I have lived with kidney disease since the age of two, I have had 40+ surgeries and 13 years of dialysis, and I am now living with my fourth kidney transplant. Despite the fact that I received two kidneys that never worked, my choice has always been transplantation, even though one of those kidneys left me very sick in the hospital for months; it took me nearly a year to recover. My third one lasted for 20 years, and my fourth is the best one yet: my serum creatinine is .7, and my blood pressure is normal three years later.
Transplantation is the optimal treatment for people with kidney failure. Over 600,000 people are on dialysis, and about 100,000 people are on the waiting list for a kidney transplant. However, only 75,000 of the 100,000 are active. The other 25,000 are inactive due to health issues. The idea and reality of a kidney transplant and the opportunity to no longer rely on a machine to live provides hope. People need to know all of their options and avenues so they can advocate for transplantation, which leads to a better quality of life and a longer life expectancy, if they choose.
There were 16,895 transplants performed in 2013 (11,163 from deceased donors and 5,732 from living donors). California had 2,085 transplant recipients, and New Hampshire had 32. Depending on the state where you live and the blood type you have, waiting time can vary from a couple of years to a decade.
Unfortunately, organ donation has remained relatively flat over the few years. Living donation has decreased and deceased donors have slightly increased due to taking Extended Criteria Donor (ECD) kidneys. Another reason for this stagnation has been that transplant centers have been under tremendous pressure to meet outcome measures that are based on the performance of the top centers and not always on a validation of similar patient and donor populations. More important, none of the standards used by insurance companies or the United Network for Organ Sharing (UNOS) are based on a comparison of the relative risk of morbidity and mortality from not getting a transplant versus transplanting a less than ideal, but still viable, organ. With UNOS and insurer 1-year graft survival goals/expectation in the 90%+ range, surgeons are reluctant to accept an organ that might yield a 75% to 80% risk, even though that would be a far more preferable outcome for the patient than continuing on dialysis.
If kidney disease is detected early—at a glomerular filtration rate of 20—a transplant can eliminate the need for dialysis altogether. However, the patient must first be evaluated by a transplant team and approved for the list.
People who have been approved can be listed at more than one transplant center (multi-listing). Being multi-listed in different regions can increase the chances of getting a transplant. However, transplant centers have the option of not accepting multi-listed patients. Further, recipients could be required to pay out of pocket for their hospital stay and travel expenses and must also have a speedy way to get to the center if an organ from a deceased donor becomes available. In some circumstances, I have heard of insurance companies paying for travel costs to help people with high antibodies go to a transplant center that has a desensitization program. Insurance companies know that it is more cost-effective to transplant than to keep a patient on dialysis.
Sometimes, extended criteria kidneys will be offered. This means that the deceased donor had medical complexities in the form of age (over 60), high blood pressure, or an elevated serum creatinine, to name a few. The transplant coordinator will disclose all of the donor’s issues, and the patient must make a decision quickly to accept or refuse that kidney. In 2015, the United Network for Organ Sharing (UNOS) will implement a new deceased donor allocation system to help increase the number of years of a working graft. To simplify, one of the goals is a younger kidney will have a higher probability of being transplanted in a person who life expectancy matches the age of the donor.
Transplant centers have different criteria for the age of the living donors they will accept, and a person does not have be in perfect health. A person who offers to donate a kidney has to undergo many tests to ensure that they are healthy enough and have two well-functioning kidneys. Several studies have shown that a person who donates a kidney has the same life expectancy as a person who has two kidneys. The few living donors who later developed end-stage renal disease were moved to the top of the UNOS waiting list because they were donors. Many stories are circulating on social media about people who tried to donate only to have the transplant team discover serious health issues that had gone undetected and could have had dire consequences.
In many cases, an anonymous person has come forward to donate a kidney to a complete stranger. This is called altruistic donation. Most often, this Good Samaritan heard about the patient in need and felt compelled to donate.
