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?

Wait Till You See My eGFR!

I hate to brag (no, actually, I’m proud of it!), but today I had my best creatinine and eGFR test results since I donated my kidney to my son 14 years ago. Creatinine reflects the amount of toxins in the blood (lower is obviously better), and GFR is an overall measure of kidney function (the clinical term is glomerular filtration rate). The little “e” before GFR just means estimated. The exact measure requires a 24-hour urine collection, which I vividly remember doing for my donor evaluation.

For the estimate, they use a formula based on creatinine, age, sex, and a few other factors. My creatinine is 0.75 (normal is under 1.00 for females, and mine’s been under 1.00 for about the past 5 years but never this good)! My eGFR is 80 (normal is over 60). To give you an idea, kidney failure–meaning the imminent need for dialysis or transplant–is below 15.

Given that it’s natural for kidney function to decrease as we age, at 72 years old, I would expect mine to be lower. Plus, as a living donor, there’s no cause for concern even if it’s slightly under 60 (categorized technically as “stage 3 of kidney disease”).

Those stages are based on people with two kidneys and/or patients who are continually losing kidney function. So, I wasn’t at all concerned a few years back when my eGFR was 59 but my creatinine was under 1.00.

And now 0.75! So, if you or anyone you know is worried about living donors’ losing too much kidney function, please tell them about my results. (And, no, I don’t have a water bottle attached to me all day, though I’m not knocking those who do.)