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the Beat SUMMER 2005 SUMMER 2005, VOL. 13, ISSUE 2 Marijuana and Congenital Hearts Wynne Chiu, BSN, RN, CCN (C) and Doreen Fofonoff, MN, RN, CCN(C) A recent Health Canada poll in 2003 showed that one third of all teens aged 12-19 had tried smoking marijuana more than once, with older teens using it more often. For many young adults with congenital heart disease (CHD) smoking marijuana is as socially acceptable as smoking tobacco or drinking alcohol. Many of these users assume that this drug is not harmful. However, marijuana does affect the heart by changing heart rate and blood pressure. These changes may have no effect on a person with a normal heart but could cause serious problems for someone with CHD. Marijuana is most often smoked and its effects on the body last for four to six hours after a single dose. The drug starts to leave the body about 20-30 hours after it is smoked. It can be found in the urine for several days after it is used and up to two months in heavy users. In low or medium doses, marijuana increases the heart rate, blood pressure and blood flow. It may cause a very fast heart rate called tachycardia. At high doses, the drug may cause a very slow heart rate (bradycardia) and low blood pressure (hypotension). With a low blood pressure and heart rate, the person may feel very weak, dizzy and generally unwell because the heart is pumping less blood to the brain and around the body. ECG changes have also been reported. It is unknown whether these changes are related to the drug itself or whether it is related to the rapid heart rate that the drug causes. The changes go away once the drug is out of the body. An increase in abnormal heart beats coming from the upper chambers (atria) or lower chambers (ventricles) of the heart can also occur. Marijuana may also increase angina (chest pain) in people with narrowed heart (coronary) arteries. Using marijuana with other drugs, such as ecstasy, crack or cocaine may cause life threatening abnormal heart rhythms and shock. A NEWSLETTER WRITTEN BY VOLUNTEERS FOR THE WELL-BEING OF ADULTS WITH CONGENITAL HEART CONDITIONS Marijuana has other physical health risks. The marijuana smoke has more than 400 chemicals that can affect the lungs. continued on page 2 IN THIS ISSUE Marijuana and Congenital Hearts Book Contest • Ebstein’s Anomaly How You Can Help Tribute to Dr. John Kirklin • Volunteer Work Annual Conference for the Doctors & Nurses Clinic Updates • Contributors VISIT OUR WEBSITE CACHNET.ORG 1 2 3 4 5 © 2005 Canadian Adult Congenital Heart Network PAGE 1 Marijuana and Congenital Hearts continued from page 1 SUMMER 2005 It m a y c a u s e a c h r o n i c c o u g h o r bronchitis. The drug impairs motor skills, lessens coordination and balance, and may decrease male sex hormones. Marijuana may also have psychological health risks. These include impaired judgment, learning and memory, and difficulty concentrating. Marijuana can trigger psychotic episodes in people with schizophrenia or who have a family history of schizophrenia. Recent studies have shown that frequent use of marijuana may cause depression and anxiety. With all this in mind, it is easy to see why marijuana may worsen existing problems for people with CHD. Some of these problems are low heart rates, low blood pressure, high blood pressure, abnormal heart rhythms, heart failure, angina, depression and anxiety. It is important that patients tell their heart doctor they smoke marijuana. They should ask what effect it will have on their CHD. People born with heart defects are able to live healthy lives. They need to care for their hearts by making healthy lifestyle choices. Not taking drugs is a healthy lifestyle choice. • Ebstein’s Anomaly Doreen Fofonoff, MN, RN, CCN(C) Ebstein’s anomaly, also called Ebstein’s malformation, is a congenital heart defect in which the tricuspid valve is abnormally formed. The defect is present at birth. It occurs in about 1:20,000 live births. Ebstein’s anomaly occurs in less than 1% of all congenital heart defects. It affects both males and females equally. In the normal heart, the tricuspid valve has three “flaps” or leaflets. The valve splits the top right heart chamber (right atrium) from the bottom right heart chamber (right ventricle). The leaflets of the valve act as one-way gates, letting blood flow from the right upper chamber PAGE 2 into the right lower chamber. The valve leaflets close once the blood has flowed into the right lower chamber. This stops the blood from leaking back into the right upper chamber when the right lower chamber pumps blood into the lungs. In Ebstein’s anomaly, the tricuspid valve is moved downward into the right lower chamber. This may cause the right upper chamber to be larger than usual and the right lower chamber to be smaller. As well, one or two of the three valve leaflets may be stuck to the wall of the heart. As a result, the leaflets do not close properly and may leak. When the valve leaks, some of the blood pumped by the right lower chamber flows backwards into the right upper chamber. As a result, the heart does not work as well. The right upper chamber of the heart may enlarge as a result of the increased blood that leaks back into it. Over half