the
ki ney
citizen
of Fabry. I knew this day would come eventually; I just
did everything I could to keep my mind off of it. I made
some changes in my life hoping to push off kidney failure
as long as I could.
Right about the time I turned 30 I was notified about
a clinical study for a new enzyme replacement therapy
drug that was being developed for Fabry patients. The
study was being held at Mount Sinai
Hospital in New York City (NYC). I
began to go to NYC from Wisconsin
every other weekend to participate
in the study which I did over the
next several years until the product
was approved by the FDA in 2003.
I think being at Mount Sinai had
the biggest impact on my life. The
clinical study was held in their
pediatric department and I met so
many young children with a whole
assortment of different conditions.
It seemed the children with the most
severe conditions were the happiest.
It was at this time that I realized how
foolish I was when I was feeling bad
for myself and angry when I was
younger. I found out how lucky I had it compared to so
many who were/are dealing with a lot worse.
At about this time in my life I had fallen into Stage 3 of
kidney disease. With receiving the enzyme replacement
therapy, I was hoping to avoid losing my kidneys. In 2008,
I met my now wife, Trinh, and we started dating. After I
told her about Fabry she really didn’t seem to be affected
by it, which surprised me. I had noticed my entire life,
once I told somebody that I had a rare condition, they
didn’t seem to stick around very long. Only two months
after marrying Trinh, I had dropped into Stage 4 kidney
disease and began the process of finding a donor. After
family and friends of mine were tested it turned out none
of them were a close enough match to be a donor. Trinh
went in and was tested in June and it turned out she was
a perfect match. We started making
plans for surgery expecting for it to
occur in late 2012 or early 2013 but
I quickly slid into Stage 5, or EndStage Renal Disease (ESRD), so the
transplant surgery took place in
July of 2012. I am now four years’
post-transplant and things are good.
Trinh is still as healthy as can be
with no issues. The one bad thing
about receiving an organ from your
wife is that I now have to agree with
whatever she says.
I had once heard, “Every curse
comes with a blessing” which I
take to heart as I look back over my
life. I feel everybody living with a
chronic disease will feel that way at
some point through their journey with the condition.
Fabry disease (and all other health conditions for that
matter) is not easy to live with, l but I feel it has made
me the person I am today. I am very optimistic and very
patient. I have empathy for people who are suffering. I
don’t sweat the small stuff, plus many more attributes
that I really don’t know I would have if I didn’t grow
up with Fabry.
7