My kidneys as drawn in Microsoft Paint

I saw CT scan images of my kidneys today during a visit with my potential nephrectomy surgeon. I was pleasantly surprised when he told me he could laproscopically remove one or both of my kidneys despite their extreme mass. They apparently have some quite-advanced tools for clamping arteries and other intricate tasks involved in the surgery such that they can get the kidneys out through a tiny hole, so no football-sized incision is necessary.

It was nice to have the surgeon validate what I’ve been dealing with–that I’ve had these massive and ever-growing kidneys causing life-altering pain for two decades. A healthy kidney is the size of a fist. Mine start at my ribcage and extend down to my pelvic bone, from my spine to my abdomen.

I was looking at cross-sections of my body in these CT scan images. Here are Microsoft Paint images, if they were done by 5-year-olds…or by me five minutes ago. The white block represents my spine. I don’t think anyone needs to see my lungs or bowels to get my point.

Normal kidneys:

My polycystic kidneys:

The surgeon says I will immediately be twenty pounds lighter when these are removed. I can’t even image what that would feel like. I know it is unfair to compare this to something I will never experience, but I imagine that carrying twins is a little like that (without my breasts and other body parts blowing up along with my abdomen).

I would like to opt for my heavier, more painful kidney to removed rather than both because my kidneys still have some fluid-eliminating capacity. I would love to have this done as soon as possible.

However, I don’t even know how the new employer feels about me working around my dialysis schedule. It would be pushing matters to see if I could work around a one-month downtime to have this surgery. I’ll hope to have this done sometime in the next year or so. Realistically, a new kidney won’t come along for another 2-3 years or so.

On a related note, a hearty congratulations to my friend, expectant father, and former-PKD and former-dialysis patient Rob, who received a kidney transplant early Sunday morning and is doing well!


2 thoughts on “My kidneys as drawn in Microsoft Paint

  1. Congrats to your friend Rob!

    I had seen from pictures when I first looked up PKD in general what polycystic kidneys look like, but had no idea they were that big. It is hopeful to hear about that surgeon’s plan.

  2. PKD kidneys can grow to be as large as 38 pounds EACH! Unfortunately, even after a transplant, we’ve still got PKD. Except for the new kidney, every other cell in our bodies still has that ADPKD1 gene 😦
    Tell Rob I said CONGRATS!

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