of the people with Ebstein’s anomaly also have a hole in the wall between the heart’s two upper chambers (atria). This hole is called an atrial septal defect or ASD. The hole causes oxygen rich blood from the left upper chamber to blow into the right upper chamber with each heart beat. This decreases the amount of blood that would normally go forward to the body. One in four patients with Ebstein’s anomaly may also have abnormal heart rhythms called arrhythmias. These rhythms are most often fast, but may also be slow. Diagnosis of Ebstein’s Anomaly Severe cases of Ebstein’s are often diagnosed shortly after birth. Ebstein’s may not be found until a person starts to have problems (symptoms) in their late teens or early adult life. continued on page 3 SUMMER 2005 People with mild Ebstein’s may not have any problems at all and their defect may be found during routine exams. HOW YOU CAN HELP The heart doctor (cardiologist) may confirm the diagnosis of Ebstein’s anomaly by doing a full physical exam and several tests. These tests may include: Make a difference, make a donation. The CACH Network and the Adult Congenital Heart Council are a group of lay and professional volunteers determined to promote the interests of Canadians born with heart defects. We need your help to accomplish our objectives. Thousands of Canadians are now alive and well thanks to dramatic advances in the care of heart defects. Donations are needed to ensure that people with heart defects continue to enjoy a complete life, and to make sure that our children and adolescents will be even healthier as they grow to adult life. The CACH Network c/o BB&C 6835 Century Ave., 2nd flr. Mississauga, Ontario, Canada. L5N 2L2 Please make your cheque out to: The CACH Network. All donations are tax deductible and a receipt will be issued for tax purposes. • An ECG (electrocardiogram) to look for an increase in size of the right upper chamber and abnormal heart rhythms. • An echocardiogram (ultrasound of the heart) to look for a leaky and abnormal tricuspid valve, a large right upper chamber, and a small right lower chamber. This test will also provide information about how well the heart pumps. • A chest x-ray to look for an increase in the size of the heart. • A Holter monitor (24 hour ECG) to look for abnormal heart rhythms. • An exercise stress test to see how much the person can exercise and to see if abnormal heart rhythms occur during exercise. Symptoms of Ebstein’s Anomaly People with mild Ebstein’s may not have any symptoms at all. However, those with moderate or severe Ebstein’s may have shortness of breath with exercise, decreased energy, dizziness, lightheadedness, feel tired, or have slow or very rapid heart rhythms (arrhythmias) or blueness of the lips, fingers or toes (cyanosis). Treatment Options Treatment of Ebstein’s depends on the severity of the defect and the person’s symptoms. The heart doctor may advise regular check-ups if the person has no symptoms or no abnormal heart rhythms. If symptoms are present, medication may be given to improve the work of the heart. Medicine may also be used to prevent fast abnormal heart rhythms. For some people, the source of the rapid heart rhythm may also be removed by a procedure called radiofrequency ablation. The ablation uses sound waves to destroy the tissue that is causing the abnormal rhythm. PAGE 3 Surgery may be advised when the patient has severe symptoms, or when the heart starts to enlarge and the heart does not work as well. The surgeon may repair the tricuspid valve or replace it with a tissue or mechanical valve. If there is an ASD, it is usually closed at the same time. A Maze procedure may be done during surgery if the person has abnormal fast heart rhythms. During this procedure, the surgeon makes a series of cuts in the right upper chamber of the heart. These cuts interrupt the electrical pathways that cause the abnormal heart rhythm. Ongoing Care: Regular Check-Ups: Ebstein’s anomaly is uncommon so people with Ebstein’s anomaly should receive ongoing care with regular check-ups at an adult congenital heart centre where the heart doctors have expertise in congenital heart defects. Regular check-ups allow the heart doctor to detect problems early so that the best care and treatments can be offered. Report Symptoms: Symptoms such as decreased stamina, increased shortness of breath, fatigue, cyanosis or episodes of rapid heart rhythm, fainting, or swelling of the feet and legs should be reported to the family doctor or heart doctor. These problems may develop or worsen as the valve leaks more. Activity Restrictions: Being physically active is good for the heart, so people with Ebstein’s should stay active. Ask the heart doctor which activities are safe. If the valve leakage is mild and tests show no abnormal heart rhythms, people can usually perform most physical activities. However, if the valve leakage is moderate or severe, the heart doctor may advise some physical activities be avoided. Endocarditis Prevention: Endocarditis is an infection that can damage the inner lining of the heart or continued on page 4 SUMMER 2005 VOLUNTEER WORK Spending your time helping others can be very rewarding. We need you! We're looking for people to help with advocacy to provincial