Hearing from your doctor that you need a transplant is overwhelming and difficult news. Also overwhelming can be your sudden need for information on organ transplants. This article will get you started on what you need to know.
Organ transplantation -- the surgical removal of a healthy organ from one person and then putting it 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 transplants are also major surgery and carry 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 on organ transplants as possible, and as soon as possible.
Organ Transplants: An Information Overview
In the United States, six types of organ transplants are now performed, according to the United Network for Organ Sharing (UNOS), a nonprofit organization in Richmond Va., which 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; sometimes "double" transplants are done, such as kidney/pancreas or heart/lung.
In 2005, there were 27,527 transplants done in the U.S., according to UNOS, a slight increase over the total for 2004, when there was 26,541. To date, most donor organs have come from the deceased rather than living donors. In 2005, for instance, 20,635 donors were deceased, while 6,892 were living.
Most common, typically, are kidney transplants; least common single-organ transplants are the intestines.
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 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, he or she will typically refer you to a transplant center.
You aren't bound to go to the recommended center, says Gigi Spicer, RN, director of the kidney transplant service for Henrico Doctors' Hospital in Richmond, Va. 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, by state or by region by going to the UNOS web page. Click on "Resources" and then "Member Directory."
You can get specific reports on centers nationwide by visiting the web page of the Scientific Registry of Transplant Recipients' U.S. Transplant web site, which is maintained by the University of Michigan's Ann Arbor Research Collaborative for Health. Included in the reports are waiting times, number of living vs. deceased donors, survival rates, and other facts.
The statistics can get complicated, so asking your own doctor or the facility to help you interpret is advised.
Another way to stay in the game, says Spicer, is to educate yourself about your disease as much as you can and gather as much information on organ transplants as possible.
Getting on the Organ Transplant Waiting List
Your natural first question is, how do I get on the transplant waiting list? To get on the national list, UNOS tells potential recipients to contact the transplant hospital you and your doctor have decided on and ask for an appointment. You will be evaluated by the 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 web site and updates it regularly. In March 2007, for instance, 95,563 were on the waiting list nationwide for organs of all types.
Organ Transplant Waiting Times, Policies, Procedures
The average wait time varies by organ, age, blood type, and other factors. For instance, waiting times can reach five or six 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.
Recently, new federal rules that tighten standards for the centers have been announced and take effect in June 2007. Among other requirements, the centers will be 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 she is 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. The concept is fairly new.
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 physician 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 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.
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