Month: May 2019

How “The Greatest Gift: The Insider’s Guide” Idea Originated

As you may know, some of the information for this site comes from the book The Greatest Gift: The Insider’s Guide to Living Kidney Donation, which I am writing with Betsy Crais, a live-donor kidney recipient. As we come into the final lap of the book’s marathon preparation, I thought it was time to share its origins with you.

Betsy and I met nearly two decades ago when our daughters were in the same Girl Scout troop (we bonded when we shared a pup tent during a camping trip). Some years later we discovered that we also shared a passion for encouraging living organ donation, which has resulted in this book.

the 2 authors, women, sitting in front of a sign that says "Ask the Expert"
Elizabeth (“Betsy”) Crais, left, and me at the University of North Carolina’s Live Donor Champion program, Chapel Hill, NC, on March 24, 2019.

How did we go from tent-mates to co-authors? I’m glad you asked. Read on.

When Betsy first faced declining kidney function and had to consider dialysis and ultimately a transplant about 15 years ago, the only books she found to inform her were renal-focused cookbooks or medical texts about kidney diseases, with short chapters about her condition (polycystic kidney disease, or PKD). There was little available on what to expect before and after dialysis or transplant, and certainly nothing that delved into topics related to emotions or family relationships.

Fortunately for Betsy, she at least could talk about her disease with her mother and two of her siblings, who also had PKD. Through them, she could at least get some of her personal questions answered. Later her sisters also came to help her when she had her surgeries. Although her siblings’ care was a great blessing, the best part was having someone there who had been through the experience and could guide her expectations. 

In contrast, when I faced the opposite situation a couple of years later—contemplating being a living donor for my 25-year-old son, Paul—I knew no one who had donated a kidney. I had dozens of questions and could ask the professionals some of them but had no one to advise me who’d been through the experience. For Paul’s questions, fortunately our family could call on Betsy, who talked to Paul to help allay his and the rest of the family’s concerns. Most important, Betsy shared some encouraging examples of how her quality of life had improved post transplant compared with her time on dialysis.

Not long after Betsy’s transplant and recovery, she began thinking about her difficult experiences and the silver lining of having family members with PKD who could be her own invaluable support group. The awareness that most people, like me, do not have that critical support prompted us both to want to write a book that could help others be more informed about what to expect in the donation and transplantation processes. Both of us had been surprised and frustrated to find so little practical, nontechnical information and support in those pre-Google days.

Early on Betsy drafted an outline and started thinking of people who might contribute various chapters, and Carol wrote an occasional op-ed piece on being a living donor. But because of day-to-day obligations it would be several more years before Carol reached out to Betsy to talk concretely about an idea for this book. 

Neither of us knew that the other had already been thinking along the same lines.

Next time I’ll provide some specifics about The Greatest Gift: The Insider’s Guide to Living Kidney Donation and share with you our goals for the book.

Expanding Aid to Living Donors: Dear Committee Members

May 20 was a big day. The committee that advises the federal agency with the power to expand financial aid to living donors held a meeting and heard a dramatic plan from the National Living Donor Assistance Center (NLDAC). The plan would not only markedly expand eligibility but would extend coverage for significant living donor costs like lost wages and childcare and eldercare expenses. Those essential expenses so often stand in the way of would-be donors’ acting on their desire to donate (and save a life).

Photo by rawpixel.com on Pexels.com

The Advisory Committee on Transplantation accepted public comments in advance of the meeting and dedicated some meeting time to hearing from people supporting expanded benefits for live donation. I prepared my comments and sent them to the committee last week. During the online meeting, I listened excitedly to the impressive NLDAC presentation and patiently waited to speak. Alas, because of technical difficulties and the committee’s being behind schedule, most of us never got to deliver our remarks live. This is what I was going to say:

Dear Committee Members:

I’m a living donor in North Carolina. Thirteen years ago I donated my kidney to my 26-year-old son. We were fortunate to live close to one another and near the UNC transplant center. I had a smooth recovery and could have gone back to work in 2 or 3 weeks if it were just a matter of my own health. But like so many other living donors, my recipient was a family member, so I was also a caregiver; we were all devastated when our son needed emergency surgery a week after his transplant. His recovery was slow, and he lived with us for about 2 months. I missed work for much of that time.

