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It was early Sunday morning, Lisa was at
church, I was reading the paper in my boxers drinking my coffee,
little Kristin, all 3 years and 35 pounds said “Daddy, I don’t feel
good, I think I may throw up”. I said, “Here, get a throw up pan”
as I went back to my paper…big mistake.
Then poor little Kristin begin to throw up, not
peas and carrots, but red blood, she had a GI bleed, about a big
coke can full. She looked like Linda Blair from the Exorcist. I
sat there stunned, and somewhat in shock…I’m no doctor, but I knew
that something wasn’t right with my little girl.
We rushed to the hospital, all nerves and
wondering what was going on. After a week of tests it finally came
out that she had PKD and CHF, a rare kidney and liver genetic
condition, up to 50% die at birth.
Ever feel like there are is no hope - no
answers and no one to turn it? That was us.
Our doctor said, “I know a guy that might be
able to help you, a surgeon at Emory University”, so off to Emory we
went for their first appointment.
After an initial review Dr. Chiffon said, “I
think I might be able to help you.” It was music to our ears, “she
needs a distal renal splenal shunt”.
What’s that? “It’s a little bit like the operation game” he said,
“reconnecting one vein to another to let the blood flow back thru
the liver”. We said if that is our best option, go ahead. We just
want our little girl fixed.
We were referred to Dr. Thomas Heffron, a world
famous surgeon who has done liver transplants as young as 3 months,
we were 28 or 29 that year his staff mentioned.
The big operation day came in January 2001, we
were as well prepared as anyone could be. Friends and relatives all
lined up, and care for the older 2 brothers were taken care of. It
was an early morning, getting Kristin to the hospital for final
tests.
I remember Kristin’s crying face, crying for
mommy as she looked back, as the nurse pulled her away, down in the
OR with all the green tiles in the back. Dark cold tile, pale green
tiles, way down in the basement, you know the ones. Being pulled
from mom’s arms walking down the pale green hallway, looking back,
reaching out crying for mommy…it was horrible.
Dr. Tom met us in the hallway, he said,
“I will do my best, and God will do the rest”.
The surgery was a success about 5 hours later.
We were on pins and needles the whole time, until the nurse came
out. Kristin spent 3 weeks in the hospital and
Lisa was there 24/7. She finally came home
early February good as new, we were so thankful.
It was only after I became involved with the
ARPKD/CHF, NIH study (what a blessing by the way) did I find out the
failure rate back then was about 40%.
Kristin is now fine and growing up well. She
is 10 years old and loves to play sports and dance. She is growing
up straight and tall with no medical complications, we are most
thankful for all the top medical care we get and continue to
receive.
We have come to help out with the ARPKD/CHF
Alliance, because they spend the most amount of time on CHF. I
personally have gone thru a kidney transplant, I have ADpkd, but in
the end it won’t kill you like CHF will. We are most thankful and
if you ever need encouragement on CHF give us a call.
John Bielefeldt
(ARPKD/CHF Alliance Board Member)
Footnote:
Dr. Heffron is not like most surgeons I know. He is among the most
talented, unassuming, giving back doctors I know. He won’t even
have a beer, because he said “John, I’m the only one in the
southeast who can do this type of surgery, and if the phone rings, I
don’t want a can of beer to be the reason I can’t save someone’s
life”. He does smoke however, I send him Cubans every year.
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