Powerful Push to Promote Public Awareness of Kidney Disease

I’ve long been amazed and frustrated that most people know little about kidney disease and are unaware of the public health crisis: nearly 100,000 people in this country are waiting for a kidney from a deceased donor, and most will wait several years. For many, that’s too long, and thousands die every year because they didn’t receive a kidney in time.

That lack of information is widespread and includes educated, otherwise knowledgeable, well-informed people. Most of the 30 million-plus people in this country with chronic kidney disease don’t even know it yet, so if people paid more attention to their kidneys, and healthcare providers focused on early detection, kidney disease could be treated before it reached life-threatening kidney failure. Just think of the thousands—maybe millions—of lives that could be saved!

That’s why I was very excited to learn that the public awareness part of that amazing kidney health initiative just got some real teeth. The National Kidney Foundation (NKF) is forming an important partnership with the Department of Health and Human Services (HHS) and American Society of Nephrologists (ASN) to promote the Public Awareness Initiative portion of what’s officially called Advancing American Kidney Health initiative. 

Did you know that one-third of Americans are at risk for developing kidney disease, not only because of diabetes and high blood pressure, but also cardiovascular disease, obesity, and family history of kidney disease? For certain groups, particularly African Americans and Hispanics, the risks are especially high: African Americans are three times as likely as whites, and Hispanics nearly 1.5 times as likely as non-Hispanics, to develop end stage kidney failure.

Even for people who are not at increased risk, my family knows well that our kidney health should never be taken for granted. If you read my son’s post on this site on the anniversary of his transplant, you may recall that he developed his kidney disease from a lingering strep infection. He was young and otherwise healthy, but 5 years later he was on dialysis, and 2 years after that, I gave him my kidney.     

The collaboration by HHS, NKF, and ASN will provide education about the risks of kidney disease and promote the early detection and management of kidney disease to improve patients’ results.

 For more information on the partnership, the Initiative, and kidney disease in general, read the complete announcement here.

Still Walking after All These Years

Another Triangle Kidney Walk date is approaching: Sunday, November 17, in nearby Durham, NC. My husband, son, and I (our daughter’s up in Brooklyn) will be there as usual. We’ve walked in more of them than I can count: three or four recent National Kidney Foundation walks starting at the present Durham Bulls Ballpark location; maybe another four or five NKF walks in Research Triangle Park, which wove through the campus of my long-time employer, RTI International, often a sponsor; plus a few Kidney Kare run/walks in Carrboro, NC, sponsored by the University of North Carolina Transplant Center.

Just a small sample of my collection of tee shirts from many years of Kidney Walks in North Carolina.

We’ve walked in blistering heat, when the water bottles the helpful volunteers were distributing were downright hot; in chilling cold, with our hoods up and gloved hands clutching thermoses; stepping gingerly over deep puddles, dripping wet as we shunned umbrellas (so far never in snow). Still, the events are usually fun and always inspiring. In the midst of the upbeat music, entertainment, and snacks, there are of course speeches, information, organizations with handouts (so excited that NC WELD–Women Encouraging Living Donation–will have a table this year!), and health screening booths.

I remember the middle-aged man who spoke to the gathered walkers before the start of the walk a couple of years ago. He described being at one such walk a few years before and deciding to do the screening. There he’d discovered to his shock that he had stage 4 kidney failure. That Kidney Walk saved his life: he began dialysis within a few months and was able to have a transplant a couple of years later.

It bears repeating: chronic kidney disease is a silent killer. Most of the more than 30 million people in this country who have it don’t know it because they don’t have symptoms yet—and may not until it’s too late. The transplant center and NKF have mobile units that do screenings around the state throughout the year. Education, screenings, and research all cost money.

That’s why we walk. Proudly wearing bibs that say DONOR (me), RECIPIENT (my son), or DONOR FAMILY (my husband), we chat with other walkers. We’ve met hopeful families of kidney patients desperately in need of a kidney, transplant recipients happily walking with a bounce in their step for the first time in years, patients who’ve been on dialysis for more than a decade and can never have a transplant because they have too many other serious health conditions–some are not strong enough for the walk but come out to volunteer and help raise funds for awareness, education, and research.

Please consider donating whatever you can or just share this post on social media or email it to your families and friends. Our team is called the Comeback Kidney, named after our nickname for the kidney I donated to my son more than 13 years ago. But whether or not you donate to our team, to the Kidney Walk in general, or to any kidney disease organization, please spread the word about the importance of kidney heath—and be sure to get your kidneys checked.

White House Kidney Health Initiative—Wow!

It’s hard to overstate what a big deal this is.

