{"id":25183,"date":"2019-07-02T08:35:30","date_gmt":"2019-07-02T14:35:30","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=25183"},"modified":"2024-07-17T09:22:33","modified_gmt":"2024-07-17T15:22:33","slug":"new-book-captures-the-manifestations-of-adult-congenital-heart-disease","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/new-book-captures-the-manifestations-of-adult-congenital-heart-disease\/","title":{"rendered":"New book captures the manifestations of adult congenital heart disease"},"content":{"rendered":"
<\/div>
\"women
Stephania Bunka on Colorado\u2019s Stanley Mountain this winter. The engineer-turned-author has continued to be, as she put it, \u201csuper-active\u201d despite adult congenital heart disease. (Linda Wolgemuth photo; courtesy Stephania Bunka)<\/figcaption><\/figure>\n

When Stephania Bunka couldn\u2019t find the perfect book about adult congenital heart disease, she quit her engineering job to write one herself \u2013 with a little help from her doctor at UCHealth.<\/p>\n

If the old adage \u201cwrite what you know\u201d holds water, Bunka is poised for success. She was born blue in Sudbury, Ontario, and it had much more to do with oxygenation than with her mood at the time. She had a congenital heart disease called tetralogy of Fallot, one of many types of heart problems that surprisingly many babies are born with \u2013 roughly one in 100 births come with a heart defect, says Dr. Joseph Kay<\/a>, the doctor who\u2019s coauthoring the book on congenital heart disease with Bunka.<\/p>\n

\u201cIt\u2019s the most common birth defect,\u201d he said, with about 40,000 babies added<\/a> to the rolls each year. About two million people in the United States have congenital heart disease, half of whom are now adults. Perhaps 20 to 30% of those with adult congenital heart disease (ACHD) are getting the specialist care they need, Kay adds.<\/p>\n

Kay is a prominent example of such a specialist. He is director of Colorado\u2019s Adult and Teen Congenital Heart (CATCH<\/a>) program, a collaboration between the Adult Congenital Heart Disease Clinic<\/a> at UCHealth University of Colorado Hospital at the Anschutz Medical Campus and the congenital heart disease program at Children\u2019s Hospital Colorado. For 15 years now, the CU School of Medicine cardiologist has kept an eye on hundreds of patients who, thanks to miraculous heart surgeries on babies and infants, lived on into adulthood and old age.<\/p>\n

Bunka, 46, is among them. Tetralogy of Fallot involves four heart problems \u2013 a narrowing of the exit from the right ventricle (which pumps blood to the lungs); a hole in the wall between the right and left ventricles; a thickening of the muscle in the right ventricle; and what\u2019s called an overriding aorta, which lets blood from both ventricles into the aorta (the left ventricle alone normally feeds the aorta, the heart\u2019s exit door for oxygen-rich blood to the body). Bunka had open-heart surgery in Toronto when she was two years old and has gone on to live an active life \u2013 hiking (she has climbed Longs Peak twice now), biking (road and, more recently, mountain), and running half marathons and the Bolder Boulder. But she had, and always will have, adult congenital heart disease.<\/p>\n

Fixes need fixes<\/strong><\/h3>\n
\"profile
Bunka aims to create a layman\u2019s guide replete with human stories related to ACHD and its treatment. (courtesy Stephania Bunka)<\/figcaption><\/figure>\n

Why, if doctors fixed Bunka\u2019s heart, does she still have heart disease, congenital or otherwise? Adult congenital heart disease takes many forms \u2013 though most commonly manifests in heart rhythm problems and heart failure symptoms, Kay says. But fixes \u2013 be they automotive repairs or intricate heart surgeries \u2013 are not forever.<\/p>\n

Bunka became a patient of Kay\u2019s shortly after her arrival in Colorado in 2003. The trained engineer had come to work as a turbine generator maintenance specialist with Xcel Energy. For about a decade, the appointments with Kay were routine. Then it became clear that heart trouble was brewing.<\/p>\n

The tetralogy of Fallot surgery done back in 1974 left Bunka\u2019s pulmonary valve \u2013 which, when healthy, opens and closes with each heartbeat, sending low-oxygen blood from the right ventricle to the lungs \u2013 open. That caused the right ventricle to bloat like a water balloon. In Bunka\u2019s case, her heart ended up nearly twice its normal size, Kay says. To repair the old repair, UCHealth and CU School of Medicine cardiac surgeon Dr. David Campbell installed a new pulmonary valve in an open-heart surgery, and six weeks later, his cardiac electrophysiologist colleague Dr. Duy Nguyen added an implantable cardioverter defibrillator (ICD<\/a>) to quell heart-rhythm problems that had cropped up.<\/p>\n

Bunka transferred to a desk job with Xcel \u2013 given the potential electrical issues with her heart, being off in remote locations in the field was deemed too risky \u2013 and resumed what she described as a \u201csuper-active\u201d life. But a seed had been planted, and in October 2018, she left Xcel to tour Central America and then to pursue her book idea.<\/p>\n

\"profile
Adult congenital heart disease specialist Dr. Joseph Kay is both Bunka\u2019s doctor and coauthor of her book on congenital heart disease.<\/figcaption><\/figure>\n

She\u2019s thousands of words and dozens of interviews into the project now. It involves a combination of layperson-friendly medical descriptions and, most importantly to Bunka, interviews with a dozen or so adult congenital heart disease patients from Colorado and elsewhere. Kay is contributing expertise as well as reaching out to patients for potential interviews. Bunka aims to write about the spectrum of adult congenital heart disease defects, but also cover the socioeconomic bases, she says.<\/p>\n

\u201cI want to capture all the different manifestations of adult congenital heart disease, and among people in different life situations,\u201d Bunka said.<\/p>\n

Shelf life<\/strong><\/h3>\n

On the medical side, she\u2019ll explain everything from what sorts of medical testing is done and why, what treatment options are available, how those options have changed over time, and where medical science and technology looks to be headed with respect to the disease she knows so well. Technological advancement stands to benefit Bunka one day, too: her prosthetic heart valve will wear out one day; its replacement could be delivered via catheter rather than an open procedure.<\/p>\n

The book\u2019s overriding message, she says, is that adult congenital heart disease repairs have a shelf life.<\/p>\n

\u201cA lot of ACHD patients who were operated on as infants were sent home and told they were fixed and fine for life,\u201d Bunka said. \u201cBut they in fact need lifelong follow-up by a congenital heart specialist. We want to take every opportunity to get that message out there.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

When Stephania Bunka couldn\u2019t find the perfect book about adult congenital heart disease, she quit her engineering job to write one herself \u2013 with a little help from her doctor at UCHealth. If the old adage \u201cwrite what you know\u201d holds water, Bunka is poised for success. She was born blue in Sudbury, Ontario, and […]<\/p>\n","protected":false},"author":23,"featured_media":25185,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[8],"tags":[84,3512,82,3300,9167],"class_list":["post-25183","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-cardiology","tag-heart-and-vascular-care-cardiovascular","tag-heart-and-vascular-care-cardiology","tag-heart-surgery-treatments","tag-specialized-services"],"acf":[],"yoast_head":"\nPatient and doc create book on congenital heart disease - 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