Health Information Is Power!

Before my son was diagnosed with chronic kidney disease in 2004, I knew as much as most people about the subject—which is to say, almost nothing. Not sure if I even knew you can live a normal life with one kidney. Before he developed kidney failure, and I started the evaluation process for donating my kidney to him, I knew almost nothing about living donation. Now, fortunately or unfortunately, I know more than most people about these things and have made it my mission to help people learn before a crisis hits—in the hope, ideally, of preventing more such crises.

So now I find myself in a similar situation concerning liver disease and liver donation. No, thankfully, it’s not my own family this time, and I’m not considering being a living donor again in my 70s, but as always, it’s because of someone I care about. You may have read here that my friend and co-author, Betsy, needs another kidney transplant after 15 years. That was bad enough. For a while though, a few months later, there was good news when she’d found a living donor and was scheduled to have the transplant in December. Unfortunately, the good news gradually became more tentative as her health began to deteriorate and the transplant was postponed.

And now the biggest shock of all came last week when she/we learned that she also needs a liver transplant. After being stunned and saddened, I began my new education about livers and liver donation. All I knew was that, since the majority of people on the deceased-donor waiting lists need a kidney, the wait for a liver is much shorter: about a year versus 3 to 5 years (often 5-10). As for living liver donation, I knew you can donate part of your liver because it grows back but that it’s a bigger deal than donating a kidney–it’s a more serious surgery, with a longer recovery.

However, by reaching out to the Facebook donation/transplant community, reading articles, and searching online, I’ve already learned some very encouraging information. Did you know that you can donate two-thirds of your liver and it regenerates so much that within a few months, both you and your recipient have a healthy-sized liver?

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I also learned that the donation surgery is easier than it used to be and that some centers have started to use minimally invasive laparoscopic surgery as is done for kidney donors. That means a much smaller incision, far less pain and blood loss—and a quicker recovery. That should make it a little easier to think about asking people to consider donating.

That’s all good news, not just for Betsy and her friends and family, but for all patients and their families and friends. Betsy certainly has a lot to deal with and is facing many difficult decisions and waiting periods. But she’s an amazingly positive person and is learning all she can and asking questions so she’ll be as informed as possible. As we always say, information is power—never more so than in matters of health.

Getting Closer to Extending Drug Coverage for Transplant Patients

A while back I wrote here about the insanity of cutting off lifesaving drug reimbursement for kidney patients. I’m happy to report some real progress on that front. At long last, a bill to extend Medicare coverage for kidney transplant patients–and Honor the Gift of life–is ready for a committee hearing this week! HR5534 is scheduled for a hearing in the House Subcommittee on Health. Please contact your members of Congress and urge them to support this crucial and common-sense bill. And sign the pledge to spread the word: https://honorthegift.org/act/

It’s got a long multi-syllabic name–Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act–but it’s really pretty simple. It safeguards patients’ access to critical lifelong medications–that is, long after the 36 months currently allowed for patients under 65. Oh, and this is hardly a measure that will break the bank. On the contrary, it will save Medicare an estimated $300 million over 10 years!

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How? Because antirejection meds for transplant patients keep people healthy and productive. Patients who don’t have other drug coverage and can’t afford their expensive medications (full cost is roughly $3,000 per month) often try to do without or cut back. The tragic result is death or the need for dialysis, which costs the government about $90,000 per year. Not only is dialysis far more expensive than drug reimbursement, it comes with a much worse prognosis. People on dialysis have a 5-year survival rate of 35% (contrast that with a transplant patient’s 97% survival rate 5 years out). Those lucky enough to get off dialysis and have a transplant [see my son’s candid story about life with a transplant vs. being on dialysis] naturally desperately try to protect that gift.

About 113,000 people in this country are on waiting lists for a lifesaving organ–nearly 100,000 of them are waiting for a kidney. As a society, we too need to do all we can to protect that precious gift.

Wondering Who Gave a Kidney to Stevie Wonder?

You may have heard that Stevie Wonder had a kidney transplant recently from a living donor, and, fortunately, all is well. There’s been much speculation about the identity of his donor. If you too have been speculating, let’s test a few assumptions–and clarify a few things about living donation while we’re at it. What do we already know about the donor?

1-His donor needn’t be a family member—not even a distant relative. Anti-rejection meds are so advanced now that a good match is far less important, and more and more living donors are not blood relatives.

2-Stevie Wonder’s donor isn’t necessarily a man. I know many women who have donated to their husband, father, son (I donated to mine), friend–whatever. Though a very large man might have a kidney that’s too big for a small woman, and a small woman’s kidney might be too small for a very big man, for the most part, male-female donor pairs are not a problem.

3-The donor also needn’t be African American. It’s not at all uncommon for a white person to donate their kidney to a black person and vice versa.

