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Inside this Issue
Patient Advisory Committee
Announcements
The Physician as Patient
Joseph K. Perloff, M.D.
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n December, three days after returning from travels to Greece, Russia, Norway, the American Heart Association Meeting in Florida, and the Texas Heart Institute in Houston, Dr. Perloff suffered a sudden heart attack that quickly catapulted him from the role of physician to patient. Following a dramatic 3am trip to the UCLA emergency room, he underwent urgent six-vessel coronary bypass surgery under the skilled hands of Dr. Hillel Laks. Now, many months later, Dr. Perloff is fully recovered and very mindful of the realities of being a patient with cardiac disease. He and his wife Marjorie recorded their experiences from the patient and family perspective, both good and not so good, in a monograph “Coronary Artery Bypass: A User’s Manual” that was published in the July issue of the American Journal of Cardiology. His vivid personal reflections have served as a lesson in empathy to each of us who look after cardiac surgery patients. We are grateful to have Dr. Perloff back at UCLA in the role of teacher and investigator. He teaches students and post-doctoral trainees in the weekly Wednesday ACHD clinic and continues to be an inspiration to us all.
Announcements .....................
In Memoriam ........................
Highlighted Faculty ...............
Fund Development ................
Feature Article .......................
ACHA Conference.................
Websites, Information, Resources ...............................
Fundraising Options..............
Summer/Fall 2004
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he Ahmanson-UCLA Congenital Heart Disease Center has a relatively new group of people assisting them — the Patient Advisory Committee (PAC). The PAC was formed to assist the Center in identifying programmatic needs for patients and families and in developing patient support programs and resources. The PAC is composed of ACHDC patients Marty Bieti, Kay Deeney, Tracy Livecchi (Chair) and Beth Kissinger (Co-Chair) as well as ACHDC staff members Mary Canobbio, Linda Houser and Pam Miner. This past year PAC members helped organize the CHD Awareness Day, assisted with developing the ACHDC website and newsletter, and participated in the Camp del Corazon Family Weekend. One of our members, Marty Bieti was a speaker on a panel addressing the issues of growing up with Congenital Heart Disease.
We have some exciting projects for this next year: ■ Continue updating and working on the ACHDC Website: http://www.achdc.med.ucla.edu ■ Planning and hosting a social mixer to give patients and their families an opportunity to meet and to get to know each other in a casual setting ■ Teen/Family mentoring program ■ Coordinating with the Adult Congenital Heart Association (ACHA) to put on a regional meeting But our small group of people can’t accomplish all of this on our own — we need YOU! We need your suggestions as well as volunteers to be a mentor. If you’re interested, please contact Linda Houser or Pam Miner at (310) 794- or email them at achdc@mednet.ucla.edu.
Award of Extraordinary Merit Our own Dr. Joseph K. Perloff has been chosen to receive the UCLA Medical Alumni Association’s Award of Extraordinary Merit for the year 2004. This award recognizes individuals for their contributions over a span of many years that have been of unusual great benefit to the UCLA School of Medicine either directly or by enhancing the reputation of the School through major advances in the medical field. He will receive the award at the 2004 Medical Alumni and Aesculapians Awards Banquet on Friday, October 22. Congratulations Dr. Perloff.
Samuel Kaplan, M.D. 1922-
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n January of this year, we lost one of our most treasured leaders in the field of adult congenital heart disease. Samuel Kaplan was internationally recognized as a pioneer in congenital heart disease, and spent the latter part of his distinguished career as a pediatric cardiologist focusing on adult survivors. He joined the ACHD program at UCLA in 1987 and was an integral part of our ACHD clinic for over 10 years. During his UCLA tenure, he was active in CHD research, as well as in the training of younger generations of pediatric and ACHDC cardiologists. Dr. Kaplan was a native of South Africa and completed his medical education in Johannesburg. He continued his cardiology training at the Hammersmith Hospital in London in 1949. In 1950, he joined the cardiology department at the Cincinnati Children’s Hospital where he became recognized as one of the founders of the discipline of pediatric cardiolo- gy. His early research and experiments were instrumental in developing the membrane oxygenator. This is still an essential part of the circulatory support during open-heart surgery in both children and adults. As Chief of Pediatric Cardiology at the Cincinnati Children’s Hospital, he was widely recognized as one of the top five most constructive and productive academic cardiology leaders in the U.S.
