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Running head: IMPORTANCE Of FOLLOW UP CARE FOR SURVIVORS OFSURGICAL REPAIR FOR TETRALOGY OF FALLOT 1 Importance of follow up care for survivors of surgical repair for tetraolgy of Fallot Carol Zinn Ferris State University English 321 2 IMPORTANCE OF FOLLOW UP CARE FOR SURVIVORS OF SURGICAL REPAIR FOR TETRALOGY OF FALLOT Abstract The purpose of this paper is to stress the importance of ongoing care in persons that have had surgical correction of tetralogy of Fallot. I will also discuss some of the aspects of the disease as well as the surgical interventions involved to support this proposal. 3 IMPORTANCE OF FOLLOW UP CARE FOR SURVIVORS OF SURGICAL REPAIR FOR TETRALOGY OF FALLOT Overview of tetraology of Fallot Congenital heart disease is rare, but is one of the most common forms of congenital diseases. Congenital heart defects are broken down into cyanotic and ascyanotic. Tetraology of Fallot is the most common of the cyanotic heart defects. Cyanotic means that there is a decrease in oxygenated blood that gets to the body. Tetraolgy of Fallot is a congenital or abnormal structure of the heart that is present at birth. (New York Times 2012). Tetralogy of Fallot consists of four defects: first, there is a large hole between the ventricles which leads to mixing of oxygenated and unoxygenated blood. Second, the Aorta is located centrally over the defect of hole between the ventricles instead of over the left ventricle. Third, there is a “narrowing of the pulmonary outflow tract which is where the valve and artery connect the heart with the lungs”, according to Helen DeVos children’s hospital (2009). The fourth defect is that the wall of the right ventricle becomes larger as a compensatory mechanism as it has to pump harder against the narrowing in the pulmonary artery. Surgical intervention is the preferred method of treatment as most of these children would not survive past early adulthood without it. Surgical intervention started in the 1950’s. Institutions used to start repair in later childhood as a two- step repair. With advances in technology, surgical intervention is preformed before age one, and is done as a total repair. The surgical repair consists of closing the ventricular septal defect or, hole, with a patch. Next the pulmonary valve is opened and a patch may be placed to open up the pulmonary artery. If there is thickened tissue that is causing obstruction between the right ventricle and pulmonary outflow tract, it is cut away. 4 IMPORTANCE OF FOLLOW UP CARE FOR SURVIVORS OF SURGICAL REPAIR FOR TETRALOGY OF FALLOT The success rate of surgery for tetralogy of Fallot is good with the improvements in technology and skill of surgeons. The number of adult survivors of tetralogy of Fallot continues to increase. Many survivors of surgical repair of tetralogy may fell they are cured as they are often without symptoms. This is a dangerous assumption. This can lead to improper follow up care and adverse consequences. The major long term complication after corrective surgery for tetralogy of Fallot is pulmonary valve insufficiency. Due to the nature of the surgical correction to open up the pulmonary valve it may become leaky over time. This may not be a problem for many years. The individual might not have any adverse effects until there is damage to the right ventricle. The right ventricle compensates for the increased back follow pressure by becoming enlarged with the extra work load. Over time it may become stiff and lead to complications such as arrhythmias, right sided heart failure, and even death. The solution is usually replacement of the pulmonary valve. There is still controversy over timing of the surgery as complications can arise from the valve replacement. A cardiac MRI is often used as a tool to determine proper timing of valve replacement. There are two options for valve replacement, mechanical and prosthetic valves. Mechanical valves require one to be on a blood thinner such as wafarin. This can lead to bleeding problems which is a significant concern with the young adult who might be involved in active sports or become pregnant. The prosthetic valve is made of biological material, usually from pigs, but they usually do not last more than ten years. Hopefully, with technical advancements, valve replacements will be done in the cath lab. Many survivors of surgical correction for tetralogy might not get the proper follow up care they need. Many primary care physicians are not well informed about physical recommendations and taking care of the repaired heart, as congenital heart defects are rare, and the rate of survival and age of survival have only recently increased. It is important that the cardiologists and primary care physician 5 IMPORTANCE OF FOLLOW UP CARE FOR SURVIVORS OF SURGICAL REPAIR FOR TETRALOGY OF FALLOT have good communication. It is also very important for the caregiver of the child who has had repair be knowledgeable about the extent of surgical repair and the severity of the defects as they differ between individuals. Physical activity is often unnecessarily restricted. This can lead to the individual being obese, feeling inadequate, different, or odd. It is also important for the individual who has had surgical correction for