I hesitated to post anything on it till I’d had a chance to digest it and try to learn if it’s as great as it seems. Frankly, even if it’s less than it appears—some of it rests on the continuation of the Affordable Care Act, need I say more?—and takes longer to go into effect than we think, it’s still a big deal. Given that it’s one of the biggest sets of changes in kidney health care in five decades, attention must be paid. As my friends at WELD (Women Encouraging Living Donation) put it, “Regardless of your feelings about the messenger, the message here is breaking the logjam…” (the “logjam” being the often 5-to-10-year wait for the roughly 100,000 people waiting for a kidney in the United States).

The whole system is in need of repair, so not surprisingly, the executive order/kidney health initiative has a few pieces to it:

1. Helping living donors. The exciting decision to cover a donor’s lost wages, child care, and other family expenses (and expand the pool of those eligible) alone can be a game changer for so many potential donors. This is the proposal that I provided public comment for in May when the federal Health Resources and Services Administration’s (HRSA’s) advisory committee was considering it [see post]. Waitlist Zero founder/director Josh Morrison (a living kidney donor himself) whose organization was behind the effort, estimates conservatively that the revised policy could increase the number of living donors by 25%. Simply put, helping living donors helps kidney patients. Getting a kidney from a living donor not only shortens that recipient’s wait, it removes one person from the waitlist for a deceased organ and generally offers a better outcome.

2. Early Detection and Research. The new Medicare fee structure will provide incentives for physicians to take the time to discuss and screen kidneys at an earlier point. For example, people with diabetes or high blood pressure, particularly African Americans with those conditions, are at higher risk for chronic kidney disease, which is a gradual loss of kidney function.  For most people, unless they have a family history, it’s not on their radar. I’ve heard several young people say that they didn’t learn their kidneys were failing until they had a screening at a health fair or went to the ER for something else.  That’s why it’s called a “silent killer”—it often has no noticeable symptoms until it reaches the point of kidney failure and sometimes not even then. The initiative also calls for increased funding for research.

3. In-Home Dialysis. The initiative aims to enable most dialysis patients to do it at home (currently only 12% do so by a variety of options, including while they sleep). It plans to improve support to make it more feasible financially and logistically. Life on dialysis is an enormous burden, sapping one’s energy, strength, and time. For the majority of patients, who receive it at a center, it means traveling three days a week to the facility, which might be more than an hour’s drive from home, and being connected to a machine, currently 4 hours at a time. My son, who was on dialysis for 20 months before his transplant in 2006, recalls being on dialysis as “the worst experience of my life” [see post]. Doing dialysis at home, which, admittedly would still not be everyone’s preference, would make it easier for more dialysis patients to continue working.

4. Overhauling allocation of deceased organs. The initiative aims to make thousands more kidneys available by reducing the number discarded for a variety of reasons, due to waste and for medical factors. The system is very complicated, so I won’t even try to analyze these changes. The trend in recent years already has been to consider the benefits of using “high-risk” donor organs; organ transplants that were once almost unthinkable—say, between HIV-positive donors and recipients—have been successful. By the way, the oft-cited “national waiting list” is actually a network of myriad regional lists. When a deceased organ becomes available, they look for the best match, usually in the same region so it can be transplanted ASAP, which can lead to geographic disparities. “Matching” a donor and recipient isn’t just a question of blood type—it’s also based on age, how long someone’s been on the list, and other factors. Also, to be clear, the waitlist isn’t like a numbered list, where you might move from number 2,000 to number 1,999 and so on.

Some of these steps will take years, but some are expected to begin as soon as January 2020. But kidney patients and their families and friends should certainly rejoice at this news. I know I do.

5 (Big) Benefits of Live Donation–for the Donor

In my post last week, I explained some of the enormous benefits of a live vs. deceased-donor kidney for the recipient, but did you know that there are real benefits to the donor, too?

For family members or couples, they are nothing short of dramatic:

1-To see a loved one who’s been pale, weak, and often listless for many months or years gradually become their old self again is pretty powerful. And a partner who wasn’t interested in intimacy during the period when he or she was on dialysis may now discover a new bond.

2- A spouse or parent whose ability to work was limited for a long period may soon resume a full-time schedule–or even launch a new career–to substantially improve the family’s finances.

3-Couples that have been uncomfortable for a long time about socializing—whether because of specific obstacles or simply due to the patient’s lack of energy or interest—will soon be able to enjoy evenings out with friends or family.

4- If the donor has been the caregiver, the reduced stress and no doubt improved sleep can have considerable benefits in mood, overall outlook, and even job satisfaction.

