In 1980, the Uniform Determination of Death Act passed in the legislatures of all fifty U.S. states, declaring brain death legally equivalent to death. This legislation has been critical to the success of organ transplantation. Brain-dead donors give us the most organs, enable the best outcomes, and offer surgeons the most controlled scenario to perform organ transplantation. Brain death’s being equivalent to death has been the law of the land here in the United States, and in most countries, ever since, and in general the public has accepted and agreed with that.
15
Healthy Donors
Do No Harm
Practice two things in your dealings with disease: either help or do not harm the patient.
— EPIDEMICS, BOOK 1, HIPPOCRATIC SCHOOL
The ordinary man is involved in action, the hero acts. An immense difference.
— HENRY MILLER
I think by and large a third of people are villains, a third are cowards, and a third are heroes. Now, a villain and a coward can choose to be a hero, but they’ve got to make that choice.
— TOM HANKS
There is no other discipline in health care in which we perform an operation on someone who has no medical diagnosis, no identifiable pathology, who is by definition entirely healthy and will get no medical benefit and even some clear harm from the procedure. There is even a chance these patients could die, although this is rare (about three in ten thousand for kidney donors). Yet caring for these particular patients is where I get the most satisfaction, feel the most pride, and lose by far the most sleep.
While the risk of death is low, other things can happen. We can nick their bowels (I have), rupture their spleens (I have), get into the bladder (done that), get into bleeding (of course I have), have to convert rapidly to an open surgery (yup), and make a hole in their diaphragm (sadly, yes). All these mistakes are fixable (and I fixed them all).
After surgery, the donor can develop high blood pressure because of his donation, and even down the road can go into renal failure (about a 1 percent chance, which is lower than the general population but higher than if they hadn’t donated). So, how do donors feel about these risks, and the idea of donating in the first place? Most of them are grateful to have the opportunity.
The National Kidney Registry (NKR) is an organization that facilitates paired kidney exchange. When patients in need of transplants have living donors who can’t give to them directly (because of blood type incompatibility or antibodies present in the recipient blood), the NKR facilitates swaps. Often this involves more than two pairs—there can be three, four, or even more. This complex exchange is aided by computer algorithms. These donors and recipients may reside in different cities, sometimes across the country. In these scenarios, I may go to the operating room in Madison at 6:00 a.m., take a kidney out, and send it on a plane to New York. Conversely, someone in California may take one out in the evening and send it on its way to the East Coast on a red-eye. In a second scenario, when a humanitarian decides to donate a kidney to help a stranger in need, this can start a chain. One woman’s kidney can go to a recipient whose incompatible donor then donates to someone else, whose donor donates to someone else, and so on. The chain can go back and forth, crisscrossing the nation for weeks on end, until it finally breaks. The longest chain the NKR has had to date included thirty-four donors and thirty-four recipients, involved multiple transplant centers across the country, lasted approximately three months, and (interesting for us) ended at our center. It started with one person who wanted to give the gift of life. How amazing is that?
At an NKR fund-raising gala in New York City a few years ago, a young woman got up and took to the microphone. She seemed a bit nervous at first, but then delivered a moving, unforgettable speech: “To all you doctors out there, you guys get to save people’s lives every day. But for me, I don’t get to do things like that. I have a pretty normal life. But one day last year, I donated a kidney, which started a chain that saved more than twenty people. Sure, I was in the hospital a few days, and felt sore for a couple of weeks. But I can honestly say it was and will always be the best thing I have ever done in my life. I think about it every day.” This young woman was truly heroic.
When I see potential donors in my clinic, once I have gone through their medical history, examined them, and looked over their labs, I typically have a conversation with them about the risks. I tell them that most patients do great—almost all, actually—but that there is always the risk of this or that. And most patients say, “Sure, I get it. It’s surgery.”
