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.

Betsy’s Need for a Donor Makes Local TV News

So glad that ABC News (WTVD) did a piece on Betsy Crais’s need for a second transplant (see the video), as I described in a post about my book’s co-author last month.

Betsy initially thought she had four possible kidney donors in her immediate family. A few weeks ago she received a call from the transplant center saying that one by one, all of them had been eliminated. Potential donors have to be in excellent health and can be disqualified not only if they have a condition that could potentially harm the recipient–but also if donating might jeopardize their own health.

Fortunately, Betsy has never been one to be discouraged for long. She took a deep breath and sat down to send off an email to friends, family, and colleagues, letting them know about her kidney failure after 15 years of a successful transplant. Within minutes of hitting SEND, Betsy was heartened to receive not only messages of concern and support but even several inquiries about how to be tested to be a donor.

Because the transplant center will consider and test only one candidate at a time, Betsy and her family now have to wait impatiently for word from the transplant coordinators. Although Betsy is on the waiting list for a deceased donor, that wait is often several years long. A transplant from a live donor might be just months away, typically has a better chance of success, and can last up to twice as long. Naturally, Betsy is fervently hoping for a live donor.

In the meantime, she had an access port surgically created in her arm in readiness for dialysis. Betsy’s condition is stable, so there’s a chance she may never need it–if a donor is approved in time, she could have a preemptive kidney transplant (that is, before she needs dialysis).

Transplant Anniversary: Notes from My Son (My Recipient)

Thirteen years ago this week, my son and I went into UNC transplant center with four kidneys between us. When we left a few days later, we still had four, but he had most of them. He still does. I’ve written here and elsewhere about “our” story, so this is his chance to share his perspective on this momentous experience, which had begun 2 years earlier.

Thirteen years ago I received a kidney transplant from my mother. I appreciate this kind act, but knew she would not disappoint. I also am glad to know that she has benefited from this act, and has become an activist for living kidney donation.

Here’s some background: when I was in college, I was diagnosed with IgA nephropathy. It was discovered in lab work after I had gotten sick with strep. Years later I learned that that was often a trigger for my type of kidney condition. I had no symptoms, though, and was otherwise healthy—I didn’t have diabetes or high blood pressure, which are common causes of kidney failure—and I was thin, with no family history, so the nephrologist said it was something to monitor and take seriously, but wasn’t expected to get much worse, at least not in the foreseeable future. I had regular lab work throughout college.

At my first post-college appointment, the blood test results showed that my kidneys were failing; I learned I would soon need dialysis and then would have to be on it until I could receive a kidney transplant. The doctor first told me I might have to start dialysis in a year, but it ended up being only 3 months. I had just graduated college, and I was nervous but hopeful about the future. Before that appointment I had no idea I had kidney failure, let alone that I’d be on dialysis in 3 months.

Dialysis was the worst experience of my life. It began with two painful insertions of needles into my arm, followed by being connected to a dialysis machine 3 hours at a time 3 days a week. With prep time and post-time, plus another hour for transportation, it was more than half a day. When I got home I just didn’t feel like doing much of anything. I didn’t feel like myself and couldn’t relax. I had time for little else. I felt like my life was under a microscope.

My parents began the process of applying to be donors. My dad was eliminated for having had a kidney stone and my sister was too young at the time. My mom made it through the first round, but the hospital wouldn’t allow her to begin the actual testing because I did not have health insurance that would cover the donor, which is usually part of the recipient’s insurance. Because I was no longer a full-time student, I wasn’t covered by my parents’ health insurance. Had the Affordable Care Act been in effect then, since I was under 26 I could have remained on my parents’ plan. Medicare has an ESRD category for kidney failure patients, but it required a certain amount of “work quarters” to qualify. This was particularly upsetting because having just been in college and now with my health suddenly failing, I didn’t yet qualify. I then had to earn work quarters while on dialysis, which limited how much I could work.

I felt horrible about the awful luck that put me in this situation. I was angry at a health care system that puts such policies in place. I believe I have a right to health care. Had insurance not been an issue, I could have spent 1 year less on dialysis and gotten my transplant a year earlier. And if, instead, my kidneys had failed a year later, this policy might have been moot because I probably would have earned enough work quarters by then.

