Chapter 7 - How Will I Ever Find A Donor?
Remember that at the very outset of this book I told you that now is an unprecedented and ideal moment in time to be considering kidney transplantation. Three major medical advances have all converged in recent years to result in this marvelous opportunity. To refresh, the first was the introduction of laparoscopic kidney removal from living donors. The second major advance is the improved understanding of the long-term natural history of living kidney donors. Here is the third one: highly sophisticated computer software that allows for a far more ideal system of matching donors and recipients. We will describe this advancement shortly under the heading of “paired donation.”
Our approach to this topic will involve two primary areas of emphasis. The first item of importance will deal with the tactical aspects of discussing your need for a kidney donor with your family and friends. We will then move to the topic of national, computer-matched registries or so-called “paired donation.” The latter phenomenon is making a rapid and substantial contribution toward facilitating matching and decreasing matching times, all by providing kidney patients with wider access to potential living donors. Your search for a donor will begin with your small circle of family and friends but then often widens into a larger and more populous world of potential donors in the national registries. This is why we will start with a discussion of your initial conversation with family and friends, and then move toward a discussion of the national registries and their potential value in your search.
Communicating Your Need for a Kidney Donor with Others
Over the years I bet you have asked the people closest to you to help out with all sorts of things – a ride home, a sandwich, a glass of ice water, a golf tee, even a few dollars. But a kidney? No way. A kidney seems to most of us to be way beyond the pale.
But here’s the incredible secret. You are going to be surprised to learn how many people there are in this world and in your own circle of family and friends who are filled with an unbelievable generosity and goodness of spirit. Their generosity is so profound that they will consider your plight without you even asking them. I bet you are living among heroes and didn’t even know it. All they need from you is to know about your need. You won’t need to beg. You won’t need to sell. You simply need to communicate. Without knowing your situation, your friends can never seriously consider their ability to meet your need. That means your task is to inform them. Informing is still a complex task, but it is less formidable than “asking” for a kidney. It is key to remember this because it is so much easier to get a task done when we are focused on the right task, not the wrong one. Remember, this is all about informing people. It is not asking them.
Another excellent learning resource comes from Harvey Mysel, a Chicago businessman and kidney recipient. Mysel has developed a website at www.LKDN.org, a site that is an excellent resource for learning the approach to discussing our need for a kidney when we talk with others. Mysel advocates the “elevator speech,” meaning a brief response to the question, “Hello, how are you?” that could be given in the time it takes the elevator to leave the first floor and arrive at the top floor. In essence, it enables the patient to welcome the questioner’s greeting and then acknowledge that there is a current struggle with kidney disease going on and that it is going to require a kidney transplant. That is the essence of an effective initial conversation. The seed of need has been planted. If the seed germinates at all, additional information can be given in a subsequent conversation. See also http://www.livenow.info/GetLiving/IntimacyRelationships/TellingOthersAboutYourChronicKidneyDisease.html for additional information as well as the unique idea of having business cards made to help tell your story.
Transplant center coordinators are also often invaluable resources for these subsequent conversations. Indeed, UNOS directs that a potential donor be given their own personal advocate within the transplant center, thus providing an excellent opportunity for continued education as well as the protection of the well-being of the potential donor.
Indeed, in the current era of social media, even resources such as Facebook, Craigslist, Twitter, and YouTube have resulted in people responding to an individual’s succinctly stated needs. A recent study of Facebook posts seeking kidney donation found ninety-one ads from patients ranging in age from two to ninety-one years, 12 percent of whom were transplanted and another 30 percent of whom reported potential donors had stepped forward to be tested. The review was appropriately critical of the fact that only 5 percent of the posts mentioned risks, and only 11 percent mentioned the possibility of associated costs for the donor. Moral of the story: If you choose to go the social media route, it works, but in the course of your social media conversations, it would be well to make mention of the issues of side effects and potential costs (chapter 9) as well.
Finally, rest assured that everyone recognizes this is a difficult task to learn. Know that your chosen transplant center will also provide individuals and resources to assist you in this process, often providing educational materials and volunteering to sit with families and potential donors in conversation about living donation.
Just who might be appropriate for initial conversation is fairly straightforward; family members, especially siblings, come immediately to mind. Close friends, spouse, close coworkers, confidantes, and mentors all come to mind. Prior to the widespread use of “paired donation” and national registries, tissue compatibility was a paramount issue in considering potential donors. We will discuss the mechanics of compatibility testing of donors in chapter 9. We will touch on the subject of compatibility testing in this chapter for recipients as well as again in the chapter for donors (chapter 9). It involves both of you, so we will do it twice, each time in small bites, so that you both understand. Before doing that, however, it is necessary to understand the revolution occurring with paired donation and national kidney donor registries.