I struggle with using percentages. If I tell a patient he has a 1 percent, even a 5 percent, chance of dying on the table, most patients will say, “Great, that’s not going to happen to me.” But for me, that number is high. It means that some of my patients absolutely will die on the table. Of course, this is higher than the risk our donors face but is closer to the risk of liver transplant recipients.
Nancy Ascher, chairman of surgery at the University of California–San Francisco and one of the premier transplant surgeons in the country, gave a kidney to her sister a few years back. A couple of days after the surgery, Dr. Ascher had to be returned to the OR emergently: her bowel had gotten caught in one of her incisions and become obstructed. Uncommon, but pity the poor surgeon who operated on his chairman!
When Dr. Ascher talks about her donation, despite knowing all the data better than anyone, she still describes the experience as a “leap of faith.” Regardless of the statistics, you are putting your life in someone else’s hands. If something goes wrong—if a harmonic scalpel strays too far one way or another—your life can be changed forever. Dr. Ascher does not regret her decision. On the contrary, she is proud she did it. She now believes in the concept of living donation more than ever, but her experience changed how she talks to patients, and how she thinks about risks and recovery.
Here’s an example of why the numbers don’t always affect a donor’s decision. A potential donor came to see me wanting to donate a kidney to his wife, the love of his life, the mother of his children. He had been turned down by a major program due to medical reasons. He didn’t have any absolute contraindications—he was not diabetic, didn’t have heart disease, didn’t have any cancers—but he was obese, his blood pressure was high, and he had a history of smoking. Each one of those things could have increased his risk of having a problem with his remaining kidney someday.
When I first saw this man, I had my doubts, too. But he told me, “I know you guys think I’m a little more high-risk than your average donor. I get that. But you’ve gotta help me. This is something I really want to do. My wife is my whole life. Our family doesn’t work without her. She has done so much for me. If you let me do this, I will thank you forever. I’ll sign any form you want. I promise I won’t sue you. If, down the road, something happens to my other kidney, and I go on dialysis, it will be worth it for me. I have no hesitation.”
What do you say to that? This man seemed to have grasped the data, understood the risks I’d outlined for him. Wasn’t it his body? How paternalistic was I supposed to be? Of course, it was possible for someone to make a bad, even an unreasonable decision for himself to protect someone he loved. Was there a risk that was so high that we would have to say no? We wouldn’t let mothers and fathers donate their hearts to their children, even though many patients would be willing to do this.
In the end, I let the guy donate, but not before giving him my standard line. It’s not necessarily data-based, but I believe it: “If you donate and stop smoking, you may actually be healthier than if you don’t donate and keep smoking.” (Of course, the worst scenario was the most likely one: that he’d donate and keep smoking.)
His surgery was difficult—he was quite big—and he had some tough days during his recovery. But ultimately, everything went fine (for now). (His wife did great, too.) Back in my clinic about a month after the surgery, I asked him how he felt about the whole process. “Doc, this is the best thing I have ever done in my
life. Sure I had a few bad days, but I have my wife back. I will never be able to thank you enough for what you did for my family.” He gave me a big, warm handshake. His thick, ruddy hand enveloped mine. It was the hand of someone who had done physical labor all his life, a hand that would provide for his family no matter how much it took from him.
He got one thing wrong. I’m not the one who did something for his family.
REMOVAL OF A donor’s kidney is done laparoscopically, so it’s a bit different from the other procedures I have described. Once the patient is asleep on the OR table, she—women donate far more than men; yet another example of how women are the superior sex—is turned on her side. If we are taking the left kidney, we place the patient on her right side, and vice versa. More often than not, we take the left kidney, because the vein there is longer and easier to implant. Then we carefully poke a needle in the left lower quadrant, lateral to the belly button (but a little lower), feeling a few pops as the needle gently enters the abdomen. We then insufflate CO2 and blow up the belly with gas. This allows us to have some space to see.