My husband and I shared family responsibilities that included our other child–a teenager with her own needs–and my elderly father, whom we had moved down to our town. We both maxed out our paid leave time. With my job, again I was fortunate: I had a supportive supervisor, short-term disability leave, and an employer with a shared-leave policy that enabled colleagues to donate their leave time. I cobbled together partial coverage. My husband did not have the benefit of shared leave donations. Not many potential living donors have such luxuries. In fact, many of the people on the transplant lists have low incomes, and many of their families and friends have little ability to ride out periods of missed pay. So they languish on the wait lists still longer.

NLDAC’s coverage of travel and lodging expenses for donors has saved lives by enabling people to donate who would not have been able to otherwise. The prospect of lost pay affects—that is, discourages—even more potential donors than travel issues do. My son was so lucky to have a live donor. If I hadn’t been able to donate to him after he’d spent nearly 2 years on dialysis, he could have faced another 5 years tethered to a machine 3 times a week, draining his energy, his time, and his spirit. Incidentally, the 5-year survival rate on dialysis is only a little more than a third.

 At an extremely difficult time for our family, we at least had everything going for us: our location, adequate resources, and a supportive employer. I implore you to help someone else’s son avoid that long, dangerous wait for a donor by raising the income cap and extending benefits to cover lost wages and related costs. Thank you.

I’ll have more details on the NLDAC recommendations when we learn how HRSA (Health Resources and Services Administration, part of Health and Human Services) decides to proceed.

WELD-What Do Living Donors and Transplant Folks Talk About?

When living donors (women) and transplant professionals (men and women) get together, what do they talk about? Well, if a recent meeting of a local WELD (Women Encouraging Living Donation) chapter at my house is any indication, assorted animated discussions could cover the following:

Transplant surgeons Dr. Aparna Rege, bottom left, and Dr. Bradley Collins of Duke Transplant Center, Durham, NC, with a few local WELD members.
  • Spreading the word of the urgent need for living donors to reduce the 5+ year wait for a kidney for those on the transplant wait lists
  • Transplanting pigs’ kidneys to humans: logistics and ethics
  • Using drones to transport a deceased-donor kidney
  • A live kidney being put with the plane’s cargo but a heart going in the cockpit with the pilot
  • Hamilton, the musical
  • Managing kidney donors’ pain effectively with a combination of meds to reduce or even eliminate use of opioids
  • Taking part in The Big Ask, the National Kidney Foundation’s program to help kidney patients’ family and friends help the patients find a living donor
  • Some African Americans being wary of organ donation, specifically, but sometimes the health care system, generally
  • A transplant center’s setting up a paired donation program, which enables donors and recipients who are not a good match to swap with another pair so as to find a successful match for each pair
  • Solo camping with your dog
  • Comparing current and brand-new rules on allocation of livers from deceased donors
  • New approaches to preventing post-donation constipation in donors
  • Signing up as an organ donor whether or not you choose to have a little heart on your driver’s license
  • A grieving family arguing about whether to honor a young person’s wishes to be an organ donor
  • A young donor concerned about pregnancy, wanting to participate in a study to help provide the answers that elude her now
  • Comparing two surgeons’ hand sizes
  • Camping with the Girl Scouts

It was getting late for a weekday evening, and everyone else had a drive home, but I’ve no doubt we could have found lots more to talk about.

Good News for Living Donors: Financial Assistance!

You may already know that the costs of the donor testing and surgery are covered by the recipients’ insurance. That’s true whether they have Blue Cross or any private insurance, Medicare, or Medicaid (usually—every state is different). That’s great, right? Absolutely, particularly if you have adequate paid sick leave and no additional childcare or travel and lodging expenses, that is, if the recipient’s transplant center is near you. And, fortunately, job security is now guaranteed for living donation under the Family and Medical Leave Act (FMLA).

But what if you don’t have much if any personal sick leave? The good news is that there are growing options. If you’re a federal employee, you’re entitled to up to 30 days paid leave a year for living organ donation. Most states have similarly begun to offer leave for their state employees, but not necessarily paid leave, so if you’re a state employee, ask the transplant center about the specific policy in your state. More than a dozen states are also starting to extend such benefits to private employees. The National Kidney Foundation has a terrific state-by-state list of donor leave laws and tax deductions/credits for living donors.

