Download HB-Winter04

F E AT U R E
Jared Weisman
the Many
Faces of
9 years old; Davie, Florida;
questions answered by his mother,
Janet; father, David
Hope
Heart problems don’t discriminate.
They touch people of all ages, of
all colors, of both genders and of
all walks of life. In their wake they
leave fear and uncertainty. Every
visit by a member of Mended Hearts
is intended to reduce those feelings
by bringing hope to people in need.
Here are four heart patients, ages
9 to 82, who have turned heart-
MHHBWinter04.indd 10-11
Jared was just a few hours old when we found out
there was a problem. The pediatrician detected a heart
murmur, and a pediatric cardiologist was called in.
After further testing, his condition was given a name —
truncus arteriosus.
This condition is a complex malformation where only
one artery arises from the heart and forms both the aorta
and pulmonary artery. Surgery is usually required early
in life. Jared’s first open-heart surgery occurred at Boston
Children’s Hospital when he was 14 days old.
Children with truncus arteriosus need lifelong followup. It’s important that their heart is checked regularly to
see how well it’s working. Children with truncus arteriosus
risk an infection of the heart’s valves (endocarditis) before
and after surgery. They should get antibiotics such as
amoxicillin before dental work and certain surgeries to help
prevent endocarditis.
How has Jared’s heart condition
changed his life?
people, just like the other 24,000
members of Mended Hearts.
What were your major concerns when Jared
was diagnosed with a heart condition?
rough time. These are good-hearted
Winter 2004
When and how did your
son experience heart disease?
Jared’s been very lucky. So far he has no physical restrictions and doesn’t have to take any medications at all, so
there really hasn’t been any change in his life. There are
times when he thinks a lot about his next surgery. He’s been
told that at around age 12 or 13 (depending on his growth),
he’ll have to have his “teenage-size” homograft swapped
out for an adult-size homograft.
ache into hope by being there at a
10
When Jared was diagnosed at birth, the
hardest thing to do was decide when he should
have his surgery. One school of thought was
to wait until he gained some weight and let his
body mature a little. This would give him an
extra edge at surgery. On the other hand, we
didn’t want to wait too long and chance any
complications.
What was significant to you during
Jared’s recovery process?
During recovery, it was very difficult to see all of the
tubes and monitors attached to Jared, especially the ventilator. The doctors had to keep him sedated just enough so
that his body could recover from the strain of the surgery,
but not so much that he would have trouble pulling through
on his own. He amazed all of the nurses and his surgeon with his quick recovery; he only spent seven days at
Boston Children’s Hospital. When we returned home, I can
remember standing in his room many nights listening to his
breathing, making sure everything “sounded right.” Once
Jared was home, the hardest part of recovery was making
sure that his two-year-old sister Alexis treated him gently.
She just wanted to hug him as tight as she could!
Do you have any recommendations or
words of wisdom for others who might
have a child with heart disease?
I would say that the most important thing David and
I did was try to gather as much information as we could
about Jared’s condition and speak to more than one doctor.
It was important for us to know all we could so that we felt
confident in our decision-making process.
How has Mended Hearts played a role in
Jared’s recovery?
Jared is anxiously waiting to visit his first cardiac
patient and family. He wants to spread his words of hope.
Through Mended Little Hearts we can both give support and encouragement to families whose child is going
through a cardiac procedure. As Jared says, “Just look at
me! I can do everything!”
Winter 2004
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11/7/04 9:21:34 PM
Amanda
Pennekamp
John Connor
82 years old; North Charleston,
South Carolina; wife, Rosalie;
married 52 years
23 years old; New York City;
1st runner-up 2004 Miss USA contest
What were your major
concerns when diagnosed
with your heart condition?
What were your major
concerns when
diagnosed with your
heart condition?
When and how did you
experience heart disease?
I have an aortic stenosis, which is a congenital problem. My aortic valve doesn’t open
as much as it should. The doctors told my
parents when I was a baby that I would never
be able to be physically active. I was born in
1981 when they were just coming out with all
the hi-tech equipment. I don’t have a regular
heartbeat; in fact, when I go to the cardiologist, there’s always a line of students to come
in and listen to it. The doctors say it is a “classic” irregular heartbeat. Despite what the doctors said, I’ve been
able to be physically active all my life. I do have to go
the cardiologist every year just to monitor the situation.
When I would get physicals for cheerleading, the doctors
would always flip out when they heard my heartbeat.
I started dancing when I was 3 years old. I think the
advances in technology allowed the doctors to monitor the
situation and discover that it wasn’t as bad as they thought.
In addition to dancing, I cheered in high school and college,
taught aerobics, and I power walk.
How has your heart condition
changed your life?
I have to take antibiotics before I go to the dentist, and I
can’t take decongestants when I have a cold. It’s helped me
be more aware of how heart conditions affect other people.
