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This
is Daisy's Story
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We decided
we would like to share our story for a couple
of reasons. One is so other parents of children
with FSGS could see they are not alone. Another
is to get people aware of what this disease does
to the patient as well as the family.
Our five year old daughter, Daisy, was waking
up with swollen eyes in June 2003. We took her
to her pediatrician who diagnosed her with Nephrotic
Syndrome. He sent us to see a Nephrologist the
next day. We began a six week therapy treatment
of Prelone, doctor visits every week, as well
as blood and urine tests. After about one week
she responded, but this did not last long. Her
protein level started rising into the 2000 range
and she was having blood in her urine. After
five weeks of trying to see if she would respond,
her doctor decided it was best to do a biopsy.
On August 6, 2003 Daisy had her biopsy. This
was a very stressful and emotional day for all
of us. It was very hard to walk out of the room
when they put her to sleep. It took about two
weeks until we got the results. My husband could
not get out of work, so my boss took me. I was
very anxious to find out what the results were.
The doctor said to me, “You may not want
to hear what I have to say to you, but your daughter
has FSGS.” My heart sunk and I remember
holding back my tears. I had done research on
the web and I knew this was not good.
Things from this point got worse for us. We were
in a terrible financial situation and were forced
to sell our house. Daisy came down with pneumonia.
We started two new medications, Neoral and Malenate,
along with the Prelone three times a day. Within
the first month of therapy she went into remission
for five months. In April 2004 she relapsed for
about two weeks and in late June she relapsed
again. She is now having trouble fighting this
one back into remission. The doctor tells me
he can’t increase the Neoral anymore and
if we do try to increase the Prelone, there is
a good chance it just won’t work again.
He tells us we should count our blessings that
her kidneys are still functioning so well.
 We
try so hard to be strong for her, but there
are times it's difficult not to break down. Daisy
is having side effects, such as increased hair
growth, mood swings, lack of appetite and the
worst is joint pains in her ankles that are
so
bad they make her cry.
We are very
thankful that we have two great doctors. We are
also grateful
that my boss
is very understanding
when I can't make it in to work. But we are
most grateful that we still have our only
child in
our lives.
I asked my daughter a few questions to get
her to share her thoughts on how she feels
about
her kidney disease. This is what she had
to say: “I’m
used to the blood test. The doctor makes me happy
that he is helping me. My medicines are yucky!
I love salty food and want more than anything
a Lunchable, but I know I can't. I worry that
my kidneys won't work and I'll be in the hospital
for a very long time. I'm scared of chicken pox.
And never want a big needle in my leg like last
time I got sick.”
If you would like to get in contact with
Christina and Daisy, please email info@nephcure.org and
we will direct your email to them.
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