If you need a donor organ, you are probably coping with a lot of emotions. This article will help you understand what to expect.
Organ transplantation -- the surgical removal of a healthy organ from one person and its transplantation into another person whose organ has failed or was injured -- is often lifesaving and gives the recipient a wonderful new lease on life.
But organ transplantation is also a major surgery that carries potential risks and drawbacks, such as the chance of organ rejection. That's precisely why you and your loved ones need to gather as much information as possible on organ transplants, as soon as possible.
Organ Transplants: An Overview
In the United States, 9 types of organ transplants are now performed, according to the United Network for Organ Sharing (UNOS), a nonprofit organization in Richmond Va. UNOS administers the country's only Organ Procurement and Transplantation Network, which includes the organ transplant waiting list.
Organ transplants include kidney, pancreas, liver, heart, lung, and intestine. Vascularized composite allografts (VCAs), are now also possible, including face and hand transplantation. Sometimes, "double" transplants are done, such as kidney/pancreas or heart/lung.
In 2018, more than 36,500 organ transplants were performed in the U.S., according to UNOS. Most recipients are between the ages of 50 and 64. To date, most donor organs have come from deceased donors, but the percentage of living donors has climbed each year since 1988.
Depending on the organ needed, organs are matched using several characteristics, including blood type and size of the organ needed. Also taken into account is how long someone has been on the waiting list, how sick they are, and the distance between the donor and the potential recipient.
You Need an Organ Transplant: What's Next?
Once your doctor gives you the news, they will typically refer you to an organ transplant center.
You aren't bound to go to the recommended center, says Gigi Spicer, RN, vice president of transplant services for Tulane Health System in New Orleans. This is the point at which you as a potential transplant recipient have to become very proactive, even if you're still reeling from the news.
It's a mistake to give up and let your health care team make all the decisions, Spicer says. There are some things you can't control, but a surprising amount you can.
Start by searching for transplant centers by organ type, and then by state or by region, on the UNOS web page. Click on "Resources" and then "Member Directory."
You can get specific reports on centers nationwide by visiting the Scientific Registry of Transplant Recipients website. Included in the reports are waiting times, number of living vs. deceased donors, survival rates, and other facts.
The statistics can get complicated, so you should ask your own doctor or the facility to help you interpret them.
It is important, says Spicer, to educate yourself about your disease as much as you can and gather as much information as possible on organ transplants, so that you are an informed patient.
Getting on the Organ Transplant Waiting List
To get on the national transplant waiting list, UNOS tells potential recipients, contact the transplant hospital you and your doctor have decided on and ask for an appointment. You will be evaluated by the organ transplant team, which will take into account your medical history, current health status, and other variables to see if you are indeed a good candidate for the transplant.
Every transplant hospital has its own criteria for evaluation. UNOS has also developed guidelines. If the team accepts you as a candidate, it will add you to the national waiting list maintained by UNOS.
To find out if you are on the list, check with your transplant hospital. Written notices about who is on the waiting list are not sent by UNOS. According to UNOS, you may ask to be listed at more than one hospital, but be aware that individual hospitals can have their rules about that; be sure to ask.
UNOS keeps a running total of the transplant waiting lists in the entire nation, organ by organ, on its website and updates it regularly. As of September 2019, about 113,000 people were on the waiting list nationwide for organs of all types.
Organ Transplant Waiting Times, Policies, Procedures
The average wait time for an organ transplant varies by organ, age, blood type, and other factors. For instance, waiting times can reach seven to 10 years for candidates waiting for deceased kidney organ donors.
UNOS has an online database known as UNET, which collects, stores, and analyzes data on the patient waiting list, organ matching, and the transplants. All U.S. organ transplant programs, as well as organ procurement organizations and tissue typing labs, work together to share the organs. The database allows the facilities to register patients, match donated organs to patients on the transplant waiting list, and manage the data of transplant patients before and after the surgery.
More than 200 transplant hospitals operate in the U.S.
New federal rules that tightened standards for the centers took effect in June 2007. Among other requirements, the centers are now required to perform an average of 10 transplants a year, with some exceptions allowed, to keep federal funding.
UNOS distributes the organs first locally. But if no match is found, the organ is offered to a good match regionally and then nationally, if necessary.
What Are Your Organ Donor Options?
You also may have a choice about whether the organ donor is deceased or living.
Living donors are arranged through the individual transplant centers, according to UNOS. Another option, if you need a kidney transplant, is to contact the National Kidney Foundation's National Donor Family Council.
Your living organ donor can be a spouse or other family member or an unrelated person such as a friend, Spicer says. The potential living donor's blood is tested to see if they are compatible with the recipient.
But even if the blood types are not compatible, you may be able to find a program that allows proxy donors. This is when someone who doesn't match the intended donor can still donate the organ for someone else's use, and the intended donor goes to the top of the transplant list.
Another possibility is called paired kidney exchange in which recipients who have donors that are not compatible can enter programs where they are able to "swap" donors.
Those who need a transplant often ask if they can buy an organ. The answer is simple: No. In the United States, it is a felony to buy an organ.
Though other countries allow the sale of organs, a doctor practicing in the U.S. would not place that organ, Spicer says.
Gathering Information on Organ Transplants
Depending on the organ being transplanted, you can get other help from a variety of organizations. UNOS has on its site an exhaustive list, from national organizations such as the American Heart Association, America Kidney Foundation and American Liver Foundation to state organizations such as the Georgia Transplant Foundation.
There's a wide array of information on organ transplants available to you. You can be an integral part of your care by tapping into these resources.