Why is it so important?
You probably know that organ donation is when someone receives an organ from another person because the recipient’s is no longer functioning correctly. In most cases, the donated organ from someone is deceased. However, there is such a thing as living organ donation. How is this different? What, if any, negative consequences are there? How is the process completed?
According to the US Organ Procurement and Transplantation Network, about 113,000 people in the America are waiting for an organ and the majority of those people, about 95,000, need kidneys. Every 12 minutes another person is added to the list and about 20 people who are on list die every day, which is over 6,500 people a year. Organ donation involves a surgical procedure to remove an organ or portion of an organ from one person and place it in another person whose organ is no longer functioning properly. In most cases, the donor has died and decided to donate their organs before they passed or a person’s family decides to donate a loved one’s organs after they’ve passed. However, there is another alternative…living organ donation. While some organs can’t be donated while the donor is still alive, some can because the human body is able to compensate without certain ones or parts of certain ones. Living donors can give one of their two kidneys, one of the two lobes of their liver, a lung or part of a lung, part of their pancreas or parts of their intestines. Living-donor kidney transplant is the most studied because it’s the most common since it’s been in existence for over 50 years with living-donor liver transplant being a close second with 30 years. Living donors can also donate certain tissues, like skin, bone, bone marrow, umbilical cord blood, amnion (after childbirth) and blood. The popularity of living organ donation has increased dramatically in recent years due to the growing need for organs for transplants and a shortage of available deceased-donor organs. Another benefit of living organ donation is that it’s been proven to have fewer complications than deceased-donor transplants and a longer survival of the donated organ. On average, around 6,000 living donations take place each year, which means about 4 out of every 10 donations are living organ donations. Last year, there were 7,300 living organ transplants.
Most living organ donations happen between family members or close friends, but can be between an unrelated person who has a need that the donor heard about. This is usually referred to as a directed donation because the donor selects the person they want to donate the organ to. Sometimes, your blood type might not be a match for the person that you would like to donate to, but you match someone else on the waiting list. If someone else on the waiting list has a friend or family member who isn’t a match to them but to the person that you’re trying to donate to, then you can trade donors. This allows each recipient gets an organ that is compatible with their blood type. When this happens, it’s called paired donation. Some medical centers will transplant an organ even if the donor’s and recipient’s blood and tissue types don’t match, but that means the recipient will need to receive special treatments to prevent their body from rejecting the donor organ. If a person doesn’t designate someone to receive their donated organ, it’s called a non-directed donation. Instead, the match is arranged based on medical compatibility to a patient in need. In these situations, some donors choose never to meet their recipient and some candidates choose not to meet their donor. Other times, the donor and recipient choose to meet, but it has to be permitted by the transplant center’s policy.
There are a couple of ways that a living donor’s kidney is removed for transplant. A laparoscopic nephrectomy is a minimally invasive procedure that involves less pain and a shorter recovery than the other type, which is the traditional open nephrectomy. In a laparoscopic nephrectomy, the surgeon will make two or three small incisions close to your bellybutton and use a special camera (laparoscope) to see your internal organs. This helps to guide the surgeon through the procedure. However, in open nephrectomy, a 5- to 7-inch incision is made on the side of your chest and upper abdomen in order to access your kidney. Either procedure lasts about two to three hours under general anesthesia and you’ll need to stay in the hospital for a few days after to recover. Most people are able to return to their normal daily activities in about four to six weeks. For women, it’s important to note that kidney donation normally doesn’t affect the ability to become pregnant or complete a safe pregnancy and childbirth, but it’s usually recommended that you wait at least six months after the donation before becoming pregnant. Another key consideration is that some doctors recommend kidney donors protect their remaining kidney by avoiding contact sports. For a living-liver donation, a portion (somewhere between 40-70% depending on the size of the recipient) of either lobe of your liver is removed through an incision in the abdomen. The procedure can last up to 10 hours, is done under general anesthesia and you’ll need to stay in the hospital about seven days. The good news is that your liver begins to regrow almost immediately after surgery and will reach normal size and volume again within about two months. Most people are able to return to work and other normal activities after two to three months. Unlike kidney donation, little is known about pregnancy after living-liver donation since it’s less common. After either procedure, you’ll need to return to the transplant center for follow-up care, tests and monitoring several times because transplant centers are required to submit follow-up data at six months, 12 months and 24 months.
Any potential living donor must be evaluated by the transplant center where they intend to make the donation to determine whether they are suitable to be a donor. Just as it is with deceased donors, a medical assessment will be done to determine if your organ can be donated because certain conditions, such as HIV, diabetes, cancer, high blood pressure, kidney disease, heart disease or severe infection, would exclude you from organ donation. The general rule of thumb is that you should be physically fit, in good health, between the ages of 18 and 60, and should not currently have, or had in the past, any of the aforementioned conditions. When you contact transplant center staff, they will begin a basic medical screening to find out this information. Part of this process is also to figure out if donating an organ would put your health at risk not only in the short term , but long term. Once the initial screening is complete, you’ll need to do a blood test to see if you are compatible with the intended transplant candidate. If you are not compatible with them, you might match with someone else. As part of the process, the transplant center is required to provide you with an independent donor advocate (IDA) or IDA team, whose job is to assist you as you navigate through the steps. It’s essential to note that these individuals shouldn’t be part of the potential transplant recipient’s medical team.
