Insider's Guide to Living Kidney Donation (eBook)

Chapter 1:
Why We Need More Living Donors

An Ohio couple TRANSFORM their van into a cruising billboard, a woman in Pennsylvania posts her blood type on Facebook, a man offers thousands of dollars online.… These are just a few of the ways people try to find living kidney donors in this country.

Why resort to such unusual steps? The answer is simple. Today more than thirty million Americans have chronic kidney disease. Nearly 100,000 of them are on national waiting lists for a kidney from a deceased donor. About every ten minutes another person is added to the list. Meanwhile, nearly half a million people, many of whom may never be able to have a transplant, receive dialysis.

With fewer than 25,000 kidney transplants performed each year—from both deceased and living donors—most of the people on the list wait several years for a kidney: up to five to ten years in some states. That means that at least sixteen people in the United States die every single day simply because they did not receive a kidney in time.1

It doesn’t have to be this way. Kidney transplants are hardly new—surgeons have been performing them for more than half a century. So why are they still helping only a fraction of those in need?

No Simple Answers

The principal reason for the long wait and the tragic deaths that result is obviously a shortage of available kidneys. But numerous factors account for that shortage. In the United States, only about 3 out of every 1,000 people die in a way that makes traditional organ donation possible—typically in a hospital following an accident—so the pool is very small. That is why we organ-donation advocates have long pushed for changes in our system of organ-donor registration. Rather than letting people opt out if they don’t want their organs donated after their death, as is the policy in a growing list of countries, we have an opt-in system: you must select “yes” for organ donation when you apply for a driver’s license or register online as a donor. In the United States 60% of people are now registered organ donors—even though 90% of adults in a national survey said they favor organ donation. In contrast, in Austria, for example, where organ donation is “presumed” unless someone opts out, about 99% of people are donors. It’s not that simple, of course. An opt-out system is only as good as the built-in supports a government creates along with it,2 so the change alone would not be a panacea but at least a start.

Persistent myths surrounding organ donation, such as the notion that life-saving measures might be withheld from a registered donor, surely compound the problem. Let’s be clear: when someone is dying in a hospital, the doctors do not know or care whether that person is a registered organ donor. They have all sworn an oath to do no harm, so they will do everything they can to try to save the patient. If the person dies, the transplant team—a completely separate unit that has nothing to do with regular patient care—is not involved in organ donation until after the family gives consent. In fact, most deceased organ donors come from hospitals without transplant teams.

Whatever the reasons for the shortage, until the proportion of people who register as organ donors increases considerably or an artificial kidney becomes a reality, our best hope for reducing the tragic kidney shortage is through living donation. Because most of us are born with two kidneys, and we need only one functioning kidney, living kidney donation is the most common living organ transplant.

Dramatic strides have been made since the first one was performed in Boston in 1954, but we’re always surprised that most people still don’t know very much about living donation. This book’s co-author, Carol, certainly didn’t before her son’s kidneys began to fail and she wanted to donate to him. And co-author Betsy didn’t until she needed to find a kidney donor herself.

Advantages of Recipient Having a Living Donor

Most people don’t realize that it’s far better to get a kidney from a live donor than to have one from a deceased donor. With more live donors, not only could we ease the organ shortage, we’d see improvements in the recipients’ recovery time and long-term prognoses. A live-donor kidney transplant has a greater chance of succeeding, partly because it has a better chance of working immediately. Also, because of the living donor kidney’s usual quick start, the patient rarely needs to continue dialysis while waiting for the new kidney to be up and running, as is more often the case with a kidney from a deceased donor. As a result, both Betsy and Paul, Carol’s son, like so many other live-donor kidney recipients, reported feeling better almost immediately after their transplant.

Perhaps best of all, a living kidney typically lasts much longer than one from a deceased donor: an average of fifteen to twenty years versus ten to fifteen years from a deceased donor. The jaw-dropping record is about fifty years for a living-donor kidney recipient. Deceased-donor kidneys rarely reach the thirty-year mark.

Having a living donor also usually offers the luxury of being able to carefully consider the date for the transplant surgery. It can be scheduled for the best time for both donor and recipient. If either of them is not well on the planned date, the surgery can be rescheduled for a few weeks later to ensure that the donor is in optimal health and the recipient is as strong as possible.

With a deceased-donor kidney, it’s a game of chance as to when a patient will get “the call” that a compatible kidney is potentially available. Let’s first explain what it means to be compatible, or to find an acceptable “match.” Two different issues are involved: blood type and tissue type. The standard A, B, O, or AB blood types may be familiar from high school biology class, with type O being the universal donor. If you are a blood type O, like Carol, anyone can receive your kidney based just on blood type; if you are a type AB, you can receive anyone’s kidney based on blood type. Unfortunately, if you are a type O, as Carol’s son is, you usually can receive only from a type O donor. With few exceptions, a blood type A recipient can receive a kidney from an A or O donor, and a type B recipient from a B or O donor.

The second kind of compatibility for transplant is “tissue typing,” known as HLA compatibility. It’s the reason that a certain blood test, a “cross-match,” is always required before a transplant can be performed, to ensure that the recipient doesn’t have antibodies against that particular donor’s organ. We’ll talk more about that later when we get to chapter 3, “The Preliminaries.” Some “highly sensitized” patients have higher levels of antibodies against nearly all other people, so finding a compatible donor for them can be extremely challenging.3

Once a patient gets the call, with no warning after being on the waiting list for years, he or she may need to hurriedly arrange for a possible one- to two-month leave from work and attend to family responsibilities such as child- or eldercare. Candidates usually need to be ready to go to the hospital the same day they are contacted, to allow time for testing, but of course not all kidney patients live near a transplant center. Although a kidney can safely be stored for twenty-four to thirty-six hours, the shorter the wait until it’s transplanted in the recipient’s body, the better: the lower the chance it may not function, the quicker it will usually “wake up” and function, and the better its chances for long-term survival. That window may allow ample time to put the kidney on a flight to anywhere in the country but woefully little time for candidates to deal with major obligations.

Even after getting the call, there is no assurance that the patient called will actually be able to have the transplant. Critical blood testing, including the cross-match, must be repeated. Because there are no guarantees, when a kidney offer is made at least one alternate patient is always called, too. Betsy has two sisters who, like her, have had kidney transplants. The first time that her sister Barbara got the call, she alerted her family and friends that the big day had arrived and then excitedly showed up at the hospital expecting to receive the kidney for which she’d waited years. Instead, after more testing and mounting anticipation she learned that another candidate ahead of her on the waiting list had had acceptable testing and would receive that kidney. She returned home distraught, and she resolved that whenever she got another call, she wouldn’t inform family and friends until it was a sure thing. Some unfortunate kidney patients may repeat such a scenario seven or eight times before they get a kidney transplant.

Expanding Options

Almost every week brings news of advances that could make it possible for more people to find a compatible kidney and have a transplant. Thanks to technology, living kidney paired donation, in which unmatched donor-recipient pairs “swap” donors, has become common. And medical research is making it possible to increase use of certain deceased-donor organs that were once discarded. For example, in the last few years the...