Contributor Spotlight: Emotional Challenges of Caregiving

Some people support living donors and transplant recipients not only on a practical basis but emotionally. Two of The Insider’s Guide to Living Kidney Donation‘s contributors are authorities on the subject. One is a licensed professional counselor, Kathleen Fitzgerald, whose clients often include families contending with the emotional fallout of kidney failure, transplant, or any serious chronic illness. The other, Sharon Williams, also has a professional perspective. She is a researcher who specializes in family caregivers for someone with a severe chronic illness.

Contributor Sharon Williams blows out the candles at a recent birthday celebration with family and friends.

Sharon also knows the subject firsthand, because for nearly 20 years she was a caregiver for her spouse while he was dealing with chronic kidney disease, liver disease, and later a transplant. In her chapter of the book, she explains that she eventually realized that her research hadn’t prepared her for the difficult emotional challenges of this kind of caregiving. She shares the valuable lessons she learned along the way. Spoiler alert: it’s wise to let the patient take the lead in planning how to proceed and be ready to support those very personal decisions.

Sharon has since transitioned to phased retirement, working roughly half-time until she retires from her current university position in two years. Today she enjoys spending time with family and friends, including her church family, “a blessing I treasure more and more each day.” Sharon also enjoy walks with her dog and dancing, especially line dancing.

Contributor Kathleen Fitzgerald counsels families facing emotional challenges of a health crisis.

Kathleen’s chapter describes the various ways that families contend with highly charged emotional situations related to health crises. She explains the diverse approaches people try–often unsuccessfully–and then offers helpful case studies of different scenarios, describing why some approaches were beneficial. These different perspectives will resonate with many readers–regardless of whether or not their family member is considering donation or transplant.

It all comes down to the undeniable truth that donation and transplant are far more than medical decisions and experiences. They touch families and friends in profound, multifaceted ways. The ripple effect extends far beyond the individual and even the family unit.

Be sure to read Sharon’s and Kathleen’s complete chapters. If you haven’t already ordered your copy of The Insider’s Guide, you can do so here.

For related posts, resources, and more information on The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

Because of Organ Donation

As a living kidney donor, I launched this website primarily to share information about living donation. Because it was my son, Paul, who got my transplanted kidney, I also often write about chronic kidney disease and transplant recipients.

And, because I fervently believe in organ, eye, and tissue donation generally, I sometimes write, too, about the importance of signing up to be an organ donor. Now I want to tell you about a book that includes all these perspectives and more: Because of Organ Donation.

Brenda Cortez has compiled and edited this anthology of 25 moving, first-person stories by donors, recipients, and donor families (that is, family members of deceased donors). Brenda is a living-donor friend/author I’ve written about before concerning her Howl the Owl (it stands for Help Others With Love) children’s books about donation and related topics. She’s helped thousands of kids understand and cope with kidney disease and transplant in their families through her books and in visits to schools and hospitals with little Howl.

Full disclosure: when I began reading Because of Organ Donation, I think I expected that I’d mainly read the donor and recipient chapters and maybe just skim the ones about deceased donation. Instead I read it cover to cover, absorbed and touched by the powerful stories.

I naturally found old friends here from the kidney community, two of whom I’d met at the Guinness Records Living Donor Rally in Chicago in 2018: Brenda herself, who shares her own story of donating to another mom she knew slightly from her daughter’s school; and Kate Griggs, co-founder of the Guinness event, who was shunned by some friends and colleagues for donating to a stranger but still turned living donation into an avocation. (If you ever spot a living donor decal on a car, it was likely a gift from Kate, who’s mailed thousands of them gratis around the world).

The other old friend I found here is Jim Myers, a kidney transplant recipient who, years ago, became a full-time–and a half!–donation advocate (he serves on major kidney organization boards, expertly uses social media, and hosts an interview show (that Betsy and I were on).

I also encountered some of my newer Facebook donor friends, like Deb Kavanaugh (also a Guinness alum!) and Trish Phillips.

I expected to be moved by all these stories, but I didn’t know I would also learn, not only about deceased donation but even living donation (I was stunned that a donor was offered the option of taking back her kidney when her recipient died).

The stories from donor families illustrate clearly how honoring a loved one’s wish to be a donor allows grieving families to take comfort in knowing that he or she was able to dramatically change someone’s life. I was particularly touched by contributors who’d known the unimaginable pain of losing a child and their joy at connecting with their child’s recipient.

Most if not all of the contributors are obviously committed to furthering organ donation and are very active in related organizations and community activities. Because of Organ Donation will surely resonate with readers who share that commitment or have ever been touched by organ donation–but also with many others who can relate to these stories of love, grief, hope, and commitment.