Dr. Kaplan’s wisdom and patience, and his gentle presence and radiant smile will always be remembered by the countless patients and families whose lives he touched. Samuel Kaplan’s role in developing the mission and vision of the adult congenital heart disease program at UCLA will be a lasting legacy to each of us.
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r. Chang is Assistant Professor in Pediatric Cardiology at the Department of Pediatrics and Director of Pediatric Exercise Physiology Laboratory at the David Geffen School of Medicine at UCLA. Dr. Chang’s research interests include outcomes of children with heart disease, exercise physiology and cardiac rehabilitation. Other areas of interest are physical activity as prevention of childhood obesity and associated morbidities. His exercise physiology laboratory, located at UCLA’s Kurlan Heart Center, is one of few laboratories in California dedicat- ed to studying congenital heart disease. The laboratory is equipped with state-of-the-art cardiopulmonary exercise testing systems that measure metabolic parameters and interface with cycle and treadmill ergometers.
Numerous research studies are conducted in the pediatric exercise laboratory. Dr. Chang is the Principal Investigator of a research study funded by the National Institutes of Health on the effects of exercise training in children after heart transplantation or after Fontan operation. This study will investigate the impact of an 8-week exercise-training program on cardiac, pulmonary function, psychological wellbeing, and habits for physical activity. He is also the Principal Investigator of a study funded by the American Heart Association to investigate the physical activity, obesity and coronary risk factors in children with congenital heart disease. In addition, Dr. Chang and his team are conducting pilot studies on the effect of pre-exercise muscle massage on cardiopulmonary function, and the use of yoga as exercise training for adolescents and young adults with single ventricle after the Fontan operation. Dr. Chang has authored 30 research papers, two book chapters and numerous abstracts in the field of in pediatrics and pediatric cardiology. He enjoys working with students and trainees on research and mentoring junior physicians.
Highlighted Faculty
Ruey-Kang Chang, M.D., MPH
This year we have lost two giants in the field of pediatric cardiology. The Ahmanson/UCLA Adult Congenital Heart
Disease Center was privileged to have been the recipient of their wisdom and support.
Arthur Moss, M.D. 1914-
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r. Arthur Moss was another pioneer in the field of pediatric cardiology. In 1938, he received his medical degree from the University of Minnesota. He joined the cardiology department at UCLA in 1952 where he held top leader- ship positions including Emeritus Professor of Pediatrics and Executive Chair of the UCLA department of Pediatrics from 1967-1977. Dr. Moss played a pivotal role in the formation of the UCLA Adult Congenital Heart Disease Center. Upon the arrival of Dr. Perloff at UCLA in 1977, Dr. Moss supported Dr. Perloff ’s vision of creating a clinic that would care for pediatric patients with CHD once they reached adulthood. Upon his retirement he gave Dr. Perloff the names of all his patients who were 17 and older. These 200 patients were among the first to be included in the Center’s registry which now has over 2000 names.
