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  3. Has anyone taken notice that congenital heart disease has no clinical clarity to offer it a chronic or severe listing to be included amongst places such as the social security administration to ensure clarity as to why exclusive healthcare is needed for patients. 10 months after the signing into law of the Congenital Heart Futures Reauthorization Act no money has been placed into the bank to allow research or updating the existing database of patients and potential patients. As much as had been done to raise awareness of congenital heart disease on a national level places such as Health and Human services and the Social Security Administration are still unaware that congenital heart disease is a chronic and/or severe heart disease that needs to be included into its listings accordingly to further assist patients seeking public assistance to ensure healthcare for pre-existing conditions. Once given opportunity to saturate the public sector will the work done to ensure patients with congenital heart disease receive the medical attention needed to ensure quality lifetime progressive treatment. As a patient that is seeking a cardiovascular disability claim with the inclusion of mental health it is important that agencies such as the Social security Administration and Health and human services are aware that not only as a patient am i continually receiving treatments after years of not receiving treatments due to lack of information towards congenital heart disease i will need treatments to span a life time. Lifetime treatments ensure progress towards treatment practices and brings relevance to the individual transitional lifestyle choices from childhood, adolescence and adult congenital heart disease patients. Right now not much is known about safe lifestyle practices adult congenital heart disease patients. Thats why organizations such as the Adult congenital heart Association make sure its team of specialist include the importance of regular doctors visits where you discuss including talking to a nutritionist to be prescribed a heart-healthy diet as well as an exercise routine to ensure you are including preventive heart disease measures in your lifestyle. Despite the lack of knowledge and insight towards adult congenital heart disease living there are astronomical differences from pediatric congenital heart disease living to where adults primarily are suggested to live an active lifestyle even though activities such as pregnancy and certain sports will never be suggested an active well-balanced lifestyle is considered to be normal for an adult congenital heart disease patient. We are just asking for some assistance with the $3,500 sonography exam 2 to 3 times a year or the $3,000 stress test once every 3 years or the $3,500 echocardiogram 4 times a year or the $2,000 a month atrial arrhythmia mobile monitor? These are things that once the public sector is willing to have more of an understanding of when dealing with adult congenital heart disease living then will inclusions of progressive and innovative healthcare be offered for all congenital heart disease patients that will offer lifetime benefits.
  4. As a person living with a congenital heart disease life already has its twists and turns that may come my way which has landed me amongst some of the harshest living conditions deplorable. The Institutional system of this nation has some of the most uncompromising healthcare approaches known. As a recent participant I witnessed a very high level of resistance to integrating a heart healthy diet into the institutional system to ensure the most productive practice of a diet and lifestyle to promote heart health. Institutional detention facilities, prisons as well as the public school system abide by one of the most relaxed and indeserving dietary standards that barely meets the needs of daily dietary consumption totals to promote a healthy active lifestyle. This assumption is being used to make a complaint against the dietary meat supplement used as a substitute for ground beef and beef products. One of the main ingredients of this product is sodium which is used for taste and texture. The product in question is made amongst a low grade meat packing house located in Auburndale Florida. The product inquestion is made of beef by-product as well as soy texture protein base to ensure taste and texture during storage and use of the product. It has been proven that for persons with known heart diseases and sufferable symptoms associated with a heart disease products such as soy and sodium are never wise dietarty substitutions to approach when considering a healthy and balanced lifestyle. My complaint comes in the fact that i personally have witnessed the lack of a heart healthy diet implementation amongst the institutional level. While witnessing the lack of implementation i also noticed the refusal to allow a substitutional inclusion which for the good nature of the request could be a low-sodium diet which allows a person to stay away from products that are processed as well as having a high sodium content which the institutional system has access to prescribe to those persons that have issues with sodium comsumption. I am not saying that a low-sodium diet is the direct substitutional approach to a heart-healthy diet, i am suggesting that to futher bring an understanding toward the need to prescribe persons with heart diseases to a low-sodium diet if that is all that is offered to include dietary relevance to assume productive living. Bad enough as adults we are running into grey areas inregards to living with a congenital heart disease that the topic of an active living diet to become included amongst overall treatment allowances should be entertaining rather than a burden when making daily dietary inclusions.
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  8. Please take a moment to read through the following registration terms and rules. 1) The Online Community is a benefit of ACHA membership. Individuals who are not currently ACHA members will not be approved to access the Online Community. To register for ACHA membership, please click here. 2) The Online Community is a safe, moderated space for ACHA members to discuss CHD-related topics. As such, we ask that you do not take screenshots or share posts outside of the Online Community in order to protect the privacy of all members. You also agree, through your use of this service, to abide by all Online Community policies and procedures. You may reference these policies at any time by clicking on the Forum Policies link located within the Online Community. 3) The messages posted in the Online Community express the views of the author of the message, not necessarily the views of ACHA. As an organization, ACHA is institutionally neutral and does not endorse or recommend specific programs or providers. Links to resources available on the ACHA website are included throughout the Online Community. All educational resources can be found under the Your Heart tab of the website. 4) Talking to someone else who has had a similar experience about your health and quality of care, in addition to obtaining recommendations from other patients or family members, can be helpful. However, each person and situation is different therefore we ask that any medically-related questions also be discussed with your ACHD care team. If you need assistance with navigating care or would like to talk with one of ACHA's trained Heart to Heart Peer Support Ambassadors, please click here to learn more and complete the Support Request Form. 5) By registering, you agree to watch this brief tutorial on the Online Community, which reviews features, how to navigate the site and how to set up your profile.
  9. Very excited as the days grow closer till the Atlanta Regional Conference April 13, 2019. This will be my very first conference so the anxiety level is through the roof right now. I pray I get to see some of the faces from the forum present during the conference.

  10. Read the latest entry to the HeartTalk blog by clicking here. About the Author: Melissa Hartman is an ACHA Ambassador. In her words: “You should not have stayed away so long! You need surgery, and I don’t want you to wait.” These were shocking words from my ACHD cardiologist. Like most adults, I had been living life without properly caring for my congenital heart defect, tetrology of Fallot. I was the lucky one who was the first TOF repair at Emory in Atlanta in 1972 at the age of four. With only a few interventions between four and 40, I figured I was set for life. When my cardiologist told me I needed another surgery, I was stunned. Once again, I was lucky. I was referred to a wonderful surgeon who was able to save my pulmonary valve and repair my right ventricular outflow tract. As I recovered and realized how truly fortunate I am, I decided I needed to help educate everyone about the importance of lifelong care with an adult congenital specialist.
  11. Read the latest entry to the HeartTalk blog by clicking here. About the Author: Robert Grabel was born with tetralogy of Fallot, had open heart surgery when he was 10 and recently had valve replacement surgery. He is married with one daughter and one dog. Robert works in the nonprofit field where he helps organizations create endurance event fundraisers. He considers himself lucky to blend his passion for work in the charitable sector with his love of biking and long distance running—to date he has run 14 marathons and more than 20 half-marathons, as well as long distance cycling events. He was introduced to ACHA by his cardiologist and is eager to help and encourage other CHD patients to embrace life to the fullest.
  12. MSharpe_TN

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