Zooming into DC for a Unique Virtual Kidney Patient Summit

Instead of flying to Washington, DC, in March with other advocates for the National Kidney Foundation Kidney Patient Summit as planned pre-COVID, we Zoomed and Hopped in last week for virtual meetings on Capitol Hill. Admittedly, virtual was less of a kick than the real thing, but it was surprisingly effective in garnering cosponsors for important pieces of legislation.

I was excited to meet with members of Congress and/or their legislative staffers to share my personal story of donating to my son and to explain the importance of a few key pieces of long-overdue legislation: the federal Living Donor Protection Act (S511/HR1224), which prevents insurance companies from discriminating against donors (I’d earlier met with my state legislators about a state version); the Immunosuppressive Drug Coverage bill (S3353/HR5534), to safeguard a kidney recipient’s precious transplant by continuing coverage of antirejection meds for the life of the transplant, instead of cutting it off at 36 months for recipients not otherwise Medicare eligible.

Given that chronic kidney disease is so widespread–about 37 million Americans have it–and underdetected–the vast majority of them don’t know it yet–we’re also asking for funds for a new Kidney Risk Campaign.

“Are You the 33%?” is a simple quiz to help raise public awareness that one in three people in this country is at risk for kidney disease. Actor/advocate Wilmer Valderrama is helping to spread the word in both English and Spanish. The risk is particularly high among African Americans and Hispanics.

Perhaps the highlight of our eight meetings was the one with my long-time congressman, Rep. David Price, who has been very supportive of the kidney community. He’s been a cosponsor of the Living Donor Protection Act for a long time and just agreed to do the same for the Immuno Drug bill! If there’s an appropriations bill before year’s end, he was also receptive to supporting the Kidney Risk Campaign funds.

Here I am meeting with Rep. David Price, his legislative director, Nora Blalock–thank you both!–and my fellow NKF advocates.

I learned a lot and “met” a lot of interesting, extremely dedicated people, like my joint North Carolina-Georgia teammates pictured here: Stuart Miller (a transplant recipient who led our group) and Cara McKinney (NKF’s exec director for Georgia, Alabama, and Mississippi) from Georgia; and, from NC, Michael Phillips, a transplant recipient who survived COVID (sadly, 20 of his relatives also contracted it); and Chris Rusconi, chief research officer for the Polycystic Kidney Foundation, a fellow Triangle resident.

We raced from meeting to meeting by catching a Zoom. It was hectic but very gratifying (and my feet didn’t hurt one bit!). Afterward we compared the day’s highs and lows with other advocates. It all definitely whet my appetite for repeating this experience in person someday.

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.)