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  2. The Pros and Cons of Warfarin versus New Oral Anticoagulants (NOAC's) Wednesday, April 7, 2021, 7 p.m. – 8 p.m. EDT Presenter: David Gregg, MD About the Webinar Some adult patients with congenital heart disease (CHD) take anticoagulants or blood thinners. Do you know why you might need this type of medicine? Do you want to learn more about warfarin and NOACs? Have you wondered how these drugs work and what drug interactions they might have? This webinar will explore what we know about the newer anticoagulants in CHD. It will also discuss the difference in anticoagulants and antipla
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    Presenter: Marlon Rosenbaum, MD There are many ways to image the heart. Techniques include echocardiography, cardiac CT scan, MRI and catheterization. Did you know that each of these uses different methods to get a picture of your heart? Your adult congenital heart disease (ACHD) doctor will decide on which study you need based on the questions he or she wants answered. If you want to know more about the role of these imaging tests in ACHD, the reason each is used, and what the radiation exposure risk is, you won’t want to miss this webinar. CLICK HERE T
  5. Prevalence of Cognitive Impairment in CHD Survivors: A Pilot Study Wednesday, March 24, 2021, 7 p.m. – 8 p.m. EDT Presenter: Carla Rodriquez-Monserrate, MD About the Webinar Did you know that children with congenital heart disease (CHD) commonly have neurodevelopmental and psychosocial impairments? The areas most often affected are memory, attention, behavioral control, and executive function. In adult CHD patients, studies are limited; however, they do suggest similar findings. This puts adults with CHD at increased risk for cognitive impairment and dementia. Yet, no studies have
  6. The 'gothic' arch is a narrowing at the transverse aortic arch and may lead to high BP. Does anyone have a gothic arch or know how common this is? Has anyone had a sternotomy or thoracotomy for a patch repair (or other intervention) on a gothic arch?
  7. Last night's webinar is now available for viewing! Click here to listen, watch and learn more about ACHA's ACHD Clinic Directory and ACHD Accreditation Program through the lens of ACHA Peer Mentors, Emily W. and Ryan S.
  8. It's not too late to register for ACHA's Wellness Wednesday presentation tonight, "Ask A Peer Mentor: Clinic Directory, Accreditation and Empowerment". You will find out how the ACHD Clinic Directory and ACHA ACHD Accreditation benefit you, the patient. Don't miss out on learning how empowering these tools are. Our panelists are ACHA Peer Mentors, Emily W and Ryan S, along with ACHA Accreditation Manager, Misty Sharpe and ACHA Senior Education Manager, Paula Miller. Register now at www.achaheart.org/AWW. askapeermentordirectoryaccreditationFlyer.pdf
  9. The ACHA Michigan Regional Conference is a dynamic partnership between the Adult Congenital Heart Association and the Congenital Heart Center at Spectrum Health Helen DeVos Children's Hospital. We invite patients, family members, friends and healthcare professionals to learn about specialized lifelong care for adults with congenital heart disease (ACHD) and to connect with the ACHD community. You will have the opportunity to listen and learn from experts in adult congenital heart disease. Please join us on Saturday, October 2, 2021. Registration begins at 8:00 a.m. and the program is fro
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    Presenter: David Gregg, MD Some adult patients with congenital heart disease (CHD) take anticoagulants or blood thinners. Do you know why you might need this type of medicine? Do you want to learn more about warfarin and new oral anticoagulants (NOACs)? Have you wondered how these drugs work and what drug interactions they might have? This webinar will explore what we know about the newer anticoagulants in CHD. It will also discuss the difference in anticoagulants and antiplatelet drugs. CLICK HERE TO REGISTER Medical providers, click
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    Presenter: Christine Blackmore Join us for an hour-long virtual introductory session on the principles of wellness. This session will include a short presentation on the history and benefits of mindfulness, followed by several practices, including guided meditation and ending with a short Q&A. CLICK HERE TO REGISTER
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    Presenter: Carla P. Rodriguez-Monserrate, MD Did you know that children with congenital heart disease (CHD) commonly have neurodevelopmental and psychosocial impairments? The areas most often affected are memory, attention, behavioral control, and executive function. In adult CHD patients, studies are limited; however, they do suggest similar findings. This puts adults with CHD at increased risk for cognitive impairment and dementia. Yet, no studies have routinely looked at this. This webinar will review an ACHA-funded pilot study of adult CHD patients between 30 and 65 who were coming in
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    Presenters: ACHA Peer Mentors Emily W. and Ryan S. Did you know that ACHA has resources and programs that help to empower you in your care? If you want to learn more, join ACHA Peer Mentors Emily W. and Ryan S. as they answer your questions about our updated ACHD Clinic Directory. They will also talk about how ACHA ACHD Accreditation benefits you as a patient. CLICK HERE TO REGISTER Medical providers, click here for a flyer to use at your ACHD program!
