Chapter 9 - What Does the Potential Living Donor Need to Know?
Donors are heroes. There is no other way to put it. Donors save lives. They give life to kidney patients whose life is ebbing away. Donors give hope to the families and loved ones of those suffering from kidney failure. Donors are the cornerstones of kidney transplantation. Donors are simply beyond incredible!
In this chapter, we will initially begin with a discussion of the requirements for being a donor. A closer consideration of the topic “tissue matching” will follow. Finally, we will go into a very careful discussion of “informed consent,” that is, a full and detailed description of all the risks potentially inherent in kidney donation: short term, long term, and otherwise.
As we said in the outset, donors have truly magnanimous hearts. In my own personal situation as a kidney recipient, I still find it impossible to find appropriate words to describe the size of the heart that characterizes my donor. We salute all of you, even if you’re only just beginning to give this undertaking some thought. We all think we know the benefits of donating a kidney – that is, we save another person’s life. But consider this: recently an altruistic donor, in his own words, “…wanted to give a stranger a second shot at life.” When his paired donation chain finally ended, a total of sixty individuals were involved! Can any of us even fathom the magnitude and generosity that saves thirty lives and pours out joy upon sixty families?
Qualifying to Be a Living Donor
Transplant centers require that donors, first of all, be in impeccable health. Mild blood pressure elevation or mild blood sugar elevations can often be reasons for exclusion. Simply being overweight, for example, can be a reason for disqualification. Surprisingly, age is not necessarily a hindrance. While younger kidneys are always more durable than older kidneys, older kidneys are certainly better than no donor kidneys at all. The team at Johns Hopkins studied more than twenty donors over the age of seventy. They concluded, if you are over seventy and in good health, you are not too old to donate a kidney.
No carefully controlled multicenter studies have ever been conducted to determine precisely the best medical tests to use for determining donor eligibility. As a result, significant variability still remains among transplant centers when examining the specific criteria used to define an acceptable candidate. This is probably most often seen in the area of blood pressure elevation. For example, some centers will not allow any blood pressure elevation; an equal number will allow blood pressure elevations that are controlled by a single medication, while a minority will allow blood pressure elevations that are controlled by two medications. The basic message is this: the acceptance criteria for being a donor are very high. The only way you can know for sure is to find out. The first step is usually over a simple screening interview, either over the telephone or online, answering basic questions about your health history.
After passing their screening interview, donors are then evaluated by those tests normally recommended and appropriate for the donor’s age and gender. For example, in addition to routine history, a complete physical exam and routine blood tests, if your age and gender recommends you have mammograms, mammograms will be done (if that requirement hasn’t already been recently satisfied). If your age suggests colonoscopy is an appropriate screening procedure, colonoscopy will be required. At the same time, if you are younger than the age at which routine colonoscopy is normally recommended, colonoscopy will not necessarily be routinely required.
Beyond that evaluation, certain additional tests are required to aid in the transplant process. For example, tests will be done to assure that you actually have two kidneys (one in 750 of us is born with only a single kidney). The surgeons need to know your kidney’s size, how many blood vessels supply your kidneys, and where they are.
In addition to your physical evaluation, donors are also routinely evaluated from a psychological perspective. Transplant teams need to know for certain that an individual’s motive is a positive one – that is, they are not motivated by money, notoriety, or some other unrealistic expectation. Because there is no 100 percent guarantee that every kidney transplant will be successful, the team requires assurance that a prospective donor is aware of this fact and knows that while an immediate transplant failure is quite rare, it can still happen. Both the transplant team and the prospective donor must be prepared to deal with such an unusual outcome. Remember that UNOS requires that all prospective donors have their own donor advocate. The prospective donor’s evaluation is carried out independent of the recipient’s evaluation. Information is not shared between donor and recipient during the evaluation process in order that the prospective donor may be entirely free of external influences as they contemplate their decision.
Finally, your team will begin to inquire as your current level of informed consent. We will discuss informed consent in detail in a few pages, but for our purposes here, understand that the evaluation team is preparing you for a complete undertaking of the journey you are about to undertake.