tetralogy to be physically active to maintain a healthy heart and reduce risk of stroke, hypertension, coronary artery disease, high cholesterol, and diabetes. Proper nutrition is important as well to maintain a healthy body and heart. Most children and adolescents living after repair of tetralogy have few activity restrictions unless they have some residual complications. According to Jackson, (p.5) in a recent survey, “Almost 36% of parents incorrectly identified the need for exercise restriction for their child as determined by a cardiologist, and nearly 39% of parents imposed excessive and unnecessary exercise restriction on their child.” Other complications that may arise later in life after surgical correction of tetralogy are: arrhythmias that occur as the result of scar tissue from the surgical correction, heart infections like endocarditis, which is an infection of the lining of one’s heart, and stroke which can come about from arrhythmias or an abnormal connection in the heart. Right ventricular failure from pulmonary valve regurgitation can lead to left ventricular failure, which can result in lethal ventricular arrhythmias, coronary artery disease, and may cause problems with lungs as well. Some of these complications may require medicine or surgical correction. It is very important for surgical survivors of tetralogy have regular visits to their primary care physicians and their cardiologist for the rest of their lives. Ongoing tests to confirm proper functioning of the heart include: electrocardiogram to look at the electrical activity of the heart, chest x-rays to look at the image of the heart and lungs, echocardiogram to look at images and function of heart, and MRI, cardiac magnetic resonance imaging, is used to look at heart images using a magnetic field. 6 IMPORTANCE OF FOLLOW UP CARE FOR SURVIVORS OF SURGICAL REPAIR FOR TETRALOGY OF FALLOT Exercise stress test may be used to measure the heart’s response to exercise. Cardiac catheterization may be necessary to check blood flow and pressure in the heart. It is important for children as they grow into young adults to be aware of the kind of defects they have and the surgical intervention that was specific to their defects. They should be aware of defects that still exist, care that may still be needed, and signs and symptoms of complications. Transitioning from a pediatric cardiologist to an adult cardiologist is an important step. One must make sure the cardiologist is knowledgeable in the specific needs of congenital heart disease and repairs related to one’s specific condition. A plan should be in place during the teen years to prepare them for taking over their own care. Importance of health insurance, education, and employment should be discussed. Another topic that may need to be addressed is genetic counseling, as many congenital heart defects have a genetic component. Pregnancy counseling and prenatal care are very important. Women become pregnant after surgical repair of tetralogy need to be closely monitored by a cardiologist for possible complications. It is also important for the teen to be knowledgeable about making healthy life style choices such as proper nutrition and importance of regular exercise. The importance of ongoing, vigilant care is paramount to the quantity and quality of life for survivors of surgical repair for tetrology of Fallot. Tetralogy is a complex heart condition with varying degrees of severity. Surgical repair can differ between individuals greatly; therefore, it is important to know what complications may arise and possible signs and symptoms to be aware of. Irreversible damage may have already occurred when the individual first experiences signs. Tetralogy of Fallot is a lifelong condition requiring lifelong care by a competent cardiologist. 7 IMPORTANCE OF FOLLOW UP CARE FOR SURVIVORS OF SURGICAL REPAIR FOR TETRALOGY OF FALLOT References Allen, P.J., Caplan, R. (July-August2011). Physical activity recommendations for adolescents with repaired tetralogy of Fallot: review of literature and guidelines for practitioners. Pediatric Nursing 1-8.Retrieved from Academic OneFile on February 2012. Helen DeVos Children’s Hospital. (2009, December 21). Tetralogy of Fallot. Retrieved from:http://www.helendevosc 0015 on February 2012. Fox, D., Ganesh, P., & Devendre, B. (2010 November).When “blue babies” grow up: What you need to know about tetralogy of Fallot. Cleveland Clinic Journal of Medicine, 77 (11), 821828.doi:10.3949/ccjm.77a.09172 Mayoclinic Staff. MayoClinic, .com. (2011, May 13). Congenital heart disease in adults. Retrieved from: http://www.mayoclinic.com/health/congenital-heartdisease/DSO1140/METHOD=print, on February 2012. The New York Times. (2012, February 27 Monday).Tetralogy of Fallot refers to a type of congenital birth defect. Congenital means present at birth. Retrieved from:http://health.nytimes.com/health/guides/disease/tetralogy-of-fallot/overview.htmlon February 2012. U.S. Department of .Health and Human Services, National Heart Lung and Blood Institute. (n.d.). What are the Signs and Symptoms of Tetralogy of Fallot? Retrieved from: http://www.nhlbi.nih.gov/health/health-topics/topecs/tof/signs.html on February 2012. 8 IMPORTANCE OF FOLLOW UP CARE FOR SURVIVORS OF SURGICAL REPAIR FOR TETRALOGY OF FALLOT