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JimW

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About JimW

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  1. We've raised $156+ so far this year through Goodsearch and Goodshop! You can now add a Goodsearch toolbar to IE and Firefox to help make sure that any shopping events raise money for the charity of your choice. I've added it to my Firefox browser. For more info, see here: http://www.goodsearch.com/toolbars.aspx
  2. No, I've never gotten one, and I think that's a weakness of their system. But then again you don't need to register with Goodsearch to benefit the charity, so that helps alleviate privacy concerns.
  3. Steve, I don't think they're meant to replace, but to expand on the problem. Bethesda 32, in my recollection, stated the problem of ACHD and recommended a strategy of developing regional centers of excellence. The ACC care guidelines assume Bethesda 32 as a starting point in that one of the primary recommendations is that the careof ACHD patients should be managed at these regional centers, and of course they go on to give specific recommendations for the various defect types. Nancy, thanks. Over the holidays I worked on a first draft of a patient/family summary of the care guidelines which will ultimately be released like our summary of Bethesda 32. Since I had to interpret the ACC document that was written in "doctor-speak", we of course need to make sure that I caught the most important points and that I translated the words into plain language without changing the original intent of the authors. It should be released in the coming months.
  4. I've been meaning to post a link to these for some time now since they came out last year, but haven't because of lack of time to write a detailed post. Let me just summarize though that for the first time we have approved guidelines for recommended care that we (patients and non-ACHD docs) can use to guide our basic treatment. They're definitely worth reading for all of us, at least the sections that are specific to our defects. The biggest problem is that there are only maybe 50 doctors in the US that have been specifically trained in ACHD care. Most of the ACHDers in the country are being seen by adult cardiologists or PCPs, who really don't know much about CHD and what to look out for. This document gives these care providers the basic info that they need to care for us, and also info on when they need to refer us to trained specialists for consultation and care. There's a great section on cardiosource.com here: http://www.cardiosource.com/guidelinefocus/gfc_achd.asp that has links to many relevant topics. The executive summary (61 pages) is here: http://content.onlinejacc.org/cgi/reprint/52/23/1890.pdf and the full text (121 pages) is here: http://content.onlinejacc.org/cgi/reprintframed/52/23/e143 After reading them, you can test your knowledge with the case studies on the first link. I did the one for the "40-Year-Old Man Status/Post Tetralogy of Fallot Repair Presents With Palpitations and Decreased Exercise Tolerance" and got all the questions right! But, then again, I lived through those symptoms and had appropriate care afterward, so I had a bit of an unfair advantage.
  5. Eliza has posted this info before, but I thought I'd post clear instructions on how to do it. A company named Goodsearch has partnered with Yahoo to provide search results while paying a small commission for each search performed to a nonprofit organization of your choice, with the commission being between 1 and 1.3 cents per search. I enrolled ACHA in the program back in August and some of us have been using Goodsearch as our primary search engine on the web. They pay commissions on online purchases made through Goodshop as well. With the holidays coming up, I've been using Goodshop for all my online gift purchases and ACHA is benefiting from my stimulation of the economy . It's quite easy to do. First, go to http://www.goodsearch.com and enter "adult congenital" in the field as shown below and click on the Verify button. You should only need to do this once on each computer that you use since they store a "cookie" on your computer with your selection of ACHA within it. Your screen should show "Adult Congenital Heart Association" as shown below. Now all you need to do is go to http://www.goodsearch.com, enter your search terms in the upper field and click Search. There have been just a few of us using Goodsearch so far, but we've raised more than $400 dollars. If the entire ACHA community and our friends use this search engine, you can imagine how much money it would raise. I mentioned online shopping as well. If you click on the Shopping tab to the right of the Web, Images, and Video tabs, you enter the Goodshop site. On the right the links to many popular stores, including Amazon.com and more. If the store in which you want to shop isn't shown on the right, click on the pulldown field which I've circled in the shot above and select the store of your choice. You'll automatically be transferred to that store, and ACHA will get a commission from each item that you purchase in that session. I hope this tutorial is helpful and that you'll consider helping ACHA in this way.
  6. Good idea. I actually have been working on a medical jargon translation table as well.
  7. 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.
  8. 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
  9. Dear message board partipants, Thank you for our ongoing usage of the ACHA Message Board! On Thursday, September 28, 2006 this message board will be temporarily unavailable as we launch our new, improved website. Please check back to www.achaheart.org on Thursday evening (eastern standard time) to use the message board and see our exciting new website! The attendees of the National Conference earlier this month got a sneak peek at the new web design and were quite pleased. We hope that you'll like it equally well. Note that you will have to re-register on the site to be able to post to the message board, but this will also give you access to the online ACHA Personal Health Passport and the Clinic Directory database.
  10. The ACHA Nominating Committee is currently recruiting candidates for consideration for the ACHA Board of Directors. The ACHA Board will be holding its annual election on June 25, 2006. We are currently seeking candidates with experience on nonprofit boards or equivalent professional experience. Fundraising is an additional responsibility of a Board Member. Board service requires at least 12 hours a month available for ACHA work, attendance at a monthly phone meeting, and attendance at a yearly Board retreat. ACHA encourages board participation from individuals with CHD, their family members, and all those passionately committed to the heart defect community. If you are interested please e-mail Nominating Committee Chair Anthony Pugliese at anthonyp@achaheart.org or call the ACHA office at 205-849-1260. Deadline for contacting Anthony or the office is April 23, 2006.
  11. Interested in telling your story but don’t know where to start? ACHA has writers willing to interview you and help write you story for publication in the ACHA quarterly newsletter, Heart Matters. We are interested in articles from adults with CHD, spouses, siblings, parents and other family members. Please contact us at newsletter@achaheart.org for more information.
  12. Melinda, it's scheduled for lunch. Hope to see you there! Jim
  13. Janelle, sounds great to me! Hope to see the other Norcal folk there. Jim
  14. The links to the message board from the main ACHA site are now working properly. Thanks, Andrew, for fixing the link!
  15. All, The ACHA Message Board is back up and operational. The new URL is http://www.achaheart.org/boards We needed to update the message board software on our server because of a known vulnerability in the version that we were running that could allow someone to obtain users' passwords. We highly recommend that everyone change their password as soon as possible to avoid any problems. If you encounter any problems logging in, please send me an email at jimw@achaheart.org. Thanks, everyone, for your patience. With the holidays and vacations, it took more time that usual to fix the problem. Regards, Jim ACHA Message Board Moderator
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