Neither a borrower nor a lender be

I have polycystic kidney disease (PKD). Caused by a dominant allele on an X chromosome, the kidneys (and eventually, the liver) develop water-filled cysts over time. The cysts do not push kidney and liver tissues out of the way; they replace tissue, cell for cell. The cysts can be removed or nuked out through chemo- and radiation therapy, but empty holes left in their place. There is no cure, other than transplant.

My children will watch me die a slow, painful death, years before anyone really should, unless something can be done about my condition. I have already taken steps to help myself. I was already a non-smoker, and I rarely ever drank to excess, so it was easy to quit alcohol completely. I cut back my caffeine intake dramatically to the occassional Pepsi, limited to one per "event." I eat more vegetables and fiber, had minor surgery to help me get off certain medications, and tomorrow will begin a new gym membership with the help of my oldest daughter in order to shed about half my total body fat (there's more here than I thought!). Without a transplant, however, I will still die of kidney failure, if my bad driving doesn't take me first.

My sister, who does not have the allele, called me last night. We talked about our father and his sister, who are in advancing and end-stage renal failure, respectively. They are in their early 60s, just a few years older than their mother was when her kidneys failed. My aunt is in far worse shape, requiring dialysis in her home every night. My father, who is older but took better care of his health, is only just starting to "head south."

Sister told me that Auntie is on the list for a transplant. This surprised me, because Auntie did nothing to adjust her ways once diagnosed nor after her dialysis treatments began. I assumed there were standards for this as well as age limits, but we learn new things every day.

Sister then told me that Auntie was in fact offered a transplant this summer, but turned it down. I asked if Auntie was examined by a mental health professional, and Sister explained that the kidney came from a deceased HIV patient. I replied, "So?"

The conversation went something like this:

Sister: Um, hello... It's AIDS. That'll kill you.
Me: And the PKD means you're gonna live forever? How long does she want to live, anyway? She's already 60.
Sister: What do you mean?
Me: Look, it's easy. At my age (35), taking that particular kidney would be stupid. But at 60, I'd only have 20-ish years left anyway; no one in our family has lived past 84.
Sister: But you'd get AIDS.
Me: They've got drugs for that. There's no other cure for PKD. What are you gonna choose?

And so I started thinking. What would I really choose? If my kidneys failed today, I'd have at most about 15 years left on my life if my body does not reject the dialysis intervention. Dialysis isn't easy, fun, or fast. A transplant would be the best choice.

But what about that AIDS kidney? According to CDC studies done after the introduction of successful "drug coctails," if I were diagnosed with HIV today, I'd have 11 years before onset of AIDS, and six years after that. Well, provided my treatment regimen was well-tailored to my biology and that I stuck to it with extreme determination.

Sixteen years without near-crippling dialysis in exchange for HIV/AIDS. I dunno. Seems like a good trade, if the kidney's former keeper was only HIV-pos. I'd be dead anyway, and those HIV/AIDS years are just averages. I could last longer than 16 years.

Try not to let that thought keep you up at night!