In Memoriam
Psychosocial Issues Affecting Adults with Congenital Heart Disease:
A Patient’s Perspective By Tracy A. Livecchi, LCSW
Feature Article
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’ve often said that one must have a tough “emotional heart” in order to endure all the challenges that congenital heart disease (CHD) presents to its patients. I know this only too well being one of the oldest living people born with complete transposition of the great vessels. Like other CHD patients, I have had to cope with receiving overwhelming medical information, experiencing sudden life- threatening symptoms, repeated hospitaliza- tions, countless invasive procedures and a stream of medical bills. It is important for patients, family members and health care providers to be aware that psychosocial issues can exist as a result of the experiences described above. Furthermore, if these issues are not properly addressed they can have a strong impact on a person’s medical care and overall quality of life. This article is drawn from the medical literature, conversations with adult patients and from my own experiences as both a CHD patient and a Clinical Social Worker. While reading this, it is important to keep in mind that not every person with CHD is affected in the same way. The degree by which a person is affected depends on personality, diagnosis, medical history, family attitudes, overall emotional and social support, gender, age and prognosis. As a result of their medical experiences, some of those with CHD suffer from depression, anxiety and post-traumatic stress. These symptoms can occur chroni- cally or intermittently and can be triggered by a number of situations. Some triggers include re-hospitalization, physical symp- toms, or something as seemingly simple as a regularly scheduled visit to the cardiologist. According to one study, panic attacks occurred in as many as one in ten CHD outpatients, compared with 2-6% in the general public (Jackson). For some of those with CHD, physical
incapacity, scarring and cyanosis can lead to diminished self-esteem and social isolation (Utens). Heartfelt sadness and fright were terms used in one study to describe com- monalties among the participants (Gantt). Feelings of loss, struggles over body image and the perception of “being different” from their peers are also experienced by some patients. In addition to the psychological and emotional issues, many of the studies suggest that moving into a state of independence can also be a challenge for some patients. One study found that those with CHD more often live with their parents than on their own when compared with the general public (Utens). The reasons for this may include perceived or actual physical limitations, medical related interruptions in education and employ- ment, insurance (both health and life), employment discrimination, the level of parental protectiveness and family attitudes. For most people, the beginning of adulthood signifies the desire to find a significant other. Some adult patients have reported concern about how, when and what to tell their romantic partner about their illness. Since CHD is not always physically obvious to those around them, the information can come as a surprise. There can also be stress dealing with the stereotypes and preferential treatment that are sometimes placed on patients. For instance, throughout my life I found that some people feared my illness—often times treating me with “kid gloves” and lowering their expectations of my abilities. This experience definitely affects the amount of information I offer about my health. Many women are said to be uninformed about their heart disease and reproductive matters (Gantt). As a result, they may not be aware of their options for birth control, pregnancy and minimizing menopausal symptoms. For some women with CHD, pregnancy can present an unacceptable
medical risk to both the mother and/or the unborn child. For others, with the proper medical management, a successful pregnancy is possible. Both men and women report worrying about passing on CHD as well as living long enough to raise their children (Horner). After years of clinical stability, many adult patients experience deterioration in their health and ability to function. These patients often feel angry and betrayed by their hearts, health, physicians and families since no one had told them they would have to face cardiac difficulties again (Horner). I know only too well what this is like. Many years ago I was told that I “was cured” by surgery. Now I am being told “we don’t know” what my future may hold. That information has had a strong emotional impact on me as it would on any individual. Many patients feel isolated because they do not realize there are others faced with similar experiences. According to one study, those with CHD “often suffered silently and worried alone” and out of 29 adult patients, 79% of them had a diagnosable psychiatric illness yet none of them were receiving treatment by a mental health professional (Horner). This may be linked to the correlation of CHD and the frequent use of the psychological defense of denial (Utens). My experience has led me to believe that it could also be due to the obstacles encountered in finding a skilled mental health practitioner. Or, perhaps, could it be because some believe their fears to be too overwhelming for friends, family and even health care professionals? Whatever the reason, it is important to know that there are others facing similar circumstances and by reaching out, one can find help. Associations that may be able to assist patients and family members can be found under the “Related Websites” section of this newsletter. In terms of the psychological and Continues on page 5
emotional issues, I cannot stress enough the importance of having access to affordable mental health services. There are many techniques and interventions that can assist patients in managing their symptoms and maximizing their quality of life. I personally have struggled throughout my life with many of the above issues and I’ve worked hard on a number of levels to ensure that my chronic illness does not define who I am as a person. Instead, I rejoice in the fact that I am a wife, a mother and a counselor, as well as a survivor. Finally, we must remember that many of
those with CHD have not only survived, but they have been found to excel in many areas of their lives. Some of the research shows that, in general, we possess enormous resilience (Horner). Emotionally and socially, we appeared to be better adjusted than our peers (Utens). These findings validate my long-standing belief that by living through such adversity, one tends to become more accepting of other people’s differences and appreciative of the positive relationships in one’s life. On a personal note, I cannot tell you how many times I’ve craved “everyday” problems. And when those problems do occur, I try to navigate my life with what I see as a gift: a clear perspective on what is truly important.
