Anyone who’s been reading this blog for awhile knows that I periodically post in frustration about the subject of donors being needlessly upset when their kidney function appears slightly lower than “normal.” It’s usually because their provider has wrongly concluded that the donor thus has stage 2 or 3 chronic kidney disease. That’s not merely my opinion–I have no medical credentials–that’s according to respected medical writings on the subject.
The eGFR (kidney function) scale they’re referencing is relevant mainly for people with two kidneys who may be showing signs of kidney disease.Well-meaning but uninformed providers–sometimes even nephrologists (kidney specialists)–often forget that a healthy donor is probably registering lower kidney function simply because he or she has one kidney.
Donors do lose kidney function, but the remaining kidney gets plumper and takes on some of that burden; their creatinine level (toxins in the blood) may be borderline for a few months but then typically stabilizes at a perfectly acceptable level. Mine, for example, 15 years after donation, is fine even for someone with two kidneys.
I recently heard of other examples of confusion on this point, so it bears repeating: a slightly higher creatinine and a slightly lower kidney function in an otherwise healthy living donor is just fine!
Transplant teams need to do a better job of preparing their donors for the likelihood of their having a “new normal.” Equally important, teams should routinely alert a donor’s PCP to this eventuality from the start–that is, when the donor leaves the team’s care soon after the donation.
Some frightened donors have run to consult a nephrologist, worried that they had developed chronic kidney disease. (I’m not suggesting that there are never instances of a living donor developing kidney disease, but those are rare. We’re talking here about a donor who is in good health and showing no signs of kidney disease.)
In Facebook support groups, even well-informed donors often describe having had to get a letter from the transplant team to “convince” their provider that the donor knew what he or she was talking about.
If even health care providers are not fully informed, is it any wonder that donors–not to mention the general public–are not fully informed about living donation? Given the urgent need for more living donors, our health care system and the kidney community need to do a better job of raising awareness about kidney disease and donation.
For related posts, resources, and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.