No, No, Living Donors–Don’t Think You Have Kidney Disease!

Every few months, I hear about living kidney donors who are worried about their recent diagnosis of “stage 3 kidney disease.” Sounds scary. The first time I heard that, several years ago, I was upset at the news, which seemed to be very common. Until I read further and learned that these donors were apparently healthy and, most important, their creatinine level (a fairly reliable indicator of kidney function) was just fine. In other words, they absolutely did not have kidney disease.

That’s when I learned about the misleading logic of this “diagnosis.” Their providers were basing their diagnosis solely on an indicator (GFR) conceived for people with two kidneys. When you have only one kidney, it’s expected that your creatinine (a measure of toxins in the blood) may be higher for awhile, maybe even permanently, but usually settles back down to a respectable level. (Wait till you hear about mine!)

What if it stays at a higher than “normal” level? If it’s stable and there are no other signs of kidney disease, that’s just their new normal. Not to worry. Please don’t take my word for it–I have no medical credentials–but I trust what I read on the topic in respected medical publications.

As a healthy, proud living donor–and a donation advocate–it really bothers me that living donors are being needlessly frightened by their well-meaning but uninformed physicians–even some nephrologists. At a time when we still need more living donors and want to encourage people to consider donation, it just adds to the misinformation about living donation.

So I raise the subject here periodically and in online support groups. But that’s when I wish that my little bully pulpit were a lot bigger. I keep thinking–if only someone like Nicholas Kristof (the award-winning journalist is one of my long-time heroes), would take it on as a campaign to educate not only the public but the medical community. Wouldn’t that be a great way to honor National Kidney Month?