Brenda’s newest book Voices-19 will be out soon. For related posts and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

Why Not Just Wait for a Deceased Donor? Here’s Why

According to polls, about 90% of Americans say they favor organ donation, but only about 60% are registered donors.

Just curious: what percentage of people in the United States would you guess die in such a way that traditional organ donation is possible? A third? A fifth? Not even close. The answer is “less than 1%”: typically in a hospital following an accident. So, no, not at home in their beds, not on impact in a car crash, often not even after a slow death from myriad diseases.

Traditional organ donation 101: When a dying person has been determined to be brain dead—no activity, no chance of survival—but the heart is still beating, blood is flowing to their internal organs. Once the organ has been removed from the blood supply, the sooner it’s placed in the recipient’s body, the better. With luck it’s off the blood supply for only a few minutes or hours. When it’s necessary to put it on an airplane, that interruption may last several hours—technically, 24 to 36 hours is acceptable, but the sooner it can be hooked up to the recipient’s veins, the better.

So most of the 100,000 people on the national waiting lists may languish several years (5 to 10 is not uncommon) before they receive a lifesaving kidney, and thousands don’t get one in time. Clearly we need more people to be registered donors.

So, absolutely, register to be an organ and tissue donor after you die and tell your family of your desire (and then urge them to do the same). But even if everyone complied, we’d still have a kidney shortage because of that 99% that can’t be used in traditional donation.

That’s where live donation comes in. Not only does it add to the pool and shorten the wait, it even improves the outcome for most transplant recipients. And we need to remove obstacles for potential donors so that more people will consider being living donors. Tell your representatives–in your state and nationally–to support the Living Donor Protection Act and to increase funds for financial assistance for living donors and for early detection of chronic kidney disease.

An important health crisis as urgent and daunting as an organ shortage deserves more attention, more funding, and a meaningful commitment to finding creative solutions.

For related posts, resources, and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

Relax, Living Donors: Your Kidney Function Is Probably Just Fine

Anyone who’s been reading this blog for awhile knows that I periodically post in frustration about the subject of donors being needlessly upset when their kidney function appears slightly lower than “normal.” It’s usually because their provider has wrongly concluded that the donor thus has stage 2 or 3 chronic kidney disease. That’s not merely my opinion–I have no medical credentials–that’s according to respected medical writings on the subject.

The eGFR (kidney function) scale they’re referencing is relevant mainly for people with two kidneys who may be showing signs of kidney disease.Well-meaning but uninformed providers–sometimes even nephrologists (kidney specialists)–often forget that a healthy donor is probably registering lower kidney function simply because he or she has one kidney.

Donors do lose kidney function, but the remaining kidney gets plumper and takes on some of that burden; their creatinine level (toxins in the blood) may be borderline for a few months but then typically stabilizes at a perfectly acceptable level. Mine, for example, 15 years after donation, is fine even for someone with two kidneys.

I recently heard of other examples of confusion on this point, so it bears repeating: a slightly higher creatinine and a slightly lower kidney function in an otherwise healthy living donor is just fine!

Transplant teams need to do a better job of preparing their donors for the likelihood of their having a “new normal.” Equally important, teams should routinely alert a donor’s PCP to this eventuality from the start–that is, when the donor leaves the team’s care soon after the donation.

Some frightened donors have run to consult a nephrologist, worried that they had developed chronic kidney disease. (I’m not suggesting that there are never instances of a living donor developing kidney disease, but those are rare. We’re talking here about a donor who is in good health and showing no signs of kidney disease.)

In Facebook support groups, even well-informed donors often describe having had to get a letter from the transplant team to “convince” their provider that the donor knew what he or she was talking about.

If even health care providers are not fully informed, is it any wonder that donors–not to mention the general public–are not fully informed about living donation? Given the urgent need for more living donors, our health care system and the kidney community need to do a better job of raising awareness about kidney disease and donation.

For related posts, resources, and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

Save $$ and Spread the Word

I’m always appreciative when people spread the word about this website and related issues that are important to me: organ donation, living kidney donation, chronic kidney disease, and, most recently, our book, The Insider’s Guide to Living Kidney Donation. There are lots of ways you can do that.

#1. Whether you buy the book on Amazon or any other site (see below), please consider posting a review of the book on Amazon.

#2. This week only, click here to get 30% off the price of the paperback! Use promotion code KIDNEY (okay, so it’s not very original, but it IS easy to remember, right?) at checkout.

#3. Share all this information and the links on your social media posts, and, of course with friends and family.

Donors, Your New-Normal Numbers Don’t = Kidney Disease!

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!

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.