When you’re donating an organ, you’re exposed to the risk of and recovery from an unnecessary major surgery. The immediate, surgery-related risks are pain, infection, hernia, bleeding, blood clots, wound complications and death. Even with several ongoing studies, long-term follow-up information on living-organ donors is limited, but available data shows they typically fare very well. As of June 2006, United Network for Organ Sharing (UNOS) implemented a patient safety system that requires transplant centers to report medical problems experienced by living donors for two years after the donation surgery. These events are rare, but include death of the donor, loss of a function in a donor’s remaining kidney or other organ of which a portion was donated and any organ that could not be transplanted or isn’t used for original planned recipient. This is why the decision to be a living donor is very personal and where the informed consent process should help you understand all aspects of donation, including the risks and benefits for you. Part of the process, should include a discussion about alternative procedures or types of treatments that are available to the transplant candidate, including dialysis or transplant from a deceased donor. When evaluating the information in order to make a decision, some helpful things to consider are your/your religion’s feelings about organ donation, the risks for you related to your past/current/future health, do you have support network, how will the costs of procedure be covered and how you the procedure will affect you financially/ability to work. It’s also important to assess if you’re feeling pressured to donate, how will donating or not donating affect your relationship with the recipient, is there someone else who could donate (if so, how will the donor be chosen), your feelings about being rejected as donor if you’re an incompatible match and what happens if the recipient doesn’t do well after receiving your donation? All of these should play a significant role in your decision making. In addition to answering these questions, you should take an in depth look at the transplant center to make sure that it’ll be safe and meet your needs. They should be able to provide information about the data they have collected, such as the number of living donor surgeries they perform each year, the center’s organ donor/recipient survival rates, if they’re using the latest technology/techniques, the percentage of living donors who receive two years of required follow-up, the number of living donors who have had medical problems (including any incidents reported to the UNOS patient safety system) and any Medicare outcome requirements that the center has not met (like meeting expectations relating to number of transplants done and recipient and organ survival rates). The center should also describe other services they offer, like support groups, travel arrangements, local housing for your recovery period and referrals to other resources. The Scientific Registry of Transplant Recipients maintains a database that will allow you to compare transplant center statistics. One final thing to do before making a decision, that can be extremely helpful, is talking with other people who have been living donors. Remember, your consent to become a donor is completely voluntary and you should never feel pressured to become one.
If you’re donating your organ, your out-of-pocket costs shouldn’t be high. In many cases, the transplant program, recipient’s insurance or recipient covers your expenses from tests and hospital costs. On average, a living kidney donor faces disincentives costs equivalent to almost $38,000. Part of these costs include loss of wages during the surgery and recovery period. However, donors often encounter challenges in this area. Many donors are denied short-term disability insurance because it’s considered an elective procedure. An additional insurance related issues is that once a donor leaves the hospital after surgery, things can get complicated. For instance, a person traveled to another state to donate their kidney to a stranger. Everything went smoothly, but the person developed complications after they returned home. At this point, the recipient’s insurance company denied coverage because they were no longer at the transplant center, the transplant center wouldn’t accept responsibility and the donor’s insurance didn’t want to pay the follow-up care. In a different situation, the transplant center asked a donor to guarantee $40,000 of the surgery costs because of the limitations of the recipient’s insurance.
The National Living Donor Assistance Center is a federal program that currently exists to reimburse travel and lodging expenses of low-income organ donors. The only issues are that it benefits only 8% of living donors and its average grant is less than $2,000. For most donors, this might only cover half of what they have to spend. This past summer President Trump ordered the expansion of that program so it would cover a much broader set of patients and costs. The Health Resources and Services Administration (HRSA) was supposed to have guidelines for this by October of last year, but didn’t publish anything until December. These draft regulations cover only the bare minimum of donor expenses defined in the narrowest possible way. It doesn’t include anything for lost income (not just lost wages), all dependent care costs (not just out-of-pocket expenses), insurance against the risk of dying during the operation and protection against any long-term health consequences of donation. So, there’s no major change. According to The National Kidney Foundation, insurance companies are still denying or limiting life insurance, disability and long-term care insurance or raising premiums for living donors even though it’s already illegal under the Affordable Care Act. The Living Donor Protection Act would also provide protection against this and provide job protections for organ donors who need to take medical leave for organ donation and recovery after surgery. The federal government needs to follow the lead of the many states that have passed their own legislation to protect living donors in order to encourage living organ donation. One way to appeal to legislative members would be point out that kidney transplants dramatically reduce taxpayers’ costs for kidney failure. For example, Medicare spends $90,971 per patient per year on dialysis treatment, but only $34,870 per transplant patient per year. So, this means that living kidney donation is not just good public policy, but also smart fiscal policy.
Living organ donation can be a very rewarding experience. The key thing is to get as much information as you can before making a decision by asking a lot of questions throughout this screening process. It’s also vital to remember that if you change your mind, you’ve got the right to stop. If you would like more information about living donation please visit the UNOS website or call their toll-free number 1-888-894-6361.