In general, in recent years (long after I donated to my son in 2006), several new sources of financial assistance have popped up, and several old sources are expanding eligibility and the expenses they cover.

Here are a few to check out:

*National Living Donor Assistance Center  A federally funded program, NLDAC provides substantial financial assistance to potential living donors for out-of-pocket expenses for travel, food, and lodging, and assistance to low-income donors who do not have other compensation or reimbursement. 

Donor Care Network Living donors who make $62,000 or less per year may be eligible for reimbursement of up to 4 weeks of lost wages. Also available: travel and lodging reimbursement, life and disability insurance, and legal representation. The program works with 12 transplant centers across the United States, so donors can get testing closer to home if needed.

Living Organ Donor Network Some transplant centers participate in this initiative that’s part of the American Foundation for Donation and Transplantation. It provides limited life/disability insurance to the living donors who get care at participating centers.

American Living Organ Donor Fund (ALODF) A nonprofit organization founded by a kidney recipient, its mission is to protect living organ donors from out-of-the ordinary medical and financial hardships through education and financial aid.

American Transplant Foundation ATF offers limited donor assistance grants, through a few transplant centers.

Renewal This orthodox Jewish charity provides information and resources for donors and recipients.

American Kidney Fund This huge nonprofit dedicated to fighting kidney disease mainly helps kidney patients but also provides small grants ($100/year) to living donors. It’s not much, but it’s something.

American Society of Transplantation (AST): Live Donor Financial Toolkit Although this is not a source of funds, it’s an invaluable practical resource to help potential donors in the donation process. Discusses costs in detail, what to expect, and risks; also offers ideas and links.

State-specific nonprofit programs are popping up all the time. Here are a couple of major ones. Ask your nurse coordinator about programs in the state where you or your potential recipient resides.

Georgia Transplant Foundation This Georgia nonprofit was founded in 1992. Living donors can apply for a financial assistance grant if either the donor or recipient resides in Georgia.

Iowa Anatomical Gift Public Awareness and Transplantation Fund Iowa residents who are donors can apply for assistance with certain expenses, up to $4,000.

* At this writing there is a movement in Congress, launched by Washington Rep. Jaime Herrera-Beutler, to expand NLDAC’s coverage to include lost wages. Rep. Herrera-Beutler’s husband donated his kidney to their toddler a few years ago. Contact your representative and ask him or her to support these important efforts. Be sure to share your own story with them. 

If you know of other important sources of financial aid for living donors, please let me know: carol.kidneydonorhelp@gmail.com

Who Says Donate Life Month Is Over? It Needn’t Be!

Now that April is over, so is Donate Life Month. No more special themed events, signs, and PSAs. But the need for organ donors is hardly over: about 114,000 people are still spending years on national waiting lists for a lifesaving organ. Even though it’s at an all-time high, organ donation still falls way behind the need. About 6,500 people on those lists die each year simply because they didn’t get the organ they needed in time. About 16 people die each day because they didn’t get a kidney in time. Sixteen people.

What can we do about it?
First step, of course, is to sign up to be an organ donor after we die. If you’re not already registered, no need to wait for your driver’s license renewal. Just go to registerme.org or organdonor.gov. You can even do it on your iPhone’s health app.

Second step is to tell your family you did. People unfortunately often neglect to make their wishes known to family members, who must confirm the decision and, if there is any ambiguity, at a time of grief, can sometimes overrule the registration.

Third step is to spread the word. Donate Life Month or not, tell everyone you know about the need. I’m always surprised at how little the general public is aware of the crisis.

Fourth step is obviously the hardest, but it’s on the rise and holds the key to shortening the wait for thousands of patients: consider becoming a living donor. A healthy person can donate a kidney (by far the most common living donation), as I did, or a part of their lung, liver, intestines, blood, or bone marrow. I’m not suggesting such a decision be made lightly. Just take a small step and educate yourself on the subject–check out the Resources on this site–and see where it goes.

I just bet you’ll find a number of surprises, so then share what you learn with everyone you can. Maybe you’ll prompt someone else to donate.