David's Story
| Clydes Story | Trisha's
Story
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FROM
A MOTHERS PERSPECTIVE - David's Story |
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| David
is our first fitness grant recipient. |
 Funding
for David's grant was provided by Genzyme.
Find out more about Genzyme by clicking
here. |
David is 15 years old
and attends Chaska High School. He lives with his
Mom Dad and sister Paige. I would like to give you
a very brief history of David's illness. When David
was 22 months old, we noticed that his
body was very swollen. We took him to the hospital
and after some tests, it was determined that he
had a kidney disease.
The diagnosis was focal segmental glomerular sclerosis
(FSGS). FSGS is a disease where the immune system
attacks his kidneys. There is no cure and little
is known about how it is contracted. FSGS also has
a significant recurrence rate in a transplanted
kidney. David was put on many different meds to
try to suppress his immune system and slow the progression
of the disease. The doctors tried everything they
could. He even went through chemotherapy twice.
The drugs did slow down the progression, but he
was a suffered severe side effect from them. He
was on high doses of prednisone for many years.
This caused him to gain weight. He was always 30
to even 50 pounds over weight. He struggled with
everyday activities, but still tried to be normal.
He tried to play sports, but would get very tired.
David's life at this time was very crazy. He was
in and out of the hospital almost on a monthly basis.
His blood pressure would soar, because his body
was fluid overloaded. It was getting harder and
harder for him to live a normal life. He would become
so swollen that he could not walk. After nine years
of this, things finally came to a head.
One night he could not breathe, he was put in the
intensive care unit and placed on a respirator.
The next day was his first dialysis treatment. After
three days of dialysis, he lost 50 pounds of fluid.
What we thought was fat, was all fluid. His body
now looked like a bag of bones. He began three times
a week dialysis treatments and slowly began to gain
strength. It was a rough start, but eventually he
got used to the fluid and diet restrictions. After
6 months, he had a kidney transplant from his father.
The kidney worked at first, but then the FSGS recurred
and it stopped after 24 hours. It never did start
working and David had to go back on dialysis.
That was four years ago. Throughout all this, David
has stayed in school and kept his spirits up. It
is a continuous struggle, but is learning that he
still can accomplish anything he wants, it just
may be a little harder than for most.
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| An
update from David |
When I first started
training with Jamie,I did not have much strength.
It was very hard and sometimes I would get dizzy
and weak. Each week I started to get stronger. I
feel more comfortable with lifting weights.
I still don't like lunges! It has been a struggle
for me to keep my energy up. Since I go to dialysis
three days a week and school the rest of the time,I
am finding it hard to keep up my energy. I know
that it is going to take me longer than most and
I am ok with that. I love to flex my new muscles
and am working on a six pack! I think once school
is done and I can work out in the morning that it
will be a lot easier for me. When I first started,
my goal was to play basketball for Chaska high school.
I thought that was my goal,but as I got into the
training,I realized that wasn't really my goal.
My new goal is to first get stronger so I can try
all different kinds of sports and activities. Since
I have never really been able to play any sports
growing up, really want to be able to feel comfortable
playing and participating with my friends. My Mom
says that she has seen me become more confident
since I began this,and to her that is the most important
benefit.
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FROM
A MOTHERS PERSPECTIVE - Clyde's Story |
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| Clyde
is our second fitness grant recipient. |
Funding
for Clyde's grant was provided by Genzyme.
Find out more about Genzyme by clicking
here. |
Clyde Jones
III
This is a story about my son Clyde Jones III. Clyde
is 17 years old and attends Roosevelt High School
in South Minneapolis, MN. Clyde will be graduating
this year in June of 2005. Clyde was born at Abbott
Hospital in Minneapolis, MN on July 13, 1987.
 When
Clyde was born the doctor gave him 24 hours to live,
but God gave him life! Clyde had several things
wrong with him. Clyde’s biggest problem was
that he had a urinary track infection which caused
damage to his kidneys and a blockage in his urethra.
I remember being wheeled into a room where Clyde
was laying after his birth and was told that he
was very sick and was not going to live. I can’t
remember my first impulse, I was numb. I was only
26 years old and was all alone when given this information.
All I could feel was compassion for my son laying
on that hospital bed with his eyes half open and
his breathing very hard. I had never experienced
losing a child after birth so all I could do was
try to keep myself calm. I was taught as a child
to always pray and though I was not acknowledging
God fully during this time, God spared my son’s
life through his doctors. All the doctors that shared
a part of my son’s life were wonderful people
and they did an excellent job by the help of the
Lord.
