Welcome to TripleHeart.org.
Our Name: TripleHeart, Inc.™
Our Motto: Together - for Life
Our Purpose: To provide a place on the Internet
for heart and other organ transplants and primary
care givers to contact each other across the country
and around the world.
Our Mission: To provide a forum in order
to support each other in formal and informal settings
on the phone, on the net and/or in person on a regular
or irregular basis to better understand the highs
and lows of the walk we share.
Our Vision: That no transplant, pre- or post-,
be alone when needing answers or understanding from
someone who KNOWS what the ups and downs are, the
roller coaster ride of physical and emotional feelings
that happen to, not all, but most of us.
Our Acknowledgement: That no two transplants
are identical any more than any other group of people.
However, we do have a lot in common and can be a
source of knowledge and comfort to one another in
order to improve and possibly extend our unique lives
as TRANSPLANTS.
We, Joanne and Kel, have found that most Heart Transplant
Recipients and Primary Care Givers have almost no
contact, if any, with others like ourselves after
the Heart Transplant procedure and very little contact
while we are listed, much less while we are deciding
to become transplant candidates or going through
the qualification process.
I, Kel, one day while on the waiting list, asked
my heart transplant doctor if his nurses had a job
description. His answer was, “Yes.” I
asked if the transplant coordinators had job descriptions.
Again he replied, “ Yes.” Then I asked
if he had a job description. Somewhat confused as
to the reason for my line of questioning he answered, “Of
course, why do you ask?” “Because I have
a job description and I don’t have any idea
what it is,” I complained.
The week before I had been 45 minutes late for a
checkup and arrived rattled. Having been a salesman
all over metro Atlanta for 25 years, I never got
lost. I knew the city and surrounding area about
as well as anyone. I got hopelessly lost and, a number
person couldn’t remember the doctor’s
office number, the number at the hospital, my own
home phone number and didn’t even have the
presence of mind to dial 911. I was terribly shaken.
When I finally found the hospital and the doctor’s
office a transplant coordinator asked what had happened.
When I explained what had transpired, she smiled
and said, “That’s great! You just moved
up on the list!” Then she shared with me that
it was fairly common during the waiting process for
patients to have lapses of memory and was an indication
of a worsening condition. When I asked why I hadn’t
been warned, she gave a very logical and very unsettling
answer. Not all candidates had the symptom, so why
bother the patient with information about something
that might not occur. And…the symptom could
be easily faked in order to move up on the list.
True, true and false. True…it is unfair to
cause a patient unnecessary worry about a minute
possibility. True…it is unfair that pre-transplants
are like other groups of people. We are not all perfect
and good and some of us would definitely TAKE ADVANTAGE.
False…medications are required to list possible
side effects. In this most radical situation we should
have access to information…each other.
Doctors and hospitals are prohibited under the doctor/patient
confidentiality ethic from letting us know who each
other (heart transplant patients) are. And a web
site such as this does not offer FREE PRIZES and
obviously doesn’t appeal to the masses…so
millions of people are not hurrying to find transplant
sites or cancer sites or sites about the best beaches
to be attacked by sharks. That brings us to the HARD
PART. We can only find each other through friends
who are willing to pass the word along. So…FRIENDS…please
pass the word along not just to transplants; but
also to all your friends (if we only pass the message
to transplants we know, we are limited)…but
if we pass the word to just 10 friends and each one
of them sends the message to just 10 friends, etc.,
etc. that’s how we will get our
message to those who need it.
Sincerely,
Joanne and Kel Kelley
Ezekiel 36:26 “I will give you a new
heart….” |