4-His donor needn’t be young. I was 58 when I donated my kidney, and living donors over 50 are increasingly common—we now represent more than a third of living donors. Some transplant centers have a cutoff of about 70 for donors, but most decide on a case-by-case basis, depending on the kidney’s health and the donor’s overall health. I know of people who’ve donated in their mid-70s.

If you’ve read this far, you now know that we can’t assume much about Stevie Wonder’s donor. So, what can we assume? Just this: the individual is a very healthy, very caring adult.

I wish them both as positive an outcome as my son and I have had—and we’re 13 years post transplant. I really do hope they talk about it publicly to help clear up some more assumptions about living donation. Maybe doing so will encourage others to consider being living donors to meet the tremendous need and shorten the wait for a lifesaving organ. That’s ultimately what my co-author and I hope to do with our book in progress, “The Greatest Gift: The Insider’s Guide to Living Kidney Donation.”

A Multimedia Tribute to Donation

I’ve enjoyed sharing my story of donating a kidney to my son, Paul, with just about anyone who’ll listen, in most every medium available: in person, of course (IRL, as they say); in print; online; on radio; on TV—and, most recently, the coolest yet: an interactive multimedia wall.

What, you ask, is a multimedia wall? It’s a giant touch screen about the size of a double window, a touching tribute to donors and recipients at University of North Carolina Hospitals in Chapel Hill. That’s where Paul’s transplant (ditto my donation just down the hall) took place more than 13 years ago.

“The Stories of Transplant Care” wall is in the busy lobby of UNC’s Children’s Hospital. On a recent Saturday, UNC Health Care unveiled it to a small crowd of recipients and their families, donors, and professionals from UNC and Carolina Donor Services, which cosponsored it. The program, which was predominantly about deceased donation, was a powerful reminder of how, in death, one person can help several others to live productive lives.

In the audience was an older gentleman who’d had a heart transplant there 32 years ago (yes, you read that right–he may hold the record). In 1987, when he had his transplant, the life expectancy for a heart transplant recipient was about 5 years. Unbelievable!

If you tap “Donor Stories” or “Recipient Stories,” the screen takes you to articles or video interviews with such individuals or their families, sharing their personal experiences. You can also learn about the history of transplants and related topics, including “Information about Organ Donation.”

Among the Donor Stories is the heading Carol O., above a big photo of my husband (Neil), Paul, and me at a Triangle Kidney Walk; it alternates with a similar photo from the previous year’s Walk and a family photo that includes our daughter, Nora, taken in Paris last year. Next to the changing photos is a long story about the donation and transplant.

Seeing our family’s triumphant story and smiling faces on a wall with those memorable stories of donors and recipients was a very moving and humbling experience. I felt honored to be among them.

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.

Living Donor Registry and At-Home Test for Donors

Thinking about becoming a living kidney donor but wonder where to start? Maybe you know someone who needs a kidney and don’t know if you’d be a match. Wondering if there’s a central way nationally to register your interest and be guided through the process?  Surely there oughta be, but there really isn’t, although kidney registries perform some of that function (see Resources). That may be about to change.

Last week we heard about some exciting developments for both the nearly 100,000 kidney patients waiting for a transplant and people who want to start the process of becoming a living donor. Donate Life America and Fresenius Medical Care Foundation announced that they were teaming up to launch the first-ever national, universal registry of potential living kidney donors and to pilot a simple, at-home saliva-sample test for donors.

Did you know that little more than 20,000 kidney transplants happen in this country in a year (about two-thirds of them have a deceased donor)? That’s not much, and clearly, it’s not enough. There simply aren’t enough eligible deceased donors alone to fill the urgent need. Some patients languish on the waiting lists for 5 to 10 years. For many thousands of them, that’s dangerously long. As a result, each day about 16 people die in this country because they didn’t get a life-saving kidney in time. Every day.

Donate Life is better known for its important work in promoting deceased organ, eye, and tissue donation through the national organization and affiliated state programs. In recent years though, with the pressing need for transplants, it’s expanded its mission into living donation. In North Carolina, for example, I’m a proud member of my local Donate Life NC WELD (Women Encouraging Living Donation) branch and have written a few posts about it–see one example.

If the name Fresenius looks familiar, you probably know it as the huge private dialysis provider. But this is its separately operated nonprofit. The registry is scheduled to be up and running in spring 2020, and not many details have been released. The at-home tests, though, are supposed to be piloted in a few transplant centers between now and February 2020.

Periodically, there’s an outpouring of interest in kidney donation in response to an individual’s publicized need of a kidney. A family member walks around town wearing a sandwich-board or buys space on a billboard to spread their plea. Only some of the people who reach out get tested, and only one becomes the donor. More often than not, those other potential donors just vanish and with them the chance of saving another life. With the exception of some limited experiments, there has been no way to register these people and to capture and direct that interest.

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To patients in kidney failure and donation advocates, that lack of direction is a particularly tragic waste of potential. This registry just might make all the difference.

The Top Kidney Donor Blogs

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.

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