Meanwhile, for more than a year my family made countless phone calls and wrote pleading letters to the hospital and anywhere we could, hoping I could somehow get a transplant soon. After a lot of advocacy, the hospital finally agreed to take on the costs and allowed my mom to begin the testing. It even agreed to pay for the donation surgery itself if Medicare did not come through, but I accumulated enough work quarters by then.

Paul and my husband, Neil, with me at the 2016 Triangle Kidney Walk in Durham, NC.

I knew that if my mom couldn’t donate to me, there were no other potential donors at the time. So I was really crossing my fingers after each of her tests, knowing that she could be disqualified at any point.

I checked into the hospital the day before the transplant and had dialysis there. When I prepped that night I was mistakenly told I could use the special soap for my hair, and it got in my eyes. They were still stinging the next morning, which naturally increased my nervousness about the transplant.

Transplant day finally came after 1 year and 8 months of dialysis. I vaguely remember being wheeled into intensive care after the surgery. From what I could tell, the doctors thought it had gone successfully. When my dad and sister came in to see me and asked me how I was, my response was “could be worse.”

I recovered at my parents’ house for more than a month. I still had several things attached to my body. I had frequent doctor’s appointments and usually would have something removed/disconnected each time: a stent one day, a catheter another. Slowly, I began to regain my life and at a point feel like I did before the transplant and then, eventually, feel better than I had on dialysis.

By no means is being a transplant recipient easy—there are a lot of things to keep track of, like medicines, appointments, protection from getting sick. There will always be potential hazards, and I’ll always need to take extra precautions. I check expiration dates a lot more closely than before and cancel get-togethers with family and friends if one of them is sick even with a cold. My immune system will always be suppressed to keep it from rejecting my mom’s kidney.

But life as a transplant patient is so much better than the traumatic experience I went through as a dialysis patient. –Paul Offen, Chapel Hill, NC

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

15 Years Is Not Long Enough!

I really hoped I would never need to write this post.

If you’ve checked out my story or many of my blog posts, you know that Betsy Crais, the co-author of my book in progress* and a dear friend, is a kidney recipient from a live donor. Betsy had her transplant 15 years ago and had been doing really well until the last several months.

I am so sad to say that Betsy’s kidney function has declined to the point that she now needs another transplant. I’ve always said that Betsy was the poster child for living a full and productive life with a kidney transplant: not only does she work full time as a university professor and researcher, shunning retirement, but she’s active on grant review panels, committees, and national organizations–on top of being a devoted wife and mother and a lovely person (not to mention a co-author and a donation advocate, of course).

Because Betsy, like her mother and two of her sisters, has polycystic kidney disease (PKD), her two adult children are at risk of developing it themselves. They can’t be considered as donors until they’re well into their thirties, when the disease typically manifests itself. Betsy had fervently hoped to avoid dialysis, but in the absence of a living donor for now, she is having an access port put in soon and expects to start dialysis this summer.

If you know anyone who has ever remotely considered donating their kidney (or maybe the idea of doing it yourself is what brought you to this site), please contact me (carol.kidneydonorhelp@gmail.com). I’ll provide the contact info for the donor nurse coordinator at UNC Hospitals. Betsy is blood type A, but as you may already know, these days it’s not essential to have a matching blood type (see the FAQs). There are lots of options now.

Thanks for anything you can do to help spread the word!

*The Greatest Gift: The Insider’s Guide to Living Kidney Donation.

The Big Ask, The Big Give

After a terrific workshop for kidney patients and their families and friends on Sunday, I was initially inspired and encouraged at all the valuable resources and options available for finding a donor: paired donation (aka “kidney swaps”), social media vehicles for spreading the word, financial assistance for travel and lodging, and sophisticated fundraising plans. These exciting options were unthinkable back when we learned that my son Paul’s kidneys were failing. Yes, I was ultimately able to donate to him in 2006, and so glad I did, but we had no back-up plan if I hadn’t been able to donate. I was relieved to know that someday when Paul needs another transplant, that these options now exist.

Betsy, my co-author,* and I had been invited to be on a panel to tell our story and take questions at the National Kidney Foundation’s Big Ask, Big Give program at the University of North Carolina’s Rex Hospital in Raleigh, NC. It’s understandably hard for most people to go public about such a personal need (brother, can you spare a kidney?), and it’s easier for loved ones to spread the word. The program provided useful resources and concrete advice, with step-by-step plans on telling “your story” or your loved one’s. The cautiously hopeful attendees sounded resourceful and impassioned.

