Getting Ready for a Transplant

Though dialysis is the preferred choice for some people, many other people with kidney failure choose to have a kidney transplant. Transplantation has many advantages, such as a lifestyle free from dialysis and fewer fluid and dietary restrictions. Kidney transplants, when successful, usually provide a better quality of life for most people, and they are less expensive than dialysis over time.

Some things to think about before saying yes to a kidney transplant are:

• the risks and benefits of a transplant,
• medications and their side effects,
• financial coverage and
• your ability to continue follow-up care as well as follow directions.

The final decision about kidney transplantation is yours. You will need to ask questions at your evaluation in order to be comfortable with your final choice. Therefore learning as much as you can about all options of kidney replacement therapy will be helpful.

To learn more about transplantation, visit www.kidney.org and talk to your doctor and health care teams.

There are two sources of kidney donations: a living donor or a deceased donor. Transplantation from a living donor has a slightly higher success rate, 95% survival rate (2004) after one year, compared to 90% survival rate for deceased donor transplants.

One advantage of living donation is the ability to plan when the transplant will take place. This allows the transplant team to perform the surgery under the best conditions including when the donor and recipient are at their healthiest. If a living donor does not match your blood type, there are still options for transplant. Some living donors and recipients participate in “paired exchange” or “swaps”. This is when two donor recipient couