Learning About Transplants

Getting on the waiting list

Receiving a donor organ can be a long process. You'll first get an evaluation by a medical team. If they determine you are a good candidate for a transplant, you will be put on an organ donor waiting list.

To get on the waiting list, you will need to:

• Get a referral from your doctor.
• Call the transplant center where you choose to have your transplant. To find a transplant center near you, ask your doctor. Or you can contact the United Network for Organ Sharing by going online at www.transplantliving.org or calling 1-888-894-6361.
• Schedule an appointment for an evaluation at the transplant center to find out if you're a good candidate for a transplant. Your transplant center can do all of the required tests. Or your doctor may be able to order some of the tests and send the results to the center.

During your evaluation, learn as much as you can about the transplant center. Find out if the center will accept your insurance, what your options are if you don't have insurance, and if support groups are available.

The transplant center will notify you to let you know if you have been placed on the waiting list. If you have questions about your list status, contact the transplant center where you were evaluated.

It may be days, months, or even years before you receive a new organ. And some people may never get an organ. When an organ is found, your transplant team will consider whether the donor is a good match for you, the status of your current health, and how long you've been on the waiting list. Your team will also consider the location of the donated organ. That's because it must be transplanted quickly to remain in working order.

Thinking about and waiting for a transplant can affect you emotionally. You may find it helpful to see a psychiatrist, a psychologist, or a licensed mental health counselor about your transplant.

Tests you'll need before your transplant

You will need some assessments before you have an organ transplant. The results will be used to match you with an organ donor. Assessments that are done for all organ transplant candidates include:

• A cross-match for transplant. This blood test shows whether your body will immediately reject the donor organ. It will mix a donor's blood with your blood to see if your antibodies attack the antigens of the donor.
• Antibody screen. A panel-reactive antibody (PRA) test measures whether you have antibodies against a broad range of people. If you do, it means that you're at higher risk of rejecting an organ, even if the cross-match shows that you and the donor are a good match.
• Blood type. This blood test shows which type of blood you have. Your blood type should be compatible with the organ donor's blood type. But sometimes it's possible to transplant an organ from a donor with a different blood type.
• HLA type. This blood test shows the genetic makeup of your body's cells. We inherit three different kinds of genetic markers from our mothers and three from our fathers. HLA type sometimes plays a role in matching an organ recipient to a donor.
• Mental health assessment. At these visits, an evaluator looks at your emotional health, your social support, and how donation might affect you. A living donor may also be required to have this assessment before donating an organ.

What to do if you're not a good candidate for a transplant

If you are told that you are not a good candidate for organ transplant, find out if there are other treatments for your condition. Many people can live for years with serious health conditions.

The goal of your care may shift to maintaining your comfort. Talk to your loved ones about the type of care you would like to receive. Discuss their expectations as well as your wishes, care needs, and finances and the needs of your family. Your choices may change as your illness changes.

How well transplants work

Organ transplant success depends on:

• Which organ is transplanted.
• How many organs are transplanted. For example, you could have a heart transplant or a heart and lung transplant.
• The disease that has caused your organ to fail.
• Whether you have unhealthy behaviors such as smoking.
• The age of the donor organ. In general, the younger the organ donor, the healthier the tissue. But recent research is challenging this thought. It may be that some older organs work just as well as younger organs.
• The length of time that the donor organ is out of the donor's body. The more quickly an organ is transplanted after it is removed from the donor, the more likely that the transplant will succeed.
• How well the organ was preserved just before transplantation. The donor organ must be properly preserved while it is being transferred, especially if it was transferred from a long distance.
• How well you take your medicines as prescribed.

Here are the chances of being alive 5 years after having an organ transplant. These numbers are averages. Your personal chances will depend on your health, the donor organ, and other things.

• Heart: About 8 out of 10 people
• Intestine: About 6 out of 10 people
• Kidney: About 9 out of 10 people
• Kidney and pancreas: About 9 out of 10 people
• Liver: About 8 out of 10 people
• Lung: About 6 out of 10 people
• Pancreas: About 8 out of 10 people

Organ rejection is possible. When a new organ is placed into your body, your immune system sees it as foreign and tries to destroy it. Antirejection medicines can help prevent your immune system from attacking the donor organ.

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Preparing for a Transplant

Here are some things you can do while you wait for an organ transplant.

• Be sure to go to all of your doctor appointments. You may also need to get regular blood tests and meet with your transplant team.
• Continue to take your medicines as prescribed. Let your doctor know if you're having any problems with medicines.
• Stay up to date with your routine health care. This includes well visits to your primary care doctor. It also includes things like vaccines and eye exams. If you need dental work, try to get it done as soon as possible. Let the transplant team know of any changes to your health.
• Talk to your doctor if you are pregnant or could become pregnant. This could affect your ability to get a transplant.
• Follow your doctor's directions for eating and exercising. If you want help to get to a weight that's healthy for you, you could see a dietitian. Your doctor can recommend one.
• Take care of your mental health. Waiting for a transplant can be hard. A psychiatrist, psychologist, or licensed mental health counselor can offer support during this time. And they can help you prepare for the transplant. You could also join a transplant support group.
• Don't use alcohol, drugs, tobacco, or nicotine. If you need help quitting, talk to your doctor or counselor.
• Learn more about what to expect before and after a transplant. You could talk to someone who has had a transplant. Your transplant center or doctor can give you the name of someone who is willing to share their experience with you. The transplant center may have you practice what to do when an organ becomes available.
• Prepare an advance directive if you don't already have one. It lets your doctor and loved ones know your health care wishes. It can include a living will and a durable power of attorney for health care.
• Be ready for the call. Always have your phone close by, charged and turned on, so the transplant center can contact you when an organ is available. If you can, give the transplant center the name and number of a few people who know how to reach you.
• Arrange for someone to go with you to the transplant center. They can support you by giving you a ride and remembering important instructions. They can also look for any symptoms or changes in behavior that you may have before or after the transplant.
• Plan for other help you may need. You may want help with childcare, pet care, or house-sitting while you're gone. You may need to arrange for someone to help you after the surgery. Many transplant centers require this help. It could be a family member, friend, or neighbor.
• Have a suitcase packed to take with you to the transplant center. You could bring pajamas, eyeglasses, your medical records, and other important things. Your support person may also want to have a bag packed.

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At the Hospital

When you arrive at the hospital or transplant center, final tests will be done to make sure the donor organ is one that will likely work for you.

• If your doctors feel that a transplant with this organ has a good chance of being successful, you will have transplant surgery right away.
• If your doctors decide that a transplant with this organ does not have a good chance of being successful, the organ will be given to a person who is a better match. You will return home and continue to wait for your new organ.

If your current health condition requires that you be hospitalized while you wait for a donor organ, you will receive supportive and lifesaving care (such as blood pressure support for heart failure) until you are matched with a donor organ. During that time, you will be given medicines to prepare you for the surgery and to prevent rejection.

After your transplant, the amount of time you'll spend in the hospital depends on how healthy you are before the surgery, which organ was transplanted, and how well your body accepts the donated organ.

A longer hospital stay may be needed for a heart or lung transplant than for a kidney transplant. Some people are out of the hospital within a few days after their transplant. Others may need to stay for a few weeks.

After the Transplant

After a transplant, many people say they feel better than they have in years. What you can and can't do will depend on the type of transplant you had, other health problems you have, and how your body reacts to the new organ.

You will have to take daily medicines to prevent your immune system from rejecting the new organ. You will need less of these medicines as time goes by. Because these medicines weaken your immune system, you may have to stay away from large crowds for a while and stay away from people who have infections.

You will also have regular checkups and blood tests to see how well your new organ is working. Screening for certain cancers is also very important after an organ transplant.

You may also have side effects from your antirejection medicines. And you may be at increased risk for getting conditions such as diabetes or some cancers.

An organ transplant may cause many emotional issues both for you and for those who care about you. When your organ comes from a deceased donor, you may sometimes think about that and what that meant to the donor's family.

It's common to have some depression after an organ transplant, but not everyone does. If you think you may be depressed, it is important to tell your transplant coordinator, doctor, or someone who cares about you.

You may need to make some lifestyle changes to keep your new organ healthy and strong. This can include eating healthy foods, getting regular exercise, and getting enough sleep.

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Staying Healthy

You can take steps to keep your new organ healthy and help you live longer.

• Go to your doctor appointments. Regular follow-up with your doctor is important to check for organ rejection.
• Take your anti-rejection medicines as directed. It may help to talk to someone who has had a transplant. This person can talk to you about how you can make taking these medicines part of your daily life.
• Know what to do if you miss a dose. Talk to your care team if you are missing doses. They want to help.
• Know the side effects of the anti-rejection medicines. If you have severe side effects, tell your doctor right away.
• Get regular blood and tissue tests. These tests help your doctor know if your organ is being rejected. This doesn't mean that you will lose the organ. Adding or changing medicines may still help treat or prevent rejection.
• Don't take any over-the-counter medicines before talking with your doctor. These include cold or herbal remedies. Other medicines may interact poorly with your anti-rejection medicines.

Taking steps to stay healthy

Here are some tips to help you and your new organ stay healthy.

• Eat regular, healthy meals to control your weight, blood pressure, cholesterol, and blood sugar levels. Be sure to get plenty of calcium and vitamin D to help prevent osteoporosis, or thinning bones.
• Get regular exercise. Activities like walking, exercises in the water, and yoga can help you keep your body and new organ healthy.
• Watch for changes from how you normally feel, how much energy you have, and how active you are. This can help you identify new problems as they come up.
• Tell your dentist that you have had an organ transplant. The antirejection medicines may increase your risk of mouth infections. Special precautions may be needed in teeth cleaning or other dental work.
• Stay away from people who are sick. Your immune system is weakened by the antirejection drugs. Before you do any traveling, talk with your doctor to see if you need to take any precautions.
• Carry a medical identification card or wear a medical ID bracelet that states that you have had an organ transplant.

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Becoming an Organ Donor

The following tips can help you plan to be an organ donor.

• Get more information. Most people can be organ donors. If you are interested in donating organs or tissues, contact the United Network for Organ Sharing (UNOS) at 1-888-894-6361, or go online at www.transplantliving.org to learn more.
• Put your name on your state's donor registry. Many states give you the option to become a donor when you apply for a driver's license or when you renew your license. Other states have a form you can fill out in person or online and file with a state organ donor registry. You can go to www.organdonor.gov to find your state registry. Either way, your name goes on a list of possible donors, and your status is noted on your driver's license. To find out what's required in your state, check with your doctor or call your local Department of Motor Vehicles office.
• Let your family, friends, and doctor know. Include your wish to be an organ donor when you prepare a living will or advance directive.

People of any age can register to be organ donors. In many states there's no minimum age, though an adult might have to sign for someone under age 18.

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