Donate Life–In Any Way You Can

As a living donor, I’ve chosen to focus the majority of my posts on the lesser-known subject of living donation (most recently, preconceived notions about donors). I haven’t written much about the other kind of organ donation—that is, after death. It’s one of those sobering subjects that often make people uncomfortable (I used to be one of them).

That said, I’m going to give it a try here anyway and hope that you’ll keep reading. If you’ve read many of my blog posts, you probably have noticed that no matter what I’m writing about, I prefer a light touch and maybe go for a smile or two. So I’m not going to berate anyone who has not already signed up to be a donor. And I promise you I’m not going to drone on about how important it is and how it’s our duty to society yadayadayada.

You already know that, right? (If not, I might note here that more than 100,000 people in this country are waiting for a lifesaving organ—most of them for a kidney—and about 17 people die each day because they didn’t get one in time.)

So what am I going to do here? I’m just going to ask a few simple questions:

1-What percentage of people in this country do you suppose die in a way that even makes it possible for their organs to be donated?

2-If a registered organ donor is dying in a hospital, do you imagine that the doctors and nurses will throw in the towel that much sooner?

3-Are you afraid you might not be “completely dead” when they get ready to recover your organs?

Answers:

Less than 1% (If you’re stunned by that news, you’re not alone. Years ago my guess would have been less than half, but maybe 20% or 30%, but I honestly had no idea.) In other words, the pool is very small.
First of all, they don’t even know—or care—whether you’re a donor or not. Their only concern is saving you, their patient (remember “first, do no harm”?). Secondly, transplant teams don’t get involved until after death is pronounced. In fact, most deceased donors actually come from hospitals that don’t even have transplant centers.
Lots of tests are done—even more than usual–to make absolutely sure that someone is in fact brain dead.

So, if you’ve read this far, thank you! If you weren’t already signed up, I hope this post has given you something to think about and maybe you’ll go to organdonor.gov–or any of a dozen or more sites (don’t wait to renew your driver’s license!)–to register. If you’re already registered, please share this post with others who may not be or who might know someone who would like to share it.

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

Another Donate Life Month Quiz

At the end of this special month, I came across a brief Donate Life Month Quiz I posted a few years back. Happy to see that it’s still accurate. I thought I’d add a few updates:

1–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.

2–To qualify for financial assistance from the National Living Donor Assistance Center, (a) a donor has to be related to the recipient, (b) you can’t be a nondirected (aka altruistic) donor, and (c) you and your recipient must be U.S. citizens.
All false. If you’re not U.S. citizens, however, both recipient and donor must be “lawfully present residents.” As I explained in my last post, NLDAC has greatly expanded its assistance for living donors, and more people qualify than ever before. Be sure to check out the guidelines.

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.

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.

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

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.