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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.