governments and hospitals to improve the services available to adult patients with congenital heart defects across Canada. We're looking for people to join our mentorship program - patients supporting patients - friendship, and encourage patients who would welcome a friendly voice, and perhaps speak with someone who has gone through a similar challenge around the time of surgery or special procedures. Becoming involved in the educational evenings for patients and families would also be greatly appreciated. We ' r e l o o k i n g f o r people to help organize and work on our fundraising program, to offer names of potential donors, and celebrities that may be willing to participate in a fundraising event. We need people to contribute articles or reviews for upcoming issues of "The Beat". If you feel you can help in any other way we gladly encourage your participation. Go to cachnet.org and click on “how you can help”. • PAGE 4 the heart valves. People with Ebstein’s anomaly are at risk of endocarditis. They usually need antibiotics before certain dental or surgical procedures to prevent endocarditis. As well, they should also look after their teeth and gums and avoid behaviors that may increase the risk of endocarditis (intravenous drug use, body piercing and tattooing). Pregnancy: Pregnancy puts many demands on the normal heart. Patients with Ebstein’s should consult with their heart doctor about the safety of pregnancy, before they become pregnant. The heart doctor will assess what effect the pregnancy will have on the heart valve and the work of the heart. The heart doctor will decide what care is required before, during and after the pregnancy. TributetoDr.JohnKirklin Carol (Hyman) Allan, "A Grateful Patient" Today was a most unusual day for me. My husband Ray left yesterday for a golf week in Ireland and my twin sister Charlotte is visiting with family in Toronto. My stomach had been in knots all week with the anxiety over the temporary absence of the two most important people in my life. This morning for no reason, I decided to search the internet for information about the Kirklin Clinic at UAB, which I had found a picture of a few years ago. I was not prepared to read that Dr. Kirklin had passed away on April 21, 2004. This date has a huge impact on me for not only did I have my first heart surgery at the Mayo Clinic on April 21, 1949, but my father passed away on April 21, 1965. Much significance and good in my life surrounds the date of April 21. It is ironic for me to believe that on April 19 of 2004, the Canadian Adult Congenital Heart Network in Toronto posted my story entitled Courage to Heal a Broken Heart on their internet site under their Newsletter the beat at www. cachnet.org. In my story I give gratitude and praise to Dr. Kirklin for his expertise in saving my life even though he told me plainly that I would never walk out of the Mayo Clinic alive and it wasn’t he who saved my life. Dr. Kirklin and I first met in late October of 1957. He was young, stern and handsome. I was a young teenager, shy, frightened and motionless as we set eyes on each other for the first time at St. Mary’s Hospital in Rochester, Minnesota. My world was certainly going nowhere. The principal of my high school asked mother to no longer send me to school because of heart episodes I was having during class as he told her not only was I disrupting classes, but I was upsetting students as well. The principal requested that until I had proper medical attention, I was not to return to school. This was heartbreaking news for me as I was just 15 years old and a grade ten student. Lucky for me; however, I had just had a visit with my cardiologist in Regina, Saskatchewan about 10 days prior to all this drama unfolding. He insisted strongly that I must again return to the Mayo Clinic and strongly insisted that no one other than Dr. John Kirklin would be allowed to perform my surgery. Dr. Israels, my cardiologist, had just returned from the United States where he had spent considerable time viewing surgeons perform cardiac surgery. Dr. Israels told mother that if Dr. Kirklin would not do my surgery, then I was to return home. There would be no surgery. How could I ever forget Dr. Kirklin telling me that there was no surgical technique developed yet for opening the pulmonary artery? But while on the operating table, he made the decision instead of stitching me up and sending me home to die, to proceed with his inspiration to try and open my pulmonary artery. Whatever decision he made, he felt he would still have to send me home to die. I am forever grateful for his wisdom, fortitude and deep involvement in going the extra mile to save my live. It is hard for one to imagine the drama that unfolded while I was under his surgical SUMMER 2005 Tribute continued from page 4 care. Little is even known to my close family members about that traumatic day back in January 1958. Following the surgery I continued to bleed profusely and because I was still alive, Dr. Kirklin made the decision to give me one more chance and return me to surgery in the wee hours of the morning to try and stop the hemorrhaging. When I was about to return home from the Mayo Clinic following my surgery, Dr. Kirklin asked me to always continue to write