Another view of 'the twins'

Ever since I first met my surgeon and informed her blithely "I'd also like to have my native kidneys taken out," we seem to have been on either side of a line in the sand, protocol-wise.

I'd already revealed myself as a nephrectomy advocate, so she had to take on the role of dissuading me from this course. If only 1 out of 20 patients has a nephrectomy -- and my pain hadn't begun yet -- it was unlikely she'd be doing one on me.

Thus, through poking and prodding my abdomen (which, from ribs down to hipbones at any longitude bounces right back like a couple of leather bags full of water) she determined my kidneys are only "moderately large," and has said several times "Your kidneys really aren't that large. I don't know why they'd be causing you all this trouble."

With the onset of pain and the MRI results, she agreed to remove them, but still didn't sound particularly convinced.

However, at my pre-op meeting, Randy and I were briefed by a specialist we'd never met before. My surgeon runs late on a regular basis, between operating, teaching, doing research, meeting with committees that do everything from hiring to reviewing transplant candidates, and last but not least keeping clinical appointments.

The new guy, with a pronouced Georgia accent, was catching up with my history on the computer, when he saw I had PKD. "Hey! Did you have any imaging done? I love looking at polycystic kidneys!"

I admitted I had an MRI somewhere, and he found it. "Wow! These are huge!" he enthused.

Startled by this new viewpoint but still tentative, Randy offered that we referred to them as "the twins."

"Oh, these are bigger than babies," the doc said. "I've sired babies, and these are bigger than that."

Not only was the horsy reference delightful, the confirmation of what I'd always thought was encouraging.

We then delved further into his Southern past. "You know rugby balls?" he asked. (We both nodded, even though we have only a sketchy idea of what a rugby game looks like, much less the ball.) "Well, these are the size of rugby balls," he said.

Looking up "regulation rugby ball" and converting centimeters to inches yields some startling statistics. All I can say is I'm ready for them to bounce on out of here.

The most unwelcome question

We were on vacation at my parents' cottage -- "heaven," as people who've been there call it -- and were escaping from a noonday June sun on the beach by driving to the nearest town to shop.

The cottage is a place where outside worries just don't penetrate. We have no daily papers and no TV. One summer, we noticed the neighbor's flag was at half-staff one morning, and thought, "Oh, that's too bad -- the World War II veteran who lives there must have died." But when we went into town to post some mail, the Post Office flag was at half-staff, too. When I asked the woman behind the counter why, she looked at me like I'd fallen off Mars and snapped "President Reagan died!"

So, with only trivial issues on the agenda, such as "Will it be sunny again tomorrow?" and "What should we have for dinner tonight?" I was miles away from thinking about my health problems. I was completely unprepared when a woman smiled sympathetically at me and said "I can't imagine what it would be like to be pregnant in this heat."

She seemed kind, and I had been in a sunny mood until then, so I just smiled back and said "I'm not pregnant," and let the shock and the oh-I'm-so-sorrys fall where they might.

Thankfully, back home in Minnesota, I'm generally surrounded by people who, as Garrison Keillor has portrayed them, are almost too cautious to pry into how you take your coffee. That's just as I like it in any case -- I just don't think whether or not I have a passenger on board is a passing stranger's business.

I can certainly appreciate the fact I don't look "normal". Out of curiosity, I recently tried to calculate my pants size on a store's Web site. Thighs: size 10 or 12. Hips: size 10 or 12. Waist: size 24. Even at that, I had to do some extrapolation to arrive at the waist size -- it was literally off the chart.

So, yes, I am bizarrely shaped, suggesting pregnancy, a serious beer addiction or, of course, being one of the roughly 300,000 women in the U.S. with PKD.

I've run into such well-meaning strangers a few times before, as have others. One woman told me she had to start wearing maternity clothes at age 48. And, at that, her primary physician's nurse exclaimed excitedly on seeing her, "Oh! How many months are you pregnant?"

I'm sorry, really? At 48? You're holding her medical chart with "PKD" all over it in your hand?

For me, it's embarrassing, humiliating and maddening in varied proportions. My first thoughts are of snapping back in a way that would prevent this person from asking that question ever again.

But I don't. Counting blessings again, I'm fortunate in not wanting to have children. There are women out there -- apparently in less-introverted regions -- who have PKD, huge kidneys and risk pregnancy reminiscences and belly rubs every time they leave the house. "I started getting an enlarged abdomen about 5 or 6 years ago when I was in the throes of infertility treatments," one wrote on a forum. "Imagine being infertile and desperately trying to have a baby and being asked all the time "when are you due?" I remember replying 'Never! I will never be due because I can't have kids!' and bursting into tears."

Are there many people left out there besides older, nosy relatives who haven't heard "Don't ask a woman if she's pregnant unless you actually see another human being coming out of her"? (May I add: in that rare case, you might as well save your breath for calling 911.)

My husband says it's about people wanting to share the experience by proxy. Whatever the motivation, these thrill-seekers should be warned that there are a few of us ringers out here who, depending on the day, may share more than the experience you expect with you.