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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.

Donate Life Month Fun

As part of National Donate Life Month events, I joined Donate Life NC exec director Deanna Mitchell Sunday at Rush Cycle in Morrisville, NC. In keeping with the month’s theme of Life Is a Beautiful Ride, Rush was offering free cycling classes and gave us a prominent spot to talk about organ donation and share our story of being living donors. I was delighted at the enthusiastic reception and animated conversations with the cyclers (I’d wondered if they’d just ignore us, frankly). See the back of our tee shirts–we’re also proud WELD members: that’s Women Encouraging Living Donation. And check out the photo from our WELD meeting in Durham Tuesday https://tinyurl.com/y2fvbe8x! One of the members had just donated a couple of weeks before!

That’s Deanna above on the right. Besides info, we gave out goodies: protein bites, oranges, dates, sunglasses, trail mix.

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!

A Donate Life Month Quiz

To be a living kidney donor, you have to be (a) young, (b) a family member of the recipient, (c) brave, (d) all of the above, or (e) none of the above?

(a) Wrong. I was 58. In fact, more than a third of living donors are over 50.

(b) Wrong. Though the largest group of donors are indeed family members, unrelated donors are an increasingly large portion of living donors.

(c) Wrong. “Brave” is certainly not a word ever used to describe me! As a self-described wimp, I relied heavily on my supportive and caring transplant team, who did all they could to accommodate my needs and concerns. The experience proved to be much easier than I expected (certainly easier than childbirth!).

(d) Wrong.

(e) Bingo! Happily, none of the above.


April Is National Donate Life Month!

Whether you’re a living kidney donor (like me) or a registered organ donor with a little heart on your driver’s license (also like me), thank you for giving someone a chance at a healthy life! As you may know, more than 100,000 people in this country are on years-long waiting lists for an organ (most of them in need of a kidney). Registering to be an organ donor is easy and quick: just go to http://organdonor.gov, and then be sure to tell your family of your wishes. National Donate Life Month shines a spotlight on organ donation in the hopes of shortening the long wait for a life-saving organ.

So many people can be saved from just one registered donor with two kidneys, a liver, two lungs, a heart, a pancreas, and intestines–and, since 2014, even hands and faces. However, even if everyone registered, there just aren’t enough deceased-donor organs to go around. Did you know that less than 1% of people die in such a way that their organs can be used (typically in a hospital following an accident), though, fortunately, corneas, tissues, blood stem cells, and bone marrow can still be used? That’s why it’s so important to have as large a pool of potential donors as possible.

See my little heart on the right? You can have one, too.

It’s also one of the many reasons that live donation is so important. (We’ll talk more about the benefits of live donation in another post.) Every time someone on the list gets a live donor–and can be removed from the wait list–it shortens the wait for the others on the list. Please help save a life by registering to be an organ donor.


Live 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!