A recipient and a donor whose blood or tissue types are incompatible can be paired with another donor and recipient in the same situation. This is called paired donation. Increased media attention is being paid to kidney chains, where more than two donors and two recipients are involved. How do they work? Each recipient will benefit from a transplant that he or she would not otherwise have gotten. On February 20, 2012, ABC Eyewitness News Los Angeles shared a story stating that “doctors are calling it the world’s largest kidney transplant chain. It involved 30 donors and 30 recipients from all across the United States. And it all started with one Good Samaritan in Southern California. Doctors working on this case call it an example of ‘paying it forward’ with organs. Donating your kidney is one of the greatest gifts you can give. Riverside resident Rick Ruzzamenti donated his to a complete stranger, more or less on a whim after hearing [that] the clerk at his yoga studio had donated. In the process, he started something truly unprecedented. Ruzzamenti’s kidney went to a recipient in New Jersey. From there, another donor sent a kidney to Wisconsin, and on and on, reaching 30 recipients in 11 states.” The University of Alabama at Birmingham Hospital reported in July that it had the nation’s longest, ongoing single-center paired kidney transplant chain. Twenty-one living donors “have changed the lives of 21 recipients so far” UAB reports, and six more transplants were scheduled for the week of July 7.
Patients who have a high panel reactive antibody level might repeatedly reach the top of the list but always fall short of getting a kidney because of a positive cross-match. People who have had previous transplants or multiple blood transfusions or have been pregnant can fall into this category. In the past decade, great strides have been made in this area through the use of desensitization protocols that have led to excellent outcomes. The protocol can be a combination of intravenous immunoglobulin (referred to as IVIG), Rituxan, and plasmapheresis.
Since I had an extremely high antibody count, I needed all three to prepare my body to accept my fourth transplant—my step-sister’s Cyndi’s kidney, which I now lovingly refer to as LuLoo. Cyndi’s middle name is Louise, and, well, I have to go to the loo a lot. I suggest that patients ask the center suggesting such a protocol whether it has a program and how many patients have gone through it successfully.
A patient who has a potential living donor with an incompatible blood type therefore now has two options: undergoing the desensitization protocol or going through a paired donation program as described earlier.
One of the major obstacles facing people who want to get a transplant is how to pay for their medications after three years. Unless they are over 65 or have another disability diagnosis, Medicare covers people with end-stage renal disease for only three years. There is support in Congress for lifetime coverage of the immunosuppressive drugs needed to maintain the transplant, but the legislation is still awaiting passage.
With the passage of health care reform, patients with a transplant can apply for insurance and not be discriminated against for a pre-existing condition; further, lifetime payment caps have been removed. This is good news for people with a chronic illness, and patients need to ask their transplant team how the law will help them after they pass the three-year mark.
Another obstacle patients have to overcome is determining who is going to be their care partner during their recovery. The center must feel confident that the patient can get to and from follow-up appointments and has a support system to help with shopping and cooking and to address any issues that might come up. Centers and teams do not want to perform a transplant and find out later that the patient lost the kidney because he or she could not get to follow-up appointments.
Why a patient might not be a candidate
Patients could believe that they are too old for a transplant. If the patient is healthy, it is up to the center to decide, since they many have different policies. Patients can be denied if they have had a recent bout with cancer (most centers require 5 years of remission), severe heart disease, untreated psychiatric issues, current alcohol or drug abuse, or lack of health insurance or the ability to obtain it. They can also be rejected for missing dialysis appointments or signing off the machine early. This signal to the transplant team that the patient is non-adherent, and therefore they may not take their immune suppressant medications needed to prevent rejection.
Advancements in kidney transplant surgery and improved antirejection medicines have given many patients the opportunity to pursue transplantation. I recently heard a well-known transplant surgeon say that although he knows how to perform this life-saving operation, the reality is that there are not enough organs. Hopefully, scientists will soon discover how to grow a kidney so that people will no longer need to wait.
Special thanks to transplant patient Harvey Wells in helping to prepare this article.
United Network for Organ Sharing (UNOS)
Kidney Transplant Centers
National Kidney Registry
National Foundation for Transplants