him and let him know how I was doing. I feel this is a very special person who cared beyond the operating room. How could I ever imagine back then in January 1958 that I would soon start to walk for the first time without gasping for air, turning bluish black and experiencing constant pain in my chest? I had been diagnosed with Tetralogy of Fallot. In April I would be 16 years old. Throughout my lifetime, Dr. Kirklin has been my one and only hero. Dr. Kirklin was above and beyond what I could only imagine in a person. His memory will always live on through me. How could I ever forget the man who gave me a second chance at life? I truly think of him every day. And to his family I say a special thank you. Thank you for giving this wonderful human being an opportunity to pursue such wisdom and courage. He has done so much good for young congenital heart patients like me. Words cannot say enough about my gratitude for him. Thank you for allowing him to come into my life at a time when I was most desperate. I would like to close by saying, that since my surgery in 1958, I have had no further cardiac surgery nor taken any cardiac medication. I can’t tell you how lucky I feel. For me, this is the greatest gift of all mankind. • PAGE 5 AnnualConferencefor theDoctorsandNurses May 26 - 28th was the American College of Cardiology – International Symposium on Congenital Heart Disease in the Adult - Toronto 2005 This conference was the 15th annual conference. The course provided adult congenital specialists with specific talks and workshops on the management of congenital patients. The speakers came from all over the world including, United Kingdom, Netherlands, Denmark, Switzerland, USA and Canada. It was an excellent conference where the doctors and nurses were able to discuss how to best care for their patients to keep them heart healthy. • SUMMER 2005 CONTRIBUTORS EDITOR: Lori Newman, RN Nurse Clinician Calgary Adult Congenital Clinic, Calgary Hypertrophic Cardiomyopathy Clinic WRITERS: Jeanine Allen, MN/ACNP Acute Care Nurse Practitioner, Toronto Congenital Cardiac Centre for Adults (TCCCA) Wynne Chiu, BSN, RN, CCN (C) Patient Educator, Pacific Adult Congenital Heart Clinic (PACH) Doreen Fofonoff MN, RN, CCN(C) Clinical Nurse Specialist, Pacific Adult Congenital Heart Clinic (PACH) Carol (Hyman) Allan, Volunteer DESIGN & LAYOUT: Ray Ganesh Canadian Adult Congenital Heart Network www.cachnet.org Clinic Updates Calgary Adult Congenital Heart Clinic Pacific Adult Congenital Heart (PACH) Clinic Our 2005 Calgary Marfan Syndrome Information Day was held on June 11, 2005 at the Peter Lougheed Centre Auditorium. This event is held in conjunction with the Canadian Marfan Association and the Calgary Adult Congenital Heart Clinic. Topics to be covered include genetics, cardiac surgery, pregnancy, living with chronic disease, ophthalmology, exercise, orthotics, orthodontics, and exercise. We are looking forward to providing our patients and their families with the best information available. Registration information is available at www.marfan.ca Wynne Chiu, BSN, RN, CCN(C) has joined the PACH Clinic as the new Patient Educator. Wynne most recently worked as a staff nurse on the Cardiac Surgery ward at St. Paul’s Hospital. Her position is parttime and she will be working be working Tuesday, Wednesday and Friday. She joins Doreen Fofonoff, who is the Clinical Nurse Specialist. Congratulations to our clinic social worker, June Yee and Nurse Clinician, Yvonne Balon. They have had their abstract “Predictors of Psychosocial Well-Being in Adults with Congenital Heart Defects” accepted at the international conference on Global Perspectives in Chronic Disease Management. This conference will take place in Calgary at the end of September. - Lori Newman - Doreen Fofonoff Toronto Congenital Cardiac Centre for Adults (TCCCA) It is summer time in Toronto again. Lots of good things happening here. The Fellowship program is expanding again with Fellows from Australia and Saudi Arabia arriving soon. We are also in the process of interviewing for the Director of the Toronto Congenital Program at the University Health Network. The dedicated staff Cardiologists at UHN are very committed to making the Toronto program a strong program with a patient centred approach and world leading congenital cardiac care. The clinic is busy as usual and patients are certainly being patient (no pun) with the potential delays in their yearly appointments as we absorb Dr Gary Webb’s patients into the other cardiologist’s schedules. If patients have any concerns about their up coming appointment please call the clinic at 416-340-4206. - Jeanine Allen PAGE 6 A round of applause to Cari Olson, a PACH patient, who has organized the Paddling with Heart Paddlethon in collaboration with St. Paul’s Hospital Foundation. On Saturday, June 4, 2005, the Women’s Racing Team paddled from Burrard Marina in Vancouver to Nanaimo on Vancouver Island, a distance of 56 km which will take anywhere from 5-10 hours. If extreme ocean conditions prevent a safe crossing the paddlethon will take place in local waters. Fifty percent of the money raised will be donated to the PACH Clinic. For more information contact St. Paul’s Hospital Foundation at 604.682.8206 or 1.800.720.2983.