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This
is Amanda's Story
Amanda Stewart
was normal, healthy, happy 8 year old little
girl, who spent her days going to school and
teasing and playing with her siblings: her identical
twin sister and ten year old brother. All this
changed in April of 2002. On April 1st, after
the family's bout with the flu, Amanda had Nephrotic
Syndrome and through a biopsy was diagnosed with
Minimal Change Disease. No one really knows what
causes this condition or how people contract
it, but they typically respond to standard steroid
therapy to put it into remission. Amanda did
not prove to be typical.
Amanda not
only did not respond to oral steroids, she was
resistant to IV steroids, and highly sensitive
to the toxicity. In May 2002, Amanda began experiencing
seizure symptoms of dizziness and vision problems.
These symptoms were not initially recognized
and soon progressed to full blown seizures and
swelling on her brain. Amanda was care-flighted
a second time to Packard Children's Hospital
at Stanford University with her mom, Tracey.
Her two siblings stayed behind with their grandparents.
Over the next several months Amanda was treated
with highly toxic medications (in laymen's terms: "they
threw the kitchen sink at her"). She spent
every other week in the hospital for pain management
and the attempts to stabilize her until she would
go into remission. Remission never occurred.
By October
2002, seven months after the initial diagnosis,
Amanda's disease became life threatening and
she was constantly in pain. As a result, it became
necessary to remove both of her kidneys - both
of her kidneys were found to be very scarred
with Focal Segmental Glomerulosclerosis (FSGS)
. A child's kidneys are usually 4 to 5 cm, and
would be removed from two small incisions made
in the lower back. Amanda's by this time were
now 12 cm each. In order to perform the procedure
safely, it became necessary to make an incision
from the bottom of her rib cage to below her
belly button for the removal of both kidneys.
 Amanda no
longer experienced the terrible pain that her
kidneys were causing. She had to have a catheter
placed in her chest (her second), and received
hemodialysis three times a week for four hours.
Dialysis made her sick, dizzy and gave her headaches.
It was difficult for her to eat, and almost everything
was off limits because she no longer had the
kidneys to process them. Amanda was very malnourished,
due to the effects that the disease and medication
had on her body. She had to re-enter the hospital
to be placed on a feeding tube. Amanda did go
in for another surgery the end of January 2003,
to place a peritoneal catheter in her stomach.
This made is possible for Amanda and her mom
to return home to Amanda's siblings, her school
and her home, where here mother performed dialysis
on her every night while she slept. Amanda then
returned once a month to the Stanford Children's
Hospital for her clinic appointments until her
scheduled transplant date a year later. A family
member will be the donor.
After several
months of dialysis at home, Amanda's transplant
date arrived. She was to receive a "steroid-free" kidney
transplant. This kind of transplant was an experimental
procedure, considered to be in the pioneering
stages. It would have allowed for a better quality
of life for Amanda than had presently been available
to kidney transplant recipients. However, being
that little was known about FSGS, there was the
concern that the disease may return and attack
the new kidney.
 Amanda's transplant
went as scheduled on Monday, February 9, 2004
and took approximately 8 hrs. Unfortunately,
Amanda has not fared so well. Two days after
the transplant she had to go back into emergency
surgery and be "reopened" for a biopsy.
Her urine had stopped and the labs were way off.
The tests had been inclusive. One of the possible
causes was the return of the FSGS, the disease
that destroyed her own kidneys. Amanda had several
blood transfusions, plasma faresis daily, and
was hooked up to numerous wires, tubes and catheters.
The reopening of the incision for the biopsy
started the healing process all over. Needless
to say, she was in a lot of pain and was very
emotional and agitated. Her mom has run the gamut
from overwhelmed to numb and back again, but
they are both strong and the bond between them
is incredible; they are a source of strength
to each other.
Amanda's doctors
would perform another biopsy to determine if
she has recurrent FSGS. It looks to be inconclusive,
but the opinion of some of the doctors at Lucile
Packard Children's Hospital at Stanford was that
she does. If she has a recurrence, it will be
only the second case of it at Packard. We obviously
hope this will not be Amanda's diagnosis.
 Amanda still
continues to get prophylactic treatment for the
disease. The treatment itself is rare and not
used very often. Amanda is very carefully monitored
during these treatments, and experienced nurses
are being trained and supervised on its methods.
Tracey is so grateful that Amanda has been under
the care and specialty of Lucile Packard Children's
Hospital and the doctors who care for her.
Amanda has
had the fight of her life, and it isn't over
with. We hope and pray that Amanda will not have
to endure much more discomfort, but success,
instead. We have continued hope that she will
return home soon. If you have any questions,
thoughts or comments please email info@amandas-story.com and
visit Amanda's web site at www.amandas-story.com.
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