I had a delightful surprise today. I learned that the National Kidney Foundation had posted my expanded version of my blog post about the clear benefits of live donation for the donor. This is the first time my byline has said “Carol Offen, NKF Kidney Advocate”–a true honor! Read my article in the NKF newsletter here.
If you’re reading this, chances are you’re considering donating a kidney or have already done so–but you also very likely know and care very much about someone who has chronic kidney disease (in my case my son, Paul, and my friend/co-author, Betsy, for starters). Or maybe you have it yourself.
With kidney patients at a high risk of contracting COVID-19–whether they are transplant recipients, are undergoing dialysis, or contemplating treatment–this is a particularly important issue for all of us and others in the kidney community. I hope that you will share the resources below with your friends and family so that they can remain safe and healthy. These materials are provided by the National Kidney Foundation (NKF) and offer advice on keeping healthy during this horrific pandemic. These links will be updated as needed.
The latest information and best practices to be prepared for COVID-19: https://www.kidney.org/…/be-prepared-kidney-patient-prep-co…
Information to help kidney patients and their families respond to emergency situations: https://www.kidney.org/help
And a blog post from NKF’s CEO Kevin Longino on Covid-19 and the kidney community: https://nkfadvocacy.blog/…/supporting-you-during-the-coron…/
Whatever your own health status, and wherever you live, please stay safe and closely follow recommendations and requirements in your area. Also, here’s clear, valuable information on the virus from someone who knows more than anyone on the subject, Dr. Anthony Fauci, interviewed by Trevor Noah. https://youtu.be/8A3jiM2FNR8
This week I met with North Carolina Rep. Verla Insko, my state legislator, and Katey Cipriani, the National Kidney Foundation’s regional community outreach director. The topic was living donation, of course. We were seeking Rep. Insko’s support for a Living Donor Protection Act in our state, as we had with other legislators just a few months ago at the legislature. The General Assembly is between sessions now, so this meeting was more informal, a pleasant chat in a quiet local coffee house in Chapel Hill. I was there to share my story of donating to my son and offer some personal insights into why we need to protect living donors from discrimination.
So why might donors ever be discriminated against for saving a life? Let me give you an example. To be approved as a living donor, I had to pass numerous tests that looked at my heart, lung, kidney, general fitness, myriad blood tests… Thirteen and a half years post donation, my kidney function is fine and I’m still in excellent health at 71. I’m active, enjoy Zumba a few times a week, and walk regularly. Nothing remarkable there, but I have donor friends in their 50s and 60s who run marathons. And yet…
If we apply for a life insurance policy tomorrow, there’s a chance an insurer could either deny coverage or up the premiums. Some cap coverage much lower than requested. Doesn’t make sense, does it–not to mention that it’s morally indefensible? It doesn’t happen often, but a study found that about one in four living donors had experienced some type of insurance discrimination–mainly due to misinformation about the negligible impact of living with one kidney. Did you know that many healthy people were born with one kidney? Donors do lose some kidney function, but the other kidney gets plumper and takes on part of the job of the “missing” one. As a result, donors have sufficient function to live normal productive lives.
Among other things, a state Living Donor Protection Act would prohibit insurance companies from denying or limiting coverage–or charging higher premiums–for life, disability, or long-term care insurance for living donors. The proposed federal LDPA, which has been reintroduced in Congress and has dozens of sponsors, would also address job protections and a few other issues that can be disincentives to donation. With nearly 100,000 people waiting for a kidney from a deceased donor, removing those disincentives is critical.
Most people don’t realize how widespread chronic kidney disease is–it’s more common than breast cancer or prostate cancer. As I told Rep. Insko, I really think most people are no more than two degrees of separation from someone who’s had or needs a kidney transplant: a friend of a friend, a neighbor’s cousin, a PTA member’s spouse…
Rep. Insko listened attentively and asked how other states have approached the task of protecting living donors: How many have relevant laws (11, but several more are in process)? Which one do we want to model North Carolina’s on? Did those states encounter any pushback? What concessions did they have to make to get it passed?
She also had several helpful suggestions of people in the General Assembly to approach, including those who had some ties to health care. She promised to take a close look at the related materials Katey had brought and was interested in learning more. As it turns out, we have time–most new legislation can’t be introduced until the 2021 session of the General Assembly.
I’m learning that advancing legislation is a slow, stop ‘n start process. But we’re making progress, gathering support, and picking up some tips along the way.
This weekend my husband (Neil), son (Paul, my recipient), and I participated in our umpteenth National Kidney Foundation Triangle Kidney Walk [see my post on our long history of kidney walks], in Durham, NC. We were thrilled to learn that it set a record for donations: more than $97,000, with money still coming in. I think it broke another record, too–this may have been the coldest one (I know it’s the only time I’ve ever worn a winter coat over my Kidney Walk tee shirt).
Because of the damp chilly weather, the Walk organizers decided to shorten the route. What was supposed to be a 2.4-mile loop was reduced to just 1 mile total. True, my fingers were numb even before it was over, but we were still a bit disappointed.
It was long enough though to fall into conversation with a woman doing her first Walk. She’d driven all the way from the Pinehurst area because her mother had died recently from kidney failure, and she felt she had to do something. Like so many of us, she’d known very little about kidney disease before her mother started dialysis 4 years before. A few family members had planned to come along, she said with a little annoyance, but one by one they’d backed out. To her credit she came alone.
We talked about how little is known about kidney disease and how important it is to focus more attention on education in addition to research. We learned a startling statistic before the walk started: the U.S. National Institutes of Health, which is the main source of health-related research in this country, spends $568 per patient/year on cancer research. Kidney disease research accounts for…$29 per patient/year! I thought I’d heard it wrong and had to double-check before finalizing this post. And yet chronic kidney disease affects more than 30 million Americans. It’s yet another reminder of how important that new public awareness campaign is [see my previous post].
We saw lots of familiar smiling faces at the walk, many peering out from under wool hats. Friends from Donate Life NC/WELD (Women Encouraging Living Donation) were working a table this year. One of them, Dolores McGrath, a fellow NKF Kidney Advocacy Committee member, would be joining me for my first “official” visit to the state legislature this week. (More on that in my next post!)
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.
A short while ago I came across “The Top 30 Kidney Donor Blogs and Websites to Follow in 2019.” It lists individual personal blogs from donors and recipients, plus from major organizations (nearly half of the websites listed, in fact) like the National Kidney Foundation and the National Foundation for Transplants. Last week I noticed that there was a way to submit a blog, and I did. So, guess who’s #10 on the Top 30 list now?
Sure, the Top 30 is a marketing vehicle, but it’s also a convenient way to find interesting donor-related blogs; you can click to see their latest posts. Each listing also tells how frequent the blog posts are (mine average four a month), the number of Twitter followers (I have a modest but growing 280), and such.
This blog went live just several months ago, in March 2019. I’ve been delighted to see how well it’s been received. I didn’t know what to expect in terms of number of views and visitors, but I’m pretty pleased to have surpassed the 3,000-views mark (and more than 1,700 visitors).
I’ve enjoyed sharing my living-donor experiences and recipient-family insights with you; helping to encourage living donation–not by proselytizing but by offering candid, clear, practical information; and fighting to protect the rights of kidney patients and donors (for example, check out these blog posts). I’m very glad that more people may find their way here.
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.
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.