For family members or anyone who donates a kidney—even to a stranger–the benefits are universal:

5- The feeling of personal gratification is indescribable. Knowing that you’ve helped give someone—anyone—a chance at a healthy, productive life—is an extraordinary feeling. Donors in studies report a boost in self-esteem, and 9 out of 10 say they would do it again. Through donor-support groups I’m active in on Facebook, I’ve been struck by how life changing the experience has felt for nearly all of us, including the few who have later had complications or whose recipient didn’t fare well for as long as expected.

A fascinating journal article inspired this post. The researchers argue that for the above reasons and more, transplant centers considering a potential donor’s risk might do well to acknowledge the undeniable benefits for certain donors as well.

“Van Pilsum Rasmussen, S. E., M. Henderson, J. Kahn, and D. Segev. “Considering Tangible Benefit for Interdependent Donors: Extending a Risk–Benefit Framework in Donor Selection.” American Journal of Transplantation 17, no. 10 (Oct. 2017): 2567-2571.

National Kidney Month and National Women’s Month

Yes, March is National Kidney Month and National Women’s Month. What do kidneys and women have in common, you ask? Both groups are underappreciated! We can hope that someday we will get to a point where we don’t need to introduce people to integral aspects of our culture and our history (like Black History Month). For now, though, we obviously do. And this month we highlight the critically important role women play in our society. Similarly, we highlight the critically important role the kidneys play in our body.

Do you know what your kidney function is? You may think you know what women contribute to daily life, but do you know what kidneys do? For starters, they remove dangerous toxins from the blood, regulate the amount of fluids in our body, maintain the salt content of those fluids, balance minerals, produce urine, promote bone health, and so much more.

I’ve had a healthy respect for kidneys ever since my son was in dialysis. For nearly 2 years, dialysis machines, doctors, nurses, and technicians did a masterful job of trying to approximate what healthy kidneys manage to do every day.

Yet even with doing their damndest to get this juggling act all right, dialysis could produce only about 20% of normal kidney function. One-fifth.

Like women, kidneys pull off much of their heroic daily work quietly, often without calling attention to themselves. That’s why when kidneys are starting to fail, we usually don’t notice. About 30 million Americans have chronic kidney disease—meaning they’re gradually losing kidney function—and most of them don’t know it. It’s called “the silent killer” because people usually don’t feel sick (and often look fine) until it’s dangerously far along. I know of people who just had a routine screening at a health fair, or went to the ER for a broken arm, or just didn’t feel right—only to learn, to their shock, that their kidneys were failing significantly and they needed to start dialysis ASAP.

My son knew he had kidney disease ever since it was diagnosed following a strep infection when he was in college. He was otherwise healthy and was told to monitor the condition with routine blood tests, which he did, never showing or feeling any symptoms. It was only at a routine checkup soon after his college graduation that the tests showed a precipitous decline in his kidney function. Within a month he was having surgery to put in an access point for dialysis, in 4 months he was undergoing dialysis 3 days a week, and close to 2 years later, he was welcoming my left kidney into its new home. It’s lived there happily since 2006, by the way. (My right kidney is managing fine without it.)

So, this month, please make an appointment to have your kidney function checked with a simple blood test. (And be sure to thank a woman every day!)

The Greatest Gift

Carol Offen

Between us, my son and I have four kidneys—not very remarkable, except that he has three of them. I gave him one of mine about twelve years ago. The reason was simple: after spending nearly two years on dialysis, he clearly needed the kidney and I didn’t. I still had another that worked just fine so it was a perfect opportunity to share resources within the family. Today even unrelated people in different parts of the country can do the same, thanks to sophisticated computer algorithms. But this was more than twelve years ago.

My son, Paul, had the extraordinarily bad luck to develop chronic kidney disease—which can gradually lead to kidney failure—when he was in college. He was otherwise healthy, we had no family history of it, and he didn’t have diabetes or hypertension. Plus he was skinny.

What he had was a lingering strep infection.

Keep reading!

This post is excerpted from an article I wrote for the Fall 2018 issue of South Writ Large, a quarterly online magazine published since 2007. The theme of the issue was sharing resources, so living kidney donation was a natural fit.

5 Truths about Becoming a Living Donor

This is from my original 2017 post on the National Kidney Foundation website.
 
…Throughout the donor testing—blood draws, X-rays, a stress cardiogram, CT angiography, lung function test, and more—the nurse coordinator was just a phone call away. She offered gentle encouragement, useful tips (like lidocaine to numb my arm for blood draws), and, thankfully, a sense of humor.  
 
After each test I’d call her nervously to see if I’d passed. How would I really feel if I were disqualified? Would I secretly be relieved? To my surprise, I realized I’d be crushed.
 
So when the psychologist asked if I was sure I wanted to do this, I laughed. “Trust me,” I said. “You can skip to the next question.”

Keep reading!