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This
is Melanie's Story
Hi, my name
is Melanie Stewart. I am 17 years old and have
been battling FSGS since I was seven. For the
last ten years I have experienced many ups and
downs from having FSGS, but having a kidney problem
has not taken away my ability to have a life
separate from the hospitals, needles and doctors.
When I was seven years old,
I started to wake up with the normal symptoms
like puffy eyes and tiredness, but by the time
I was out the door for school I looked normal.
This would happen daily, but my parents just
thought it was “sleepy eye”. In March of 1995
I went to the doctor for a visit because I had
strep throat and my mom mentioned that I had
been waking up with puffy eyes. There in the
office the doctor did a urine test and found
that I was 4+ protein in my urine. The next day
I went to the Nephrology unit at Children's Hospital
of Philadelphia .
For the next few years I was
put on many different medications to try to put
the Nephrotic Syndrome into remission, but none
of them helped. One of the worst experiences
was having to go to the hospital three times
a week to have 750mg of IV prednisone pumped
into me. I was so swollen that sometimes you
could not see my eyes. I have pictures from the
time and when I see them I want to cry because
of how I looked.
By October 1997, when I was
10 years old, my kidneys were not working and
I was put on Peritoneal Dialysis (PD). On April
21, 1999 , my dad gave me one of his kidneys,
but the two years after the transplant were some
of the hardest. I had apheresis procedures done
three times a week and the high doses of immune
suppressant drugs caused PTLD (post-transplant
lymphoproliferative disease), a type of cancer
of the lymph system, to form on my head. In November
of 2000, I almost died because of a blood infection
and a blood clot in my heart caused by the apheresis
catheter.
In March of 2001, the kidney
was removed, I was put back on PD and forced
to start over again. Life was basically back
to “normal”, but because I had been on PD before
the wall lining that is used to take out the
excess fluid and toxins had started to wear.
In May of 2003 I had a fistula put in my arm
so I would be able to do Hemodialysis. Fortunately,
I am in a unique situation and am able to do
the Hemo only once each week and the PD the other
6 nights of the week. It works out really well
for me and I do not know what I would do if I
had to have Hemodialysis done three times a week.
As of right now, I am not really waiting for
a kidney; I have been down that road and did
not like what happened to me. So my plan is to
wait at least until I graduate from high school
to have another transplant.
Even though I've been through
some hard times with FSGS, I have always had
a very upbeat attitude and never let anything
get me down. I think my reasoning is this: I
can not change my situation, so why dwell on
it? I feel that I am in a situation where I can
do something to help others. That is why my family
and I have worked with The NephCure Foundation
since it started. For the last few years, I have
gone to Washington , D.C. to talk with Congressmen
and Senators about FSGS, my experience and the
need for more research. Two years ago, I testified
before congress. Also, my family and I have held
two fundraisers, the first fundraiser we had
was a “Beef and Beer”, which raised $7,000, and
the second was a Frisbee golf tournament with
an after-party which also raised over $7,000.
As a member of The NephCure Foundation's Philadelphia
Chapter, I go to the meetings and participate
in any chapter activities and actively work on
our phone and ink jet cartigage donation program.
I feel that because this is such a rare condition,
everyone with FSGS and Nephrotic Syndrome should
come together to help find the cause and cure
for these awful diseases. You do not need to
do much. Start a chapter in your area, organize
a fundraiser, become a member, get the word out
about FSGS and Nephrotic Syndrome or what ever
you feel will help.
In December 2005, Melanie was accepted into the West Chester University Nursing Program! Congratulations from all of us here at NephCure!
Read more about her graduation, here.
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