But when I couldn’t fall asleep that night, something was nagging at me, and my excitement turned to righteous indignation. Damnit, people facing kidney failure and their families shouldn’t need to think about fundraising or how to word the biggest ask of their lives. They have enough things on their plate. Soon my righteous indignation turned into outright anger when I recalled at least two attendees’ mentioning that their family member on dialysis had lost their job because of needing to miss so much work. What kind of a system allows these shameful situations to happen?

My inclination was to condemn the companies that had pulled the rug out from under these vulnerable employees, but then I realized that it’s not that simple, of course. Big companies can better afford to be supportive and accommodating in the face of frequent or long absences and the need to hold a job open. What about smaller companies or mom-and-pop establishments that are themselves just getting by? That’s why it’s the system that needs fixing. Sure, not all big companies go the extra mile anyway, so absolutely, let’s give a shout-out to those that do: in my case, RTI International. I benefited from a shared-leave program through which generous, anonymous colleagues donated leave time when I’d exhausted mine.

Humane and compassionate employment support at such a time ought to be a right, not a perk.

Living donors are now protected under the Family and Medical Leave Act (FMLA), but the FMLA applies only to government employers and to private employers with at least 50 employees. (And remember, that’s unpaid leave!) Incidentally, even the Americans with Disabilities Act (ADA), which mandates reasonable accommodations for people with disabilities, applies only to companies with at least 15 employees. I’m not an economist, but it seems like a no-brainer that we need to be providing subsidies or tax breaks to enable small firms to provide paid leave and job protections for donors and recipients.

For example, if federal laws (it shouldn’t matter what state you live in) ensured that no one could lose income (much less their job) to be a living donor, more lives could be saved. Sure, money isn’t the only consideration in someone’s decision to donate, but it’s very often a deal breaker to anyone without sick leave.

The recipient’s health plan covers the donor’s medical expenses, but few insurers, like United Healthcare, include any necessary travel and lodging costs for donors who need to travel far to the recipient’s transplant center. Our tax system should allow credits, not deductions, for kidney patients’ own medical expenses and for reimbursing their donors’ nonmedical expenses.

In a recent post, I described the National Living Donor Assistance Center’s (NLDAC)’s proposal to expand its coverage to include lost wages and related childcare or eldercare expenses. NLDAC currently covers travel and lodging expenses, which is great, but lost wages and additional out-of-pocket expenses affect far more potential living donors than the need to travel. Some living donors spend thousands of dollars to offset their uncovered costs; at the same time, each one saves the healthcare system an estimated $145,000.

No one’s suggesting paying donors for parting with their kidneys–only that it shouldn’t cost anyone money to do so. Expanding donor assistance would go a long way toward making living donation financially neutral. It’s not only the cost-effective thing to do, it’s the right thing to do.

*on our book in progress: “The Greatest Gift: The Insider’s Guide to Living Kidney Donation.”

The Greatest Gift: What’s Inside?

In my last post, I shared how the idea for our book came about and promised some information on what’s inside and why.

Our ultimate goal in writing The Greatest Gift: The Insider’s Guide to Living Kidney Donation, of course, is to highlight the desperate need for living donors and to encourage people who might not have considered donating to think about whether they could be a donor.

Overwhelming statistics—like 100,000 people on years-long wait lists for a kidney and fewer than 20,000 transplants performed each year—become more understandable and meaningful when they are presented in terms of individuals’ firsthand experiences. Besides sharing our own stories and lessons learned, we decided to include other perspectives, with first-person accounts of people personally or professionally involved in the donation or transplant process: donors and recipients, of course, but also family members, a caregiver, a family therapist, a volunteer advocate, a transplant nurse coordinator.

From the beginning, we were on the same page in wanting to provide thorough but accessible, nontechnical and multifaceted information for both donors and recipients. We were mindful that families, friends, and acquaintances of kidney patients are the best source of potential living donors and are certainly the backbone of the patients’ support system. In assisting donors, we reasoned, we would clearly be helping patients, too. We also wanted to reach both readers who already planned to donate or to be a recipient as well as those just exploring the idea. We initially drew mostly on our own experiences in raising issues to be considered at all stages of a donation or transplant. In recent years, as we became immersed in the burgeoning kidney-support and living-donor communities, we were able to learn what “real-world” questions others were raising in workshops, Facebook groups, and online forums.