Winning the Miss South Carolina pageant and being first
runner up at the Miss USA pageant allowed me to use my
titles as a microphone to tell people that heart disease is a
problem for women and not just men. It’s allowed me to
be an advocate and raise awareness in my community. For
instance, I wear a red dress pin on my sash to raise awareness of heart disease in women.
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Winter 2004
When I was diagnosed, I was
a baby so I wasn’t worried. I
know it really scared my parents
when the doctors told them I
wouldn’t be able to be active. As
I’ve gotten older, I have worried
if I’m going to have problems in
the future.
What was significant to
you during your recovery
process?
I really haven’t had to recover from anything, but I have
always gone to the cardiologist when I was supposed to.
Do you have any recommendations or
words of wisdom for others in your generation who might experience heart disease?
Know that a key step in preventing heart disease complications is actually going to the doctor. Take it seriously.
And join the organizations in your community that raise
awareness and offer a helping hand because that may be a
solution for you in the future.
How has Mended Hearts played a
role in your recovery?
It’s not only a support group where you can go to learn
more about heart disease, but they’ve helped me become
more aware and to know that I’m not the only one with a
heart problem. They have provided me with information
that can help my loved ones. They have been a wonderful
support group for me, like when I went to Miss USA and
moved to New York to start my acting career. They still
write me. It’s been a wonderful support. I’m so glad I
found it.
When and how
did you experience
heart disease?
I knew I would eventually have to
have an operation but I just went along
and did whatever I wanted to do. I was
the controller of an international organization. We had international contracts
with the State Department, so I traveled a
lot before I retired in 1985. The heart condition didn’t bother me psychologically; it
didn’t stop me from doing things. But after
I retired, I guess I had more time to think
about it, and it got worse.
About 30 years ago
I went for a physical for
an insurance policy, and they told me I had a
murmur. The doctor told me I had an enlarged heart, but
at that time there was nothing they could do about it. But
when I began feeling the effects of it as it enlarged, the
doctor said it was time for an operation.
When they first found my heart disease in 1964, they
weren’t doing mitral valve surgery. But by 1996 when the
doctor said, “This is it,” they were fixing this problem
with an operation. So now I have a mechanical valve in
my heart, a St. Jude valve, but you’d never know I have it.
I carry a card with me that has a serial number and model
number so they will know exactly what to get if they have
to replace it, but my doctor said mine should be good for
the rest of my life.
My recovery was slow but I’m doing very well now.
Most heart patients who have had surgery have a period of
depression. Mine lasted about a year, off and on.
How has your heart condition
changed your life?
How has Mended Hearts played a
role in your recovery?
I was gradually slowing down, I didn’t swim as much, I
didn’t engage in athletic activities. I used to swim and run a
lot, but I had to slow down because I was getting tired and
short of breath. Before the operation I could hardly walk
across the room without being out of breath, but now I’m
fine. I can do everything I want; I can even cut the grass
with a push mower.
I’m on a blood thinner for the rest of my life. I have to
have my blood checked every month. I see my cardiologist
twice a year, and I see my primary physician at that time.
Mended Hearts helped me quite a bit. They gave me
hope, and you’re around people who have been through
what you’re going through. It makes a big difference, and
that’s why I’m active in Mended Hearts. Right now I’m the
president of Chapter 175 (North Charleston), and I was vice
president for five years. I’ve been in the visiting program for
six years.
I try to encourage people because I know what they’re
going through. Most of the time when I leave, the people
are really talking. They feel better and I feel good, too.
What was significant to you
during your recovery process?
Do you have any recommendations or
words of wisdom for others in your generation who might experience heart disease?
Listen to your doctor and follow his or her advice
whether you like it or not.
Winter 2004
13
11/7/04 9:21:47 PM
Cindy HunnicuttWarnack
50 years old; Lewisville, Texas;
husband, Larry; married 2 years
When and
how did you
experience
heart disease?
When I was 40 I
had a heart attack.
I waited 6 hours
because I thought
it was indigestion.
But when it didn’t go away, I realized that
I better get to the emergency room. It felt like an anvil on
my chest. I called a friend who is a nurse, and she took
me directly to the hospital. The heart attack was due to
long-standing diabetes, which had been diagnosed when
I was 17.
After that I thought everything was OK. Every year I
went for a stress test, and everything seemed fine. But three
years later, I failed the stress test. I was 43. I went in for a
heart catheterization. One artery was 99 percent blocked,
so the next day I had quadruple bypass surgery. I really had
no symptoms as far as the bypass surgery. Diabetes causes
nerve damage so you don’t have the typical symptoms. The
stress test saved me.
How has your heart condition
changed your life?
I see life differently now. I try not to let the small stuff
bother me. I don’t always succeed, but I try. I cherish each
day. I’m grateful for all my blessings, for my friends and
family, and most of all for my husband, Larry, who has
been so supportive. I also realize that exercise is important
and so is your diet. I know now that it’s so important to take
care of myself.
What were your major concerns when
diagnosed with your heart condition?
With the heart attack, my concern was, would I live?
With the open-heart surgery, my major concern was that
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Winter 2004
I would not be the open, enthusiastic
person I had always been. I thought I
would lose that person. I didn’t want
people to look at me and say, “She can’t
do this or that.” I want to do everything
that life has to offer, to grab all the gusto,
I guess, and I was concerned that my
heart condition would jeopardize that.
What was significant to you
during your recovery process?
First of all, both my cardiologist and surgeon were
wonderful, and that makes a difference in your recovery.
Also cardiac rehab made a big difference, plus I had a great
support system. My employers really came through for me
— they took me into their home and stayed with me after
my mother had to go back home. Friends and family made
all the difference.
Do you have any recommendations or
words of wisdom for others in your generation who might experience heart disease?
I would recommend they “play by the rules”: Put
exercise in your daily schedule. Make healthy choices
in eating. Take time to relax. Take care of the body, the
mind and the spirit. They all work together. Have fun and
enjoy life.
How has Mended Hearts played
a role in your recovery?
It kept me in line. Visiting in the hospital made me walk
the walk. Giving back by visiting people in the hospital
really helped my recovery. It allowed me to see that there
is life after heart disease because I have met people who
thought there was no hope who have recovered.
I know why I went through my heart events — because
I had to help women learn about heart disease. I understand
that I went through this to help other people.
News From National
Meet Our New Program Manager
M
ended Hearts
launched two
new generational outreach
programs in the spring
and summer of 2004.
Mended Little Hearts
provides support and
encouragement to parents of children with congenital
heart defects (CHD) or other heart disease. Hopeful
Young Hearts is for heart patients ages 25 to 50.
Susan Goldberg joined the staff of Mended Hearts as
Program Manager this past July. As Program Manager,
she is responsible for implementing these two new
programs. She brings a variety of relevant experience to
this position. From 2000 to 2002, Susan served as Public
Relations/Promotions Coordinator for KERA, the PBS
radio and TV stations in Dallas. Among other duties, she
co-managed KERA’s Fort Worth/Dallas Arts Series and
Domestic Violence Project. Prior to her work in public
broadcasting, Susan practiced medical speech pathology
in hospital settings throughout the United States. Her
Let’s Stay in Touch!
T
his fall, the National Office has
sent several Internet Bulletin
messages to its distribution list of
some 765 Mended Hearts volunteers
and members for whom we have
an e-mail address. With each
transmission, we have received
undeliverable notices for some of our
member addresses and we want to
make sure that you receive the timely
information updates.
If you have not received an
Internet Bulletin alert from us this
fall, chances are we do not have an
updated e-mail address from you.
Please notify us by sending your
name, chapter number and e-mail
address to [email protected].
caseload included patients of all ages, from infancy to
the elderly. As a department manager in hospital settings,
Susan developed neurogenic swallowing programs for
adult patients.
“I sincerely believe in the mission of nonprofit organizations,” says Susan. “I have been a volunteer myself
since childhood, from collecting for UNICEF in the
neighborhood to becoming a Red Cross volunteer in my
teens at the local eye hospital to providing assistance to
a woman’s shelter thrift shop and the Susan G. Komen
Foundation in my adult years.
“The statistics certainly reveal one aspect of the
far-reaching effects of heart disease and disorders in
all generational populations. However, I am continually
motivated by the ‘heartfelt’ stories that I hear from each
family or survivor. If we can make that challenge more
manageable for them, then we can truly appreciate the
gift that they give to us — sharing their lives.”
Susan encourages volunteers to contact her about
Mended Little Hearts and Hopeful Young Hearts with
suggestions or questions. She can be reached at
214-706-1192 or [email protected].
It Adds Up
M
ended Hearts
volunteers provide
significant support
to Heart Walks throughout
the country. Last year,
Mended Hearts chapters
contributed $255,152
to the American Heart
Association through
the Heart Walk and
Representing Mended Hearts volunteers nationwide,
other special events.
Henry Tolbolka, Susan Goldberg, JoAnn Tolbolka,
Tim Elsner and Delores Dries show their support at
Mended Hearts raised an
the Dallas American Heart Walk.
additional $9,696 in events
specifically for the AHA (bake sales, garage sales, etc.)
Chapters also reported more than 24,007 hours of
volunteer time to the AHA. That translates into another
$426,124 (applying the Labor Department’s average hourly
wage figure of $17.75).
The value of Mended Hearts’ support to the AHA last year
exceeded $690,000!
Winter 2004
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