“I was 12 years old when life
changed for me. Prior to that, I was a normal child living
a normal life. I went to one
of the best elementary and middle schools in my city,
had excellent grades, and was very active in my church
and
in the arts. Then one day I noticed there was a little
swelling around my eyes. The next day it spread to my
forehead, so much so, that when I pressed it, there was
a pretty
noticeable indentation. Figuring that it was another
of my sinus infections, my mother began treating me with
over-the-counter
medications.
However, after the swelling spread
to my abdomen and I was unable to eat very much without becoming
ill from “fullness”, my mother brought me in to see my pediatrician.
That one doctor’s visit forever changed my life. After testing,
questioning and observation, my doctor decided that I needed
to be seen by a….. nephrologist. Nephrologist? What in the
world was that? My mother and I were both perplexed. My pediatrician
explained that I had a kidney disease that might or might
not go away, and a nephrologist was a doctor specializing
in kidney ailments. My mother was devastated. We prepared
for the long journey ahead.
After months of testing, I was diagnosed
with “Nephrotic Syndrome”. To this day no one knows why I
got it, or why it developed so late in childhood, since it
usually occurs in early childhood. A treatment program of
various medications and hospitalizations (to decrease the
edema and anasarca in my body) began. My doctors were wonderful,
but I had no one to talk to. I felt alone, but never complained
so my mother would not worry.
Eventually, my life appeared to get
back to normal. I returned to school and the activities
I loved. All was well until my sophomore year of high school.
I became constantly tired, was in and out of the hospital
with high creatine levels, and felt sick most of the time.
Then I was presented with the option of dialysis. I can still
see the tears that welled in my mother’s eyes and rolled
down her cheeks at this moment. The doctors believed this
needed to be done quickly since my creatine levels had
reached 14 and higher. CVL hemodialysis was suggested as the most
effective option for my condition.
Life as a teenage dialysis patient
was not easy. I missed school often and it was difficult
to remain social since I was tired all the time. However,
I took the opportunity to learn more about myself, the dialysis
process, and how to make new friends. Because, I discovered,
I was not alone. There were quite a few other kids my age
in the dialysis unit.
After a few months of hemo dialysis,
my CVL began clotting. We switched to peritoneal dialysis.
Then, because of recurring infections, the doctors suggested
that I consider a kidney transplant.
I was 15 and the search was on to
find a kidney donor. When we learned that a living family
donor would result in a higher success rate, members of
my family lined up one by one to be tested for a match.
It was
eventually decided that the closest match was my mom. To
make sure that I was mentally and emotionally prepared
to take on the responsibility of having the gift of a
transplant, the doctors
had me see a psychologist before the surgery. The transplant
occurred on June 14, 1994, and I was up and feeling energetic
within a week.
The surgery was the best thing that
happened to me, and it showed. Eventually I was back to
a normal teenage life filled with homecomings, proms, and
hanging
out with friends. It was as if life had begun all over
again for me. And it was wonderful. I graduated high school
with
honors and entered Albany State University in Albany, Georgia
in the Fall of 1997.
Life in college was pretty uneventful
until I became ill during my sophomore year. I missed a
half semester of school and was uncertain if I would return.
My
mother was dead set against me being so far away from our
home in Wisconsin. But after much conversation and negotiation,
she agreed that I would attend the University of Georgia
with my best friend. While attending school there I met
my soon-to-be
husband at a leadership conference in North Carolina. I
completed my Bachelor’s degree in Psychology in 2001, and
we were married
the night of my graduation and moved to Research Triangle
area of North Carolina where my husband worked.
Since being here I’ve held various health and social service
related positions. I’ve managed a non-profit health clinic
where I also counseled teens and women about women’s health
issues to help them make informed decisions for their future.
In another situation, I’ve been a mentor to “at risk” teen
and preteen young women, teaching a program that emphasized
self-esteem, healthy living habits, and the importance
of education. I developed a wonderful relationship with
these young women, and also helped them to build a relationship
with each other. I have also worked for the state of North
Carolina as a disability determination specialist in which,
with the help of doctors and psychologists, I determined
whether a person was eligible to receive disability benefits.
Finally, in December 2004, I became
the new mother of a beautiful and healthy daughter.
For many years, even prior to leaving
high school, I’ve had it in my heart to begin a program
such as the one sponsored by the Kidney Coaching Foundation,
in
order to help young people who, like I, have had their
lives deeply affected by kidney disease.”
