A Future for a Kidney
Transplant from Closed
Doors: A caregivers’
perspective
By Emily Moore
I became involved in the kidney community at 8 years of age,
when I began helping my mother who had kidney failure from
Hemolytic Uremic Syndrome ( HUS), a rare disease. I learned
from a young age how to set-up and run the NxStage home
hemodialysis machine. My mom fought her kidney failure
with everything she had. She passed when she was 34 years
old, and I was 13 years old.
Lana Schmidt, who knew my mother and me, called me
3 years after my mom passed and invited me to come to a
kidney support group meeting and show people how easy it
is to set up a home hemodialysis machine. After that, Lana
offered me a job being her caregiver, helping her do dialysis in
her home. I was thrilled but nervous, since it had been a few
years since I had operated or even heard the hum of a dialysis
machine. Hearing the familiar heartbeat of the machine, my
passion for being a caregiver was ignited once more.
I have been helping Lana for almost 3 years now. The
moment I was not prepared for was the moment I had to
tell her that she had to stop fighting. The fight was killing
her. A dialysis patient has two options when battling his/her
disease, to fight or give in. Lana spent 13 years fighting her
disease, making the point to not let it get the best of her. She
fought me hard in my strong opinion, not wanting to accept
it. She began to develop a bitter attitude, knowing her health
was deteriorating.
Locked Door
From the beginning, major transplant centers said it would
be difficult for her to find a match. She was not able to
undergo desensitization, which removes the antibodies from
the blood. Lana had over 100% antibodies from having more
than 20 blood transfusions. Against all medical knowledge of
her being able to get a kidney transplant, she still believed
she would receive a kidney.
Searching for the Key
In April 2013, she met Dr. Benedetti at the University of Illinois
transplant center in Chicago, where he said he could help her
using an orphan drug soliris/eculizumab that would suppress
the antibodies and prevent rejection. He was willing to use a
deceased donor as an experimental transplant. The problem
was she needed $110,000 for the drug, knowing Medicare
would not cover it because it was not FDA-approved for
kidney transplants.
Lana was frantically trying to raise the money and after an
exhausting nine-month journey of asking for donations, she
knew her time was running out. She decided she would try
to contact the head person at the State of Illinois Medicaid
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