The Initial Step in Screening for a Potential Donor
Recall that the first living kidney transplant in history was done between identical twins. Since most of us do not have the (good?) fortune of having an identical twin, tissues compatibility between donor and recipient becomes highly relevant. The mechanics of tissue compatibility can be considered in three steps. The very first step is blood typing. Donors and recipients must have compatible blood types. A table of blood type compatibilities is shown here:
ABO Blood Type Compatibilities
|You||Donor is O||Donor is A||Donor is B||Donor is AB|
You can see that an O donor is compatible with another O, an A, a B, or an AB recipient. At the same time, see that an O recipient can only receive from an O donor. This is the reason O blood types are sometimes referred to as “universal donors” (ignoring Rh factor considerations for the time being). On the other hand, note than an AB recipient can receive from any type of donor, whereas an AB donor may only donate to an AB recipient. This results in the description of AB blood types as “universal recipients” (again, ignoring Rh factor considerations). The biology behind blood-type matching and incompatibility is fairly simple, and if you are interested pursue the topic at www.khanacademy.org. For the time being, however, and for the sake of simplicity, just use the table. Note that Rh positivity or negativity is irrelevant to our transplant compatibility conversation. That means that an O blood type is considered as an O, whether it’s O positive or O negative. For the sake of thoroughness note also that in rare circumstances blood-type compatibility is not an absolute necessity. These circumstances, however, are quite rare, and the complexity of these cases is beyond the scope of this manual.
So that you might better appreciate the uniqueness of your own personal blood type, the relative percentage of people with various blood types is as follows.
Remember that we initially established that there are three steps in the tissue compatibility testing, the initial step being blood typing. The next two steps are human leukocyte antigen (HLA) testing and, finally, cross matching. These latter two steps are deferred to chapter 9. Here we want to stay on the topic of blood-type compatibility to drive home the fundamental concepts behind “paired donation.”
Paired Donation, Local, and National Registries
Let us imagine for a moment that Pair #1’s husband needs a kidney transplant and is blood type A. Further imagine that Pair #1’s wife wishes to be her husband’s donor, but she is blood type B. The ABO compatibility table shows you that this transplant would be incompatible and could not be undertaken. Blood type B cannot donate to blood type A.
Now imagine a second pair, Pair #2, where the husband needs a kidney transplant and is blood type B. Further imagine that Pair #2’s wife wishes to be her husband’s donor, but she is blood type A. The table again shows you that this transplant would be incompatible and could not be undertaken either. Blood type A cannot donate to blood type B.
Left to their own devices, neither of these husbands in need of a kidney transplant could be transplanted. But if the two couples were to be “paired” with each other, Wife #1 with her B blood type is a perfectly compatible donor for Husband #2 and his B blood type. At the same time, Wife #2 with her A blood type would be a perfectly compatible donor for Husband #1 and his A blood type. The result is that if both these transplants are performed at the same time – Wife #1 donating to Husband #2 and Wife #2 donating to Husband #1 – two patients who previously had no compatible donors now each have compatible donors and can be successfully transplanted. This is the fundamental principle behind paired donation – that is, the pool of recipients and donors is broadened enabling a greater mathematical probability that compatible living donor transplants can take place.
It then follow that if more matches can be made by considering two couples at a time, would there not be reason to believe that more individuals there are in the pool, the more likely it would be to find matches in an expanded pool? The answer is yes, this is indeed the case. When the pool gets larger, the mathematics behind determining the best matches becomes increasingly complex, ultimately requiring sophisticated computer software to do the calculations. Nevertheless, the outcome is intuitively obvious – more matches, lessened waiting time, and greater efficiency dealing with extremely difficult matches. To date, the longest chain of “paired donation” consisted of sixty patients, thirty donors and thirty recipients. In the next chapter we will review some data to demonstrate that what had been theoretically obvious is now a reality. The advent of computer software sufficient to perform these incredibly complex mathematical calculations is a major advance in donor-recipient matching and is truly one of the great breakthroughs in kidney transplantation in this decade.
The fundamental lesson from this chapter is that computerized matching systems have greatly facilitated matching. Entry into living donor programs generally requires that each of us have our own living donor identified. If every volunteer donor were a perfect match for his or her intended recipient, we never would have needed computerized matching. That is just not always the case, however. Sometimes the donor is incompatible or perhaps just poorly compatible. In that case, while we know the donor is perfectly compatible with someone else somewhere else, the question becomes how to identify that ideal recipient. Even more important, the question is how to link that recipient’s potential donor to our own need and, in exchange, enable someone else to have access to a donor ideal for our own situation. But how do we find those connections? How do we make that match? There are nonprofit programs that will do this for us and, in fact, are doing it for people every day. Each of us needs to consider the following: are we going to rely simply on our own resources for finding a donor, or are we going to expand our access to the pool of potential living donors by seeking potential assistance from a registry? Key to making this decision is realizing that there are multiple programs being used by multiple transplant institutions. They come in all sizes from large to very small, from those with a track record to those just having started, and with different amounts of published data on both short- and long-term success. Not every matching program is available in every transplant center. Some programs (for example, the Mayo Clinic) have their own intramural paired donation program, offering the advantage of common protocols and practices and finances. For this reason, investigate what registries the centers you are considering are currently using. Start the process of making your decision now! First, do I want to consider using a matching program if I cannot find a compatible donor? Second, which matching program would I hope to access? Finally, does my preferred transplant center offer access to that particular program, and, if not, which one(s) do they use or have they created their own?
How Will I Ever Find a Donor? Take-Home Messages
- Learning to inform your family and friends of your current battle is an important skill.
- Abundant resources exist to aid you in learning this skill.
- It’s about informing, not asking.
- Determining your ABO compatibility with potential donors is a first step in the matching process.
- Paired Donation allows incompatible donors to save another’s life and, in return, have their donor save yours.
Chapter 8 - Paired Donations and National Registries: Should I Be Personally Involved?
Chapter 9 - What Does the Potential Living Donor Need to Know?
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