I usually try to stay up to date on these things, but I clearly dropped the ball on this one! At my last cardiology appointment, my ACHD cardiologist handed me a copy of the updated care guidelines for management of patients with Tetralogy of Fallot (TOF). This updated guideline is part of the 2018 AHA/ACC Guideline for the Management of Adults with Congenital Heart Disease; A Report of the American Cardiology/ American Heart Association Task Force on Clinical Practice Guidelines. The 2018 guideline is a “full revision” of the 2008 ACC/AHA Guidelines for the Management of Adults with Congenital Heart Disease
These guidelines make me really excited for a few reasons; one reason is they actually include a recommendation for adults with CHD to participate in moderate activity! The 2008 Guidelines did not have this much information on activity or exercise. “Most patients with CHD can safely participate in regular moderate physical activity. ” (p 716) According to the task force, “Physical activity is widely recognized as being beneficial to the physical and mental health of those who participate….Studies describe the beneficial effects and safety of exercise programs for patients across the spectrum of CHD. Activity recommendations should be individualized and based on the patient’s clinical status and their interests. ” (p 716) For the best way for you to get your individualized recommendations, see the post on Recommendation form posted 12/8/2020, The guidelines go on to say that “Emphasizing the importance of daily physical activity according to functional capacity and decreasing sedentary behavior as appropriate for patient’s clinical status is essential…” (p 718)
So the next logical question for the CHD patient is ,”What do they mean by clinical status?” It is not just your defect diagnosis. That is the second thing that is exciting about the guidelines for patients; defects are classified by anatomical and physiological characteristics, and not just their name. My friend Teresa, who is an adult CHD nurse gave me the best explanation of defects. She compares defects to apples. There could be a bowl of apples on the table that represent one defect, like TOF. They are all apples, but some are Fuji, others are Granny Smith, Red Delicious or Golden Delicious. They all taste different. Thus, people with TOF for example, cannot all be treated alike. Everyone presents clinically differently and cannot be treated the exact same way. The latest guidelines for care take into account these anatomic and physiologic difference within defects. The best thing you can do for yourself is to educate yourself about your specific problems. Your cardiologist will probably be happy to explain things to you. Plus, there are so many resources out there!
Check out the guideline here! It is easy to find your specific defect so you can learn the latest care guidelines and be able to discuss them with your cardiologist.