My Cure is Killing Me
(Page 8 of 9)
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I have had Inge's kidney since 1998, when a 10-hour operation
attached her renal artery and vein to my iliac artery and vein and
pierced her ureter through my bladder's wall. After flushed of her
blood, the pale organ was placed in me, turning crimson with my
blood and producing urine almost immediately, in tune with the
tears my family shed in the waiting room. Four days after surgery,
I was discharged, a mass of tissue - still more Inge's than mine -
slowly settling into my pelvis. Within two months, I was in Berlin
on a Fulbright Fellowship, at the end of which that kind nurse,
Schwester Astrid, handed me my Wundertute, a goody bag of
immunosuppressants that would last me six months. How I miss the
full, easy coverage of the German system, where there are no
pre-existing condition clauses or multiple categories of physical
and financial need. Upon my return to New York from Berlin, I once
again confronted our dilapidated patchwork of providers, a system
that spends more than any other country to underserve millions.
Though I was unemployed and sleeping on a friend's couch in Harlem,
Medicaid denied me, saying that, to be eligible, I could have
assets of only $3,250 and earn no more than $600 a month. I
exceeded those limits and had no intention of spending down just to
qualify for welfare.
So I am back to my old ways, which I thought I would be able to
abandon after the transplant. I rely on samples and other
(presumably dead) patients' supplies. My friends in Spain still
send me pills. I'm not alone, of course. 'When I found out how much
the drugs cost, I wept,' Debi Surlas, a 46-year-old transplantee
and registered nurse from Illinois, told me. 'I told my husband to
forget it. I wasn't going to have the transplant.' With his
encouragement, she had a kidney and pancreas transplant seven years
ago. But with an HMO that doesn't cover medications, she has spent
a whopping $60,000 of her own money on drugs.
Then there's Luz Vazquez from New Jersey, who had her kidney
transplant seven years ago, at 33, and now lives from paycheck to
paycheck. When I called her recently, she had enough medication for
five days. If she didn't get more, her kidney would become a time
bomb of potential rejection.
'The system sucks,' she said with a familiar resignation. 'It's
either the rent or my medicine.' Medicaid covered her for a year
after her transplant, but then she began waitressing and was too
flush to qualify, and has been without insurance since.
I, too, have had to choose between financial and physical health.
In Germany, my blood tests were covered, and my one potential
kidney rejection was detected and treated before it became an
emergency. I should have blood tests every month to monitor my
kidney function. But since these tests cost about $400 each in New
York, almost as much as the rent I was paying, I did without when I
returned here, never knowing whether a headache was just that, or a
sign of something worse.
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