Within these parameters, we each had our own personal motivation and goals for the book. Betsy was particularly interested in addressing emotional and family issues, how a transplant might affect you personally and the impact it can have on your loved ones; as a self-described wimp who feared the donor’s medical evaluation phase as much as the surgery itself, I wanted to provide details on tests and interviews to support and motivate others who might be similarly hesitant.

Although our experiences overlap, the reality is that potential living donors and transplant recipients have inherently different journeys. Living donation, by definition by a healthy individual, is of course a choice; transplant, on the other hand, though technically a choice, is usually a critically needed and wished-for prospect for someone with end stage renal disease. Dialysis helps patients maintain some of their kidney function while awaiting transplant, but it cannot offer the same quality of life and long-term outcomes as a new kidney. The decision to seek a transplant and the steps in the process are determined by a patient’s individual medical needs and circumstances. The medical issues naturally dominate, so frequently family and emotional considerations are given short shrift.

That’s why we have a detailed chapter on thinking through the decision to donate and the step-by-step process: what to expect and ask along the way. For recipients, we focus on the often-overlooked nonmedical aspects of having a transplant and on the emotional consequences of neglecting these important issues.

Because we fully recognize the enormity of a decision to donate or have a transplant, we encourage everyone to consider the myriad factors that go into such a decision. We hope that having all the information contained in our book will empower readers to be informed consumers because information is power—never more so than in matters of health.

Donate Life Month Quiz: 5 True or False about Dialysis

True or false?

1-People with kidney failure have dialysis every few weeks.

False—For hemodialysis at a dialysis center, the standard is 3 times a week; patients who have some form of dialysis at home may do it 4 to 7 times a week.

2-Dialysis sessions usually last 3 to 4 hours at a time.

True—The average session at a dialysis center is 4 hours on the machine. (That’s not counting the weigh-ins and pre- and post-blood pressure readings. ) Again, people who do it at home may vary the amount of time, including an option of doing it overnight while they sleep.

3-Dialysis can approximate about half of kidney function.

False—As advanced as it is, dialysis accomplishes only about 20% of normal kidney function.

4-People on dialysis can skip a few sessions if they’re busy or go on vacation.

False—Skipping a session very occasionally is not usually a problem, but skipping several sessions is extremely dangerous and can be fatal as toxins build up in the blood. Patients who go out of town can try to arrange in advance to have sessions at a dialysis center at their destination.

5-Dialysis is an equally effective alternative to transplant for someone with kidney failure.

False—When possible, a kidney transplant is by far the better option. After one year of treatment, patients on dialysis have a 20-25% mortality rate, with a 5-year survival rate of 35%. People who receive transplants have a 3% mortality rate after 5 years.*

*University of California at San Francisco. The Kidney Project, https://pharm.ucsf.edu/kidney/need/statistics

5 (Big) Benefits of a Live vs. Deceased-Donor Kidney

If you have a loved one or acquaintance who needs a kidney, you might be wondering why there’s such an emphasis on finding a live donor. Aside from the inescapable reality that there simply aren’t enough deceased-donor organs available (more than 100,000 Americans are waiting for one), live donation offers very real advantages. Here are just five big ones:

1-The wait is much shorter. Kidney patients in the United States may spend 5 to 10 years on the wait list. About 16 patients die every day because they haven’t received the life-saving organ in time. Having a live donor translates to a wait of months instead of years.

2-Because the live donation/transplant can be scheduled—as opposed to waiting for “the call” that a potential kidney match has become available—it can be done under optimal conditions: at the donor’s convenience but also when the patient is at his or her strongest. If one or the other is even mildly sick when the transplant is scheduled, it can be postponed for a few weeks till conditions are just right.

3-The two surgeries are typically done at the same time and often on the same corridor. The shorter time that the kidney is removed from the blood supply—a matter of minutes in such a case—the sooner it will “wake up” and start to function in the recipient’s body.

4-Because the kidney starts to work immediately, the patient often begins to “pink up” and feel better the same day. With a deceased-donor kidney, there’s usually a delay of a few weeks, during which the patient would generally need to be on dialysis.

