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

Guinness Living Donors Record!

Woohoo! Got my commemorative living donors rally tee shirt in the mail, and it has my name on it with the other Guinness record holders! If you zoom in, you just may be able to find my name in the upper left quadrant–alphabetized under “C.”

What a memorable weekend that was! Several living donors gathered at the Bean again this year for an informal reunion. On one hand, I was sorry to miss it–I would have loved to see so many people I met last year. On the other hand, though, I’d kind of like to keep that warm memory special. A reunion couldn’t possibly capture the excitement and the emotion, which I tried to describe in a Facebook post soon after it.

Donate Life Month Quiz: 5 True or False

Here are a few important “facts” about organ donation. Test yourself—and let me know how you did! (Not to worry–I’ll grade on a curve.)

1-Most of the 113,000+ people on the national waiting lists for an organ from a deceased donor are waiting for a heart.

False. More than 80% of them are waiting for a kidney.

2-In the United States, the wait for a kidney from a deceased donor is a matter of months.

False. In many areas of the country, it’s 5 to 10 years.

3-Every year a few hundred people die because they didn’t receive a lifesaving organ in time.

False. About 6,500 people on the lists die while waiting for a kidney each year.

4-A large percentage of people in the United States can be organ donors when they die.

False. Only about 3 in 1,000 people die in such a way that they can be organ donors: generally, in a hospital following a trauma such as a car accident. That’s just 0.3% (yes, I had to look it up).

5-Most living donors are men.

False. Nearly 2/3 of living donors are women.

So, if you’re not already a registered organ donor, you needn’t wait till you renew your driver’s license. You can do it online right now at registerme.org. (There you’ll also find more facts about donation.) And if you’d ever wondered why the wait for a deceased-donor organ is so long, and why donation advocates hope that more people will consider being live donors, now you know the bottom line. There simply aren’t enough organs available.

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.