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    Presenter: Tabitha Moe, MD Have you been told you have either scimitar syndrome or Shone complex? Each is uniquely rare and complex and requires care at an Adult Congenital Heart Disease (ACHD) center. This webinar will discuss diagnosis, anatomy, and long-term issues with each. You don’t want to miss it. CLICK HERE TO REGISTER Medical providers, click here for a flyer to use at your ACHD program!
  15. My name is Heidi and I am 52 years old. I just found out I have CHD because I drove myself to the emergency room thinking I pulled a muscle. 72 hours later I had an ablation, an ICD, and six pill prescriptions. The doctors stood in a row above my bed in the CICU and told me my right ventricle is not shaped correctly and that I was born that way. Two weeks ago I was running 8 miles, two years ago I was participating in an Olympic Triathlon. As a child I was always sick. Obviously my parents never knew it was because of my heart. When I go to the Heart Failure clinic I am given
  16. Greetings!! I am NEW to the Community and am wondering who else out there had Dr. Kirklin or Dr. Brunswick as their surgeons. I had a Blalock Taussig Shunt in 1982, then Tetralogoy of Fallot Repair in 1983. Thanks so much~ Marisa1981
  17. Psychosocial Effects of Physical Isolation in Response to a Pandemic Wednesday, February 24, 2021, 7 p.m. – 8 p.m. EST Presenters: Ali Zaidi, MD, Meredith Kalbacker, LCSW and Alex Weisman Moderator: Marissa Mendoza (ACHA Peer Mentor) About the Webinar: Has the isolation caused by the COVID-19 pandemic caused you to feel out of sorts, sad and lonely? Have the changes in your daily life and the fear of what will happen caused you emotional stress? If so, you will want to attend this webinar. It will be a unique and enlightening conversation. The panelists inc
  18. Hi Carlie! Sorry nobody has replied to this yet. I actually had an atrioventricular septal defect and I was born in the early 70s. It wasn't caught prenatal, but they did do surgery when I was about 6 months old. I then had to have a couple more surgeries as I grew and the wall they basically built had to be expanded. I would have to look at my surgical reports to see how they did that back then. I'm sure it's a little different than how they would do it now (they actually had to re-build my wall a little over 10 years ago, and that was still via an open heart surgery). I am so sor
  19. Hi, My sister was born with a ventricular septal defect in the early 1960s in the Twin Cities (Minneapolis/St. Paul). I am trying to learn what type of options she would have had at the time, and as a child. She never had heart surgery, and died at the age of 40. I am trying to learn if she could have gotten help at some point, and what that would have been. She mentioned she might have been a candidate for a heart & lung transplant as an adult, but never had serious enough symptoms (so she said) to warrant getting a transplant. I do not have her medical records; I'm just starti
  20. I’m new too. I wanted to speak to others about our shared condition...
  21. Hi. I have all this. Is there anyone out there with the same? I feel very alone.
  22. I recently found out about this program and I'm wondering what benifits this program has to offer and how I can become a part of it.
  23. ACHD Follow-Up: I Don’t Need That, I’m Fixed Wednesday, August 29, 2020, 7 p.m. – 8 p.m. EDT Presenter: George Lui, MD About the Webinar Have you ever been told that you are “cured” or “fixed”? Do you see your ACHD cardiologist regularly? Where you ever out of care? Do you know the common residual defects related to your congenital heart disease (CHD)? Do you know the different types of treatment? If you want to learn more and find out why staying in care is so important, you will want to attend this webinar. Dr. George Lui will review common residual defects and abnormalities afte
  24. Hello my name is Paula and I was recommended to join this group by my Cardiologist. I was born with a hole in my heart and when I was 35 I had to have my heart valve replaced again. During my recovery after surgery I had a stroke and seizures that left me in a coma for a few days. I had a hard time recovering from everything, but eventually I became my self again. When I hit 40 I was diagnosed with breast cancer. I have have completed treatments and now I am just on hormone therapy. Many people have wondered if my heart condition lead to the cancer and I wonder if anyone else has had the
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