When you consider the profound benefits of kidney donation and the complexity of fully understanding the potential risks involved, you will understand that the donor evaluation process is of necessity carried out with great care and diligence. There is no hurry-up to this evaluation. Personally, I believe some delay is actually built in to the donor evaluation process on purpose. This is for the protection of donors. Six months from volunteering to donation is probably a pretty typical figure. Knowing what you need to know and thinking about it carefully and thoroughly takes time. You should never be rushed.
The more correct terminology for our “matching” discussion is probably “donor tissue type characterization.” That’s because the donor’s tissue characterization happens first, and only then is a decision made as to whether or not there is compatibility between that donor and the intended recipient. As we have seen above, however, every donor is always a perfect match for someone, somewhere. The immediate question is whether the donor’s intended recipient is a match or whether a paired donation will be required in order to transplant that intended recipient.
Matching Donors and Recipients
As we implied earlier, tissue characterization (so-called “matching”) happens in three steps. First, blood type is determined. Table 1 showed us the compatibilities of our various blood types. This is your first step in your look at compatibility with a potential donor. If your blood types are compatible, your “matching” process proceeds to the second step. Even when a donor believes they know their blood type, blood type is always reconfirmed by the transplant center. Most often, after passing the screening interview by telephone or online application, the transplant site will either invite the prospective donor to the center for blood tests to determine the individual’s blood type, or, alternatively, the center will send the potential donor a mailing kit so their blood can be drawn locally and then shipped to the transplant site for final determination.
The second step in tissue characterization of the donor is called HLA determination. HLA stands for human leukocyte antigen, a modestly complicated immunologic phenomenon that, fortunately, no donor or recipient needs to fully understand. The simplified version of HLA testing goes like this: each of us has six HLA antigens. The more donor antigens that match the recipient’s antigens, the better is the match. For example, six out of six antigen matches occur in identical twins. Most siblings are (statistically) most likely to have three of six matching antigens. But here is the important thing to remember: while it is true that the greater number of HLA matches, the better the long-term survival results, the differences between one or two antigens is not substantially different from matching four or five antigens. The point is that HLA matching needs to be kept in perspective. The more HLA matches there are, the better, but “better” is a relatively small percentage. Remember, a 6/6 match from a deceased-donor kidney is still not as good – in terms of graft survival – as a 0/6 match from a living donor.
Living Donor Graft Survival Rate at Ten Years and the Number of HLA Antigens That Matched
|10 yr survival||54%||56%||59%||57%||59%||62%||73%|
The final step in tissue typing and cross matching is a laboratory test in which the donor’s blood is mixed directly with the recipient’s blood to be sure that antibodies from the recipient don’t attack the tissue of the donor. This test measures the tissue compatibility of the specific donor and specific recipient and absolutely must be passed in order to proceed with the transplant.
So for the moment we will assume that either compatibility testing is underway or that it has been successfully completed. What else does the prospective donor need to know? We will divide this discussion into short-term risks, long-term risks, and miscellaneous risks. Remember that UNOS requires that your transplant center appoint an “independent donor advocate” to advocate for your needs, rights, and interests in the process. This is to protect you as a potential donor from any real or perceived coercion. It also guarantees that you as a potential donor consider your own situation independent of the pressures involving the potential recipient. Your advocate will also be heavily involved in teaching you the necessary information to ensure your consent is informed.
To understand potential short-term risk, the prospective donor must consider two events related to your surgical procedure: first, general anesthesia and second, the surgical incisions.
Informed Consent and the Potential Risks of Living Donation
Speaking in broad terms, it can be stated that on the whole, living donation is safe with few perioperative deaths, complications, or long-term medical issues. Several truisms are commonly stated about the risks. For example, the risk of dying during kidney donation (0.03%, or 3 in 10,000) is equivalent to sky diving twice, or driving 20,000 miles, or driving 40 miles to work for a year. It is important, however, for us to go well beyond these generalities and look at the specifics.
Kidney donation surgery is carried out under general anesthesia. General anesthesia is administered under the supervision of an anesthesiologist. General anesthesia is a routine part of virtually every surgical procedure done every day in every hospital in every part of the world. However, it is not perfectly safe. General anesthesia does not come with a 100 percent guarantee. There are always risks, no matter how rare. This is a topic certainly worthy of quality discussion with your anesthesia team.
