November 21, 2009
UTNE READER

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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