sharpe on 2/5/2019 and 2/15/2019.
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