At this point, we insert our first working port, with a camera inside it so we can monitor our progress as we slowly advance the port, watching the tissue planes, going through fascia and muscle, until we enter the abdomen safely. After this port is in, we put in our other working ports. We then insert long, thin instruments through the ports, again watching our efforts with the five-millimeter camera in the first port. Typically, the surgeon uses two instruments: in the left hand, a grasper or a suction; and in the right, a harmonic scalpel. This instrument with the cool-sounding name has two blades at the end that vibrate ridiculously fast (fifty-five thousand vibrations per second) when you press a button. We use this instrument to dissect (your fingers go in the handles like a pair of scissors), and to divide structures, including blood vessels; the vibrations seal small vessels.
In the first part of the operation, we mobilize the colon out of the way, to get to the kidney and ureter, which sit behind it. This part is usually easy. Then we mobilize the spleen and its attachments away from the kidney. You have to be very careful not to nick or injure the spleen—this organ is basically a bag of blood, and the smallest injury can bleed enough to require its removal. Once the kidney is exposed, you have to dissect out the blood vessels. Normally, there is one vein and one artery, but there can be variations on this. We always know the anatomy beforehand, from the patient’s CT scans, which delineate these structures for us. Sometimes kidneys can have two or three arteries and veins. Dissecting these vessels is both fun and mildly stressful. You advance slowly, spreading tissue by opening and closing your hand as you watch the tip of the instrument on the TV screen in front of you. It’s critical not to make a hole in one of the vessels, as the bleeding can be tricky to control and makes it hard to see anything with the camera. First, we dissect out the vein, and then the artery. Then we peel the adrenal gland off the kidney and divide the adrenal vein. Now we go to the back side of the kidney, and free it up from its attachments posteriorly. We then flip it over and make sure it is only attached to its vessels and the ureter.
Okay, now we are ready to make a small incision for the organ’s removal. We make a small cut below the patient’s pant line, maybe just three or four inches in length horizontally—the same incision used for C-sections. We then open the peritoneum and insert a metal tube that houses an expandable bag. Then we put our camera back in and get ready to remove the bean.
First, we make sure they are ready next door in the implantation room, with ice, and UW solution hanging to flush the kidney out. Then we insert a linear stapler through the belly button port. This stapler has big jaws, which you put around the ureter, artery, and vein separately. When you push its button, it fires a row of titanium staples—actually three rows on the “stay” side and three on the “go” side (“stay” side is the side that stays in the body, “go” side comes out with the kidney)—and cuts between them. After each fire, we remove the stapler and hand it back to the scrub tech, who reloads it and hands it back. Once all the vessels have been disconnected, we push the bag out of its metal tube into the belly—while we watch it on the camera—causing the bag to expand so we can scoop up the kidney like a goldfish. We pull the bag’s drawstring, closing it. Then we pull the bag with the fish—er, I mean kidney—out of the belly and hand it off to the recipient surgeon, who will cut off the staple lines, flush the blood out with cold UW solution, and get the kidney ready for implantation.
Still in the donor room, we will look for any bleeding, close up our ports, and get out of Dodge. Easy-peasy—sometimes. That’s the thing about surgery: some cases are easy; some aren’t. Some people are thin on the inside, some are filled with internal fat, making all the planes tricky. When I do a laparoscopy, I study the films carefully beforehand, developing a 3-D image of the patient’s anatomy in my head. As I dissect, watching on a TV screen in 2-D, I picture where everything is, what is behind what. If some structure doesn’t look right or isn’t where I expected it to be, or if I lose my mental picture and can’t predict what I am about to see, I slow down, take baby steps, millimeter by millimeter, until it makes sense to me again.
The vast majority of these cases go well, but there is always a chance of injury. We surgeons spend our lives learning how to get out of problems when we get into them. All of us can handle the easy cases, but it’s the expert surgeon who can make a hard case look easy, avoid problems others get into, and most important, get out of the problems that inevitably occur. Another mark of the expert surgeon is knowing when to call for help. Pride has no place in the operating room.