Selected Bibliography Gantt, L, Growing Up Heartsick: The Experiences of Young Women with Congenital Heart Disease, Health Care for Women International, 13:241-248, 1992 Horner, T, Liberthson, R, Jellinek, M, Psychosocial Profile of Adults With Complex Congenital Heart Disease, Mayo Clinic Proc. 2000; 75:31- Jackson, C, Some Psychosocial Effects of Living with a CHD, The Laurel Wreath, A Publication of the Adult Congenital Heart Association, Inc., Spring 2003 Utens, E, Verhulst, F, Erdman, R, Meijboom, F, Duivenvoorden, H, Bos, E, Roelandt, J, Hess, J, Psychosocial Functioning of Young Adults After Surgical Correction for Congenital Heart Disease in Childhood: A Follow-up Study, Journal of Psychosomatic Research, Vol. 38, No 7, pp. 745-758, 1994
Psychosocial Issues Continued from page 4
ACHA Conference
3rd Annual National Conference
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he Adult Congenital Heart Association (ACHA) is a nonprofit organization founded in 1998 which seeks to improve the quality of life and extend the lives of adults with congenital heart defects. Through education, outreach, advocacy and promotion of research, ACHA serves and supports the more than one million adults with congenital heart defects, their families and the medical community. This past April, the ACHA held it’s Third Annual National Conference at the Mayo Clinic in Rochester, Minnesota. It was the largest national conference for the ACHA with over 200 adults with heart defects, members of their families, and medical profession- als in attendance. UCLA’s very own Mary Canobbio was one of the speakers. Some of the topics presented over this 3-day meeting included the future of valve repair and replacement, breakthroughs in congenital cardiac care, insurance obstacles, and reproductive issues. Attendees also had an opportunity to view a couple of films on CHD including “Open Hearted,” a patient’s perspective documentary about Marc Ostrick’s third open-heart surgery. The next national conference will be held in 2006 in the San Francisco area. Plans are underway to hold one of three
regional conferences in Los Angeles. The dates and location for the 2005 Los Angeles Conference will be annouced on the ACHA website at www.achaheart.org. To become a member of ACHA, visit their website and click on the “Join ACHA” link. The Southern California ACHA representatives are Marty Bieti and Donna Smith. They can be contacted via email at mwbieti@achaheart.org and djsmith@ achaheart.org.
ACHA attendees. Front: Dr. Somerville, Dr. Warnes, Mary Canobbio, RN, MSN. Back: Jim Wong, Anthony Cordaro Jr., Amy Verstappen, Karen McNulty, Robin Layman, Paula Miller, Mary Kay Klein, Kyra Ray, Donna Turransky, Anthony Pugliese.
Related Websites
Ahmanson/UCLA Adult Congenital Heart Disease Center www.achdc.med.ucla.edu or call (310) 794-
Adult Congenital Heart Association, Inc. (ACHA) www.achaheart.org or call (919) 861-
Mayo Clinic Congenital Heart Disease Clinic www.mayoclinic.org/congenitalheart-rst/
Congenital Heart Information Network (CHIN) www.tchin.org or call (215) 493-
Camp del Corazon www.campdelcorazon.org or call (888) 621-
The 32nd Bethesda Conference 2000 proceedings www.acc.org/clinical/bethesda/beth32/dirindex.htm
Canadian Adult Congenital Heart Network www.cachnet.org or call (416) 417-
Kansas City Congenital Heart Disease Diagrams www.kumc.edu/kumcpeds/cardiology/pedcardiodiagrams.html
ACHA
