Happy Valentine’s Day AND National Donors Day! You don’t need to be a living donor like me to be able to someday save a life–or several, in fact. If you don’t have that little heart on your driver’s license and haven’t already registered as an organ donor, please don’t wait to renew your license: go to organdonor.gov, among other sites.
More than 113,000 people in the United States are waiting for a lifesaving organ (most of them for a kidney). Only about 3 in 1,000 people die in such a way that organ donation is possible–for example, in a hospital following a car accident–so the pool is very small. That’s why it’s critical that everyone register. But those that can be organ donors can donate up to eight organs: two kidneys, two lungs, a pancreas, a liver, a heart, and intestines. Plus eyes and tissue–even hands and face.
Registering as a donor is important, but sharing your wishes with your family is just as important. When in doubt, at a very difficult time, a family in grief may choose not to donate the person’s organs. Many grieving families take lasting comfort in knowing that their loved one’s organs will help save someone’s life and bring relief and joy to another family. Most families will want to honor your wishes, if they just know what they are.
I always tell potential kidney donors to keep an open mind but to do their homework and be as well informed about living donation as they can be. Turns out that that advice even applies years later.
Through social media donor support groups, I recently was stunned and outraged to learn that some donors have been told that they have stage 3 chronic kidney disease. One donor said she cried all night. Before you conclude that their “disease” is a result of kidney donation, I hasten to add that these were people with normal kidney function. In other words, as researchers have demonstrated, those living donors DO NOT HAVE CHRONIC KIDNEY DISEASE! Their slightly low readings are perfectly normal for them.
Apparently, their primary care providers—and, unbelievably, sometimes even nephrologists—were referring to the eGFR (estimated glomerular filtration rate) scale based on people with two kidneys and/or real kidney disease. Donors lose 25 to 35% of their pre-donation kidney function, but that’s still sufficient to lead a healthy normal life. It’s meaningless and patently wrong to look at the numbers in a vacuum and say that these people have chronic kidney disease.
As we get older, no matter how many kidneys we have, our kidney function declines. It’s especially common for people over 70, like me, to have a slightly low eGFR. At my last check-up, though, 13 years after donating my kidney to my son, my eGFR was 69 (normal is over 60).
So, if you are a kidney donor, don’t be alarmed at news of a slightly high eGFR. Ask questions (how long has it been in that range? what’s your creatinine?), and always remind your provider that you have one kidney. You may well be relieved to know that your new normal is just fine!
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.
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?
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.
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!
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.
Have you seen this excellent, candid article about the issues a young family man grappled with before making the decision to donate? It’s a very honest, clear-headed portrayal of what it means to be a living donor.
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.”