So those are the steps of the donor operation, a surgery I have performed hundreds of times. In addition, I have evaluated close to a thousand people interested in donating kidneys. In some ways these surgeries and evaluations have become almost commonplace to me, as they are reliably on my schedule every week. And yet every time I meet a potential donor or begin a donor operation, I find myself amazed by the altruism and bravery of all these heroes. I am not just awed that they are donating parts of their bodies; they are actually allowing themselves to become vulnerable patients, so their recipients don’t have to suffer alone. To me, one of the worst parts of being ill is how it separates you from your loved ones, leaving you isolated from everyone and everything that matters to you. When you are really sick, dying sick, you have to accept that you won’t get to watch your children grow up, get jobs, get married; that you won’t get to be the person you might have become. Sure, your friends and family may mourn you for a while, they may think about you from time to time, but life will march on. Living donation allows a loved one to take your hand and say, “Let’s do this together.” The risk the donor takes, however small, is an important part of the equation. It says, “I will be sick with you, and together, we will fight through this. I will take that same leap of faith you are taking, put my life in the hands of someone we don’t know, and the two of us will be stronger than one.”
Kidneys are not the only organs that can be transplanted from living donors; livers, or portions of livers, also can be transplanted this way. But there are some major differences between these two types of transplants, including the severity of illness of the recipients, the organ allocation system, and outcomes between living and deceased organs. When your kidneys fail, you go on dialysis and then (assuming you are referred for transplant) on the kidney transplant list, your place on the list determined primarily by how much time you’ve spent on it: the longer you wait, the closer you get to receiving a kidney. But that waiting list is for deceased-donor kidneys.
Living-donor kidneys are different, and better, for a few reasons. First, you don’t have to wait on a list for them. You bring your own donor and you get transplanted, maybe even before you have to go on dialysis. Second, living-donor kidneys last longer. The half-life for a living-donor kidney is fifteen years, and many do better than that. For a deceased donor, it’s about eight to ten yea
rs.
When your liver fails, there is really no dialysis. When a liver is working really badly, you get increasingly sick until you die. The only treatment is a liver transplant. Unlike kidneys, livers are given out based on how sick you are as determined by lab values, and that score has been shown to predict how close you are to death. As your score goes up, the higher up you go on the list. The hope is that a transplant takes place before you are too sick to survive. In general, living-donor livers—for these, half the donor’s liver is removed and placed in the recipient—perform roughly the same as deceased-donor livers in terms of survival, although the operation to plug in a living-donor liver is certainly more complex than that for a deceased donor (from whom you get the whole liver).
For donors, the story is a bit different. For liver donors, risk of death is somewhere between 1 in 200 and 1 in 600; the risk of complication may be as high as 30 percent; and the length of stay is about a week. As long as you avoid early problems, you should live a normal life. In the United States we do more than 5,000 living-donor kidney transplants per year, and something like 250 living-donor liver transplants.
Do I have the same wonderful feelings about living donation for liver as I do for kidney? As long as the donor knows what she is getting into, the answer is yes. But I do have some hesitation. Patients tend to have a very different assessment of risk from surgeons. I look at a death rate of between 1 in 200 and 1 in 600 as high. Potential living donors need to understand that they could die donating part of their liver. They could die donating a kidney as well, but it is less likely by a factor of 10.
For surgeons, a critical part of the conversation when getting the consent of a living donor is the concept of coercion. While the vast majority of donors really do want to donate, seeing a family member suffering, even at risk of dying, can create undue pressure. Imagine a doctor telling you that you could save your family member if you were willing to take a little risk, endure a little pain, accommodate a little disruption in your life. Imagine the pressure other family members might put on you to save your sister, your father, your son. This is why all programs in the United States require the presence of an independent coordinator, who meets with potential donors to explore donor motivation and conviction. Still, in the end, family dynamics always plays a role in these decisions.
How Death Becomes Life Page 27