5-For all of these reasons and more, a live-donor kidney typically lasts significantly longer than one from a deceased-donor: an average of 15 to 20 years versus 10 to 15 with a deceased donor. Those are just averages, though. I know of many recipients of live kidneys who have had theirs for more than 30 years—the record is about 50 years! Deceased-donor kidneys only rarely last more than 30 years.

If you think the benefits of live donation are only for the recipient, watch for my upcoming post on the benefits of live donation for the donor!

Living Donor Champion Program #1

I spoke to my first group of prospective kidney recipients and their “champions” last weekend at the University of North Carolina’s transplant center in Chapel Hill. I was delighted to see how many people had brought along their spouse, siblings, and/or children to learn how to tell their story and spread the word about the person’s urgent need for a kidney.

This is a terrific program, and I only wish it had existed when we were contemplating my son’s transplant. Asking someone–even a relative–to part with a bodily organ does not come naturally to most people. So the idea of teaching one’s support team about how kidneys work (or fail) and live donation, and how to spread the word, is an inspired and effective approach.

You may have seen newspaper photos of people publicizing a need for a kidney (for themselves or a loved one) on a billboard or banner or tee shirt, complete with blood type and telephone number. But for every one of these novel attention grabbers, tens of thousands wait silently for someone to come forward.

My son was one of the lucky ones (he got a kidney from me). So was Betsy, my co-author (The Greatest Gift: The Insider’s Guide to Living Kidney Donation). She got hers from a colleague at UNC, where she teaches. We shared our stories with the attendees and answered questions. (That’s me on the right.)

I told about donating to my son 12 and a half years ago. I hope my story resonated with these “champions,” because they’re also potential living donors, of course. I told them a secret: living donors aren’t necessarily brave. I certainly wasn’t. In fact, as I told them, I’m a wimp. It’s not just that I don’t like needles–who does?–I don’t like thinking about or picturing medical procedures. My sister once made the mistake of asking me to come along for moral support when she had oral surgery. I waited in the hallway so I wouldn’t risk glimpsing anything, but I could still hear what was going on. When my sister asked the surgeon to explain what he was about to do, I started feeling faint as I listened. The nurse had to run out of the room to pick me up off the floor. My sister was not amused.

Betsy told about her transplant, which happened 15 years ago. The prospective recipients could certainly relate to her decades-long experience with chronic kidney disease, which runs in her family. Like her mother and two of her siblings, Betsy has polycystic kidney disease, PKD.

The attendees had come from all over the state for this 2-hour program. One couple told me they’d had a 5-hour drive. One gentleman who’d brought his sister and brother with him said that they both were being tested as donors. A sibling offers a great match. He was concerned that his sister had been told to lose a lot of weight before she could be approved to donate. I told him that transplant centers typically will work with such prospective donors and usually have them meet with a nutritionist.

Many of the attendees had lots of questions and left with answers, I hope, but no doubt with more questions. Maybe some of them found their way to this site and are starting to get those answers. In any case, I wish them all well.

Betsy and I look forward to participating in another program in June.

Talking to Potential Living Donor Champions

What are living donor champions? They are friends and family members of someone who needs a transplant who learn how to effectively spread the word to potential donors. Let’s say you know someone who needs a kidney, but they’re uncomfortable for any number of reasons about coming out and asking someone they know–much less someone they don’t know–to donate one of their kidneys.

Back in 2004 when we first learned that my son would need a transplant, the idea of asking someone if they would donate their kidney was beyond awkward. (People who have trouble asking for a ride to the airport don’t even know where to begin to ask for a bodily organ!) Though social media existed then, it was mostly a social thing for teens and 20-somethings–hardly a vehicle for something like life-saving/life-changing requests. Fast forward to 2019: Facebook, Twitter, and other platforms have changed the whole donation landscape, which dovetails perfectly with living donor champion efforts.

Betsy Crais, my co-author (The Greatest Gift: The Insider’s Guide to Living Kidney Donation), and I are going to speak at a few such programs over the coming months. We’ll start with one this weekend at the University of North Carolina’s kidney transplant center. That’s only fitting, because it’s where I donated a kidney to my son, and where Betsy received hers from a UNC colleague. We’re going to tell our stories and take questions from attendees.

I’m so looking forward to it. Watch for a post on the event!