Another aspect of kidney donation is the surgical incisions themselves. Remember that today the vast majority of kidney donations are carried out laparoscopically. We earlier described the laparoscopic method of kidney removal as one of the three major medical advances in kidney transplantation. Not every transplant center, however, is routinely doing laparoscopic removal. Be sure you are aware of the method your transplant center is using. Your postoperative course is significantly longer and more arduous if the older surgical approach is used. Of course, regardless of surgical method, all surgeries create incisions, and all incisions are at risk for postoperative infections. There are also several other less common complications that can occur. Again, they are worthy of quality discussion with your surgical team.
The usual kidney donor is admitted to the hospital the day of the planned procedure. When operated laparoscopically, the donor is usually ambulating with assistance by the end of the day. You will stay in hospital for observation to assure your vital signs are stable, you are taking fluids and foods by mouth satisfactorily, and that your incisional pain is satisfactorily controlled with oral analgesics. Most institutions prefer you stay a day and a half or two after surgery before you can be discharged. This is a very cautious and prudent approach, but you deserve it. You’re the hero, and absolutely no one wants you exposed to any unnecessary risk.
Post-Operative Pain and Discomfort
Probably the biggest post-operative annoyance for kidney donors is “gas” in their abdomen after surgery. In order to have sufficient room to “see” laparoscopically inside the abdominal cavity, it is routing that during the laparoscopic procedure, carbon dioxide gas is delivered into the abdominal cavity. Carbon dioxide is the gas you breathe out when you exhale. It is the gas that puts the fizz in your soda. If you were to view your abdomen from the outside during surgery, your abdomen would look distended as if you had “a lot of gas.” In reality, however, the gas is not inside of your stomach or in your intestines but outside of your intestines but still inside the abdominal cavity. After the carbon dioxide gas has served its purpose of improving the surgeons’ ability to see their operative field, it remains behind when the surgery is completed. Eventually it will be completely absorbed by the body. In the meanwhile, however, the body’s slow process of absorbing that gas is rather slow, meaning it may well still be present five to seven days hence. The gas can annoy other organs in the abdomen and result in discomfort in the shoulders, back, or abdomen overall. In my experience, the most common post-operative complaint from donors results from this collection of gas and the discomfort it produces. Most donors refer to it not so much as pain but as annoying, a nuisance, or a need to burp or throw up. Expect it. It likely is the most annoying part of your whole journey.
Long-Term Side Effects of Living Kidney Donation
The question about the long-term safety of kidney donation is also relevant for donors. For many years, medicine simply assumed donating a kidney was not harmful in the long run. Most of that assumption came from physicians’ anecdotal experiences with their kidney donors. The belief was further buttressed by the fact that 1 in 750 of us are born with only a single kidney and generally don’t appear to have any long-term effects from it. However, no one really knew because there was no significant large data set about donors that carefully studied donor’ long-term outcomes. Fortunately, larger data sets now exist, and significant portions of the question have now been answered. The larger data set was gathered by the University of Minnesota and suggested the following: for donors, no long-term increase in the risk of cardiovascular or cerebrovascular disease, and no shortening of life expectancy. (In fact, in the large Minnesota study, donors appeared to outlive non-donors by approximately two years, but that’s an observation suited for multiple statistical arguments and a good one for you to discuss with your statistician friends; http://www.nejm.org/doi/full/10.1056/NEJMoa0804883.)
It is my belief that the determination of long-term health outcomes for donors is one of the three great developments in kidney transplantation of our era. The reason is because we as physicians no longer have to offer “best guesses” of reassurance but instead can now look at a significant scientific database and draw these conclusions. There is one important caveat about this data, however: the Minnesota data largely reflects the Minnesota population where Scandinavians and northern Europeans are heavily represented. The data, therefore, may not necessarily be directly applicable to other ethnic groups, black Americans, Hispanic Americans, Native Americans, for example. That data remains to be gathered and analyzed. How can you help? Insist on being followed up long-term by your transplant center. “Long term” means for the rest of your life. Even if you move to another location, lab tests can easily be performed in one city and analyzed in another. Our profession did not do a very good job of long-term follow-up of donors in the early years of kidney transplantation. In fact, despite the fact that our living donors are the very cornerstone of kidney transplantation, it was not until 2000, almost fifty years after the first living donor kidney transplant, that UNOS required centers to report at least one year of follow-up data on donors to OPTN. As professionals, we ought to be embarrassed by that. We are, and we are all committed to doing it better in the future. Your insistence provides both support and encouragement to get it right.
