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This
is Trey's Story
I was diagnosed
with FSGS five years ago when I was thirty-six.
My first child, Ava, was just two years old.
I had noticed that my urine was foamy but didn’t
think anything of it. When my legs started to
swell, I told a physician friend. She told me
to go to the emergency room right away. Since
I was spilling a lot of protein, the doctors
gave me a high dose of prednisone. The prednisone
didn’t help so they gave me a biopsy and
discovered that I had FSGS, the collapsing variant.
Very soon afterwards, my edema got so bad that
I had to wear compression stockings. I had to
put them on as soon as I woke up, otherwise it
would feel as if my toes were going to explode
like sausages. I was also severely anemic, merely
standing up threatened to make me faint. I got
sick often, suffering through fits of vomiting
and diarrhea. I lost lots of muscle mass and
gained about twenty pounds of fluid.
My nephrologist,
Dr. Saleh at UCLA, was amazingly compassionate.
Thanks to him, I never lost hope. For two years
I was ill, but relatively stable, taking steroids,
Neoral (Cyclosporin), Cellcept along with an
ACE inhibitor, Lipitor because my cholesterol
was off the chart, folic acid, iron and weekly
injections of Procrit to combat the persistent
anemia. Dr. Saleh also suggested L. Arginine,
an amino acid. I did some research on my own
and started taking Fish Oil and Vitamin E every
day because I’d seen that they had helped
some people and in the right doses they couldn’t
hurt.
When I was
applying for disability, the investigating nephrologist
at Cedars-Sinai in Los Angeles suggested that
I contact his colleagues Dr. Jordan and Dr. Moudgil
because they were doing some trials on new treatments.
They were particularly interested in finding
if the Parvo virus triggered FSGS and if high
doses of gamma globulin (IVIG) could treat it.
I tested positive for the parvo virus (which
is fairly common, I’m told). The researchers
convinced my insurance to cover the $30,000 it
would cost to give me IVIG over the course of
a week or so.
I was particularly
keen on doing anything I could to get better.
My dad had FSGS in the 80’s and was given
several blood transfusions because of anemia.
It was because of one of those transfusions that
he contracted AIDS. His kidneys failed and I
helped him through peritoneal dialysis at home.
Eight months later he died of AIDS complications.
I have been
a fairly successful novelist and screenwriter
- I wrote the screenplay for the HBO movie, The
Tuskegee Airmen - but since I’d been sick
it had become very difficult to continue working.
The steroids especially made it very hard to
concentrate. I was tremendously excited when
I began my IVIG treatment. Dr. Saleh had told
me that he had once treated two patients with
very high doses of IVIG and they went into total
remission. He said, however, that it was so expensive
that he could never get insurance to pay for
it again.
The doctors
at Cedars wanted me to stop the Cellcept while
I took the IVIG. Dr. Saleh disagreed and thought
that the IVIG needed all the help that it could
get, but for the purposes of this experiment,
I followed the orders of the doctors at Cedars.
At the time, my creatinine was a little high,
but my proteinuria (protein loss) was massive.
After the course of IVIG my proteinuria started
to drop and drop, but my creatinine rose.
A few months
later, the excess fluid started leaving me by
the kilo (I was on the toilet a lot!) and suddenly
I could see the muscles in my legs again! I have
never, ever been so relieved. I started going
back to the gym, back to yoga and now, three
years later, I’ve never felt in better
health. I still take the same meds every day
but my protein loss now is minimal. I’m
told that I could remain stable like this for
years and years.
My story has
been wonderful, my daughter Ava’s, less
so. Two years ago, after she had a bad case of
the flu, I woke up to find her beautiful, beautiful
face hideously bloated. I didn’t dare guess
why, but her pediatrician tested her urine and
she was spilling a lot of protein. It broke my
heart. Luckily, however, unlike me, she is amazingly
responsive to steroids. After two or three days
of taking prednisone, her urine is protein free.
My son was
born two years ago and he’s fit as a fiddle.
Like every
other family with FSGS, we’re waiting for
a cure.
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