Clyde’s first surgery was a vestocostomy,
which was a hole in his navel so that he could urinate
from the vesto. Also he was put on a respirator
machine for a month before being released from the
hospital. After six months with a vesto, he was
strong enough to have the major surgery to remove
the blockage in his urinary track. His surgery was
a success, but there was still the urinary track
infection which had already claimed one of Clyde’s
kidneys before he was 1 years old.
Clyde had over 100 surgeries before the age of twelve.
At the age of 12 he went on dialysis for about six
months and later on that year he had a kidney transplant.
After four years the kidney failed and Clyde has
been on dialysis ever since. Clyde does not like
to be on dialysis, but has accepted the fact that
he is different.
Clyde is funny, he loves sports, and he loves the
Lord. He loves his family, and his family loves
him. We are a close knit family and we just take
a day at a time depending on Jesus. We have had
some frightening moments, like the kidney transplant
surgery, and when it failed, but we’ve learned
to put all trust in God. In God we trust, so Clyde
is not alone. When he feels pain, we feel pain.
When he hurts, we hurt. We draw our strength from
one another. We always laugh and try to keep joy
on the inside of our being. We love each others
company as a family. When Clyde gets sick and has
to go to the hospital, we all go with him and stay
all night and day if we have to. We are with him
and God is with us.
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Trisha's
Story |
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| Trisha
is our third Fitness Grant Recipient. |
 Partial
funding for Trisha’s fitness was provided
by Defined Fitness.
Find out more about Defined Fitness by clicking
here. |
Funding
for Trisha’s grant was provided by Genzyme.
Find out more about Genzyme by clicking
here. |
 My
name is Trisha Clarke and I am 30 years old. I
have been on dialysis for almost 4 years now.
I live in Albuquerque, New Mexico with my husband,
Adam, and our daughter, Catie. We have three dogs,
Samantha, Sara, and Farley - we also have a fish
named Sam.
Let me start by saying that I had no idea I was
even the slightest bit ill until I went for my
yearly checkup in July of 2001. It took two months
for me to finally be able to see a kidney doctor
and by that time I was starting to gain weight,
which I later found out was almost all fluid gain.
I will never forget the day everything happened
- it was, ironically, September 11, 2001. I went
for an ultra sound of my kidneys. The very next
day I was in the hospital for a biopsy.
I found out that I didn't have Lupis like doctors
thought but I only had about 10% kidney function.
All-in-all, not the best news, but it could have
been worse. Naturally I was given all of my options
and I originally decided to do home dialysis through
a PD catheter but because of complications I was
forced to start hemo dialysis. That was almost
4 years ago and I feel that, except for an adjustment
period, my family and I have come to regard dialysis
as just another part of the schedule. I have applied
for the fitness grant because even though I don't
feel like dialysis has slowed me down too much,
I have noticed that I do have a harder time keeping
up with my daughter than I used to. Also, I have
noticed that I have lost quite a bit of the muscle
that I used to have. I also think that just because
I have kidney failure there is no reason to let
it define me - kidney failure is what I have,
not who I am.
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| An
update from Trisha |
I thought I would
take a few minutes to write you and give an update
on everything that is going on here. Let me see,
I have been going to the gym for about two months
now, and I have become one of those people that
I used to make fun of for always going to the
gym. I'm not sure when it happened, but now I
LOVE to go and work out, crazy but true. A couple
of weeks ago I decided to take part in the upcoming
marathon for the New Mexico Cancer Society in
October. I am really looking forward to participating.
I know that my doctors are excited for me. Also
because of the fitness grant I am able to work
out with a personal trainer, her name is Kay Garza
and she is wonderful. I couldn't have done any
of this with out her, so I want to send a big
THANK YOU out to you Shad.
A couple of weeks ago I decided to go back to
work. I got a job as a server in an up-scale restaurant,
and I have to say I feel great. I think that it
is a combination of getting back into shape and
deciding that I still have something to contribute.
I now have an extremely packed schedule, it is
taking some juggling, but I have the support of
my family and friends and I would be lost with
out them.
I think that about does it for now, so I will
keep you posted on my progress and I will send
some pictures from the marathon. Thanks again
for everything.
Trisha Clarke
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