Returning To Work after Kidney Donation
A final post-operative issue is your return-to-work date. Again, this is highly variable and depends on your age, your pre-operative physical fitness, your occupational requirements (desk work or manual labor, for example), and the rapidity with which your intra-abdominal carbon dioxide is absorbed. Your surgical center will give you their recommendations. They will always be conservative. You will likely surpass all their predictions. But hey, what is the hurry? You’ve just done a very heroic thing. Now you deserve everyone’s best care in order to guarantee you the very best possible outcome. Remember that many states have now enacted legislation that requires employers to allow employees to take time off for organ donation. Some of these statutes forbid employers from subtracting this time from accrued vacation and even guarantee that your job is waiting for you upon your return. California’s law, for example, requires companies with more than fifteen employees to grant up to thirty days of paid, work-protected leave for kidney donation. Even better, some institutions (e.g., Mayo Clinic) actually encourage organ donation by granting additional time off to their employees who donate. If you are working, get in front of your Human Resources representative and get your options defined for you.
Potential Social Implications of Living Kidney Donation
Finally, in addition to the possibility of short-term and long-term complications from donation surgery, there are potential social implications for you to consider. First, there are instances of perfectly healthy donors who have been denied medical insurance after their successful donation. This is not routine, but there are instances where insurance companies have declared kidney donors as having a “pre-existing condition.” Given the information about long-term donor outcomes that we’ve just discussed, this blanket insurance decision is certainly nonsensical. Unfortunately, it has been the occasional reality. Other insurance companies reasonably require the successful completion of blood tests that verify the health of the individual who has donated. Recently the passed federal legislation suggests the concept of “pre-existing condition” may go away, but unfortunately that same legislation doesn’t prohibit a significant increase in the premiums for these “pre-existing condition” people.
Consider also what might happen if an unexpected condition is found during the donor’s screening evaluation. It could potentially result in a “pre-existing condition” and uninsurability for the donor. These are obviously worst possible scenarios for donors, but every donor is entitled to be aware of the possibility. So just be aware. These are mostly minor problems but are certainly not minor for the individuals to whom they happen.
Medical Costs for the Living Kidney Donor
The second potential social implication for donors is the potential for incidental medical costs. The routine situation is that the donor’s medical expenses are covered by the recipient’s health insurance policy, even when the latter is Medicare. However, events such as travel to and from the transplant center, lodging during the donor evaluation process, and lost wages from missed work are not covered. Sometimes recipients will have the means and the largesse to cover these costs for the donor, but technically, the donor is responsible. Just be aware.
Finally, a handful of personal stories from donors can be found in the bibliography at the end of this book. They are worth a few minutes of your time.
You as a donor are about to embark on what is potentially the most noble and generous life-saving activity of your lifetime. You are the very cornerstone of kidney transplantation. Remember that at the same time, however, from the other side of the coin your kidney surgery can also be viewed sternly but legitimately as the only surgical operation that provides absolutely no physical benefit to the person undergoing the surgery. The result is that risk-benefit considerations and donor safety are a serious obligation for all of us, not just those of us who are hoping to donate to save a life, but also for the physicians, surgeons, and nurses charged with taking care of us. Get yourself educated!
What Does the Potential Living Donor Need to Know? Take-Home Messages
- Donors are heroes, period.
- Donors must be in very good health.
- The health evaluation for prospective donors is excellent and thorough.
- Every transplant center provides prospective donors with his or her own personal advocate for their donor journey.
- The compatibility between recipient and prospective donor continues from the original ABO blood type determination, now to HLA antigen testing and finally to the search for recipient antibodies hostile to the prospective donor’s kidney.
- Informed consent is critically important for every prospective donor.
- Informed consent covers many elements, including short-term, intermediate-term, and long-term risks as well as potential social and financial implications.
Chapter 7 - How Will I Ever Find A Donor?
Chapter 8 - Paired Donations and National Registries: Should I Be Personally Involved?
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