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Heartline Magazine April - June 2004
Living with HCM
From what I gathered Hypertrophic Cardiomyopathy is a
condition in which the muscle of the heart is abnormal (thickening of the
muscle). There is Hypertrophic Cardiomyopathy and Hypertropic Obstructive
Cardiomyopathy. I have the obstructed one (HOCM). HCM or HOCM is not as a result
of a poor lifestyle or being overweight. It is not from using too much salt or
eating fatty foods - nor from smoking, drinking or lack of exercise. You can be
5'6" - 125lbs, and still have HCM (obstructed or not). It is a genetic
condition.
I was told that I was born with HCM, but it was only in 1993
- 40 years after my birth - that I was diagnosed with the disease. After years
of having palpitations - or my heart missing beats - I was eventually admitted
to the Q.E.H. under a Cardiologist's care. I had a series of tests done, which
included a cardiac catheterization and an echocardiogram (ECHO), which is an
ultrasound scan of the heart. I also wore a Holter Monitor to detect
palpitations, after which I was told that I had Ischemic Heart Disease. What
that was I did not know.
Sometimes I felt that people in my life; friends, co-workers
- at the beginning my employers - did not understand HCM well enough to make me
comfortable. They never knew how serious a disease HCM was. They could not
understand that my ability to do things can change substantially from one day to
another. Let's face it; even I have trouble understanding that aspect of HCM
myself.
So my getting sick on a regular basis, being off from work
and being admitted to the hospital at least once a month (I actually have a
"hospital bag" always packed at home), I would hear co-workers saying that I was
only pretending because I did not look sick. I had fallen under the so called
"hidden" disabilities - that is, a disability that does not cause a visible
change in the person's appearance. Not only at work had I experienced that; I
can remember for instance on one occasion going to the Accident & Emergency
Department at the Q.E.H. and the nurse asked one of the orderlies to take me to
the trauma unit. The orderly came, looked at me, returned to the nurse and asked
"who"? The nurse pointed to me, and he said "but she don't look sick." The nurse
said, "if you know what is good for you, you will get her to the trauma unit as
soon as possible." Later in the day the orderly passed and saw me hooked up to
all the necessary machines, and he carne over to me and said, "You really sick -
but you don't look so." I said, "I know", and smiled.
I have to deal with HOCM day by day, and I never can tell
what the day will bring. Some days after getting up, simply showering and
getting dressed for work is very exhausting. I would sit on my bed because I am
totally out of it - all before my workday has even begun. Sometimes I go for
weeks or months without getting an episode. Sometimes I even forget that I have
a serious heart problem. An African doctor that I met at the hospital gave me
the name "Hypertrophic Cardiomyopathy" - that was the first time that anyone had
given my sickness "a name". All I knew was that I had a serious heart disease,
and I could die in my sleep at anytime - from what was called "Sudden Death
Syndrome". Scary!
Right now I feel as though I am the only person in Barbados
that has this disease, as information is so limited. I am very delighted to have
found an organization online, the HCM Association, which not only gives me
information and guidance about the disease, but also connects me to others from
all over the world that suffer with the same illness. We exchange feelings and
experiences with each other, and help and comfort each other. I know that bajans
tend to hide their sickness, but you would be surprised how helpful it is to
talk to someone or vent some feelings with someone that can understand what you
are going through mentally. Someone that would understand you when you say that
you "cannot take the sun" - others would think that you are nuts because you
live in a country with "sunshine". Those around you will tell you to exercise,
but they do not understand that sometimes just making a few steps is like
running up "Horse Hill." Sometimes you get up and by mid-morning you are swollen
all over because you retain fluid. You feel like you could burst. Your heart is
pounding heavily in your chest that you can feel it way down in your stomach.
What I would like to do here is to raise awareness of the
disease. A simple thing as changing your medication - from one brand to another
- can really make you sick. At present I am taking Beta Blockers and Calcium.
That slows down my heart rate really low. When my heart rate goes down to about
37-38, at that point I would start to feel nauseated and I know that it is time
for me to get to the A & E. I would go through the whole process of treatment -
including blood tests, X-ray - all depending on the doctors in the Trauma Unit.
Sometimes I love it when I meet a doctor who is familiar with my sickness, if
not I have to go through everything. From what I understand there is no cure for
Hypertrophic Cardiomyopathy. There is a slight possibility that some drugs may
decrease the degree of muscle thickening. However, no treatment has been shown
to return the heart to normal. Cleveland Medical Centre - in Cleveland, Ohio is
one of the leading hospitals that are doing research on the illness, and I hope
to go there.
I would say that "peace of mind" is a very important part of
living with HCM. Peace of mind at home and at work. At my workplace - management
and staff are well aware of my sickness and I can truthfully say that I do not
get any pressure from my boss. Most of the time I do take in sick at work and I
can call on any member of staff to take me to the Emergency if it reaches the
pornt that. I cannot drive myself. Most importantly, I find a lot of comfort by
trusting God for everything in my life. Even when I am lying on the hospital bed
I always say that I do appreciate what the doctors and nurses are doing for me,
but God has the final word. Sometimes I can't help but to smile when the doctors
and nurses are confused about something that is not right when they are
examining me. My motto is: "when man is confused God is in control."
God is still in the miracle business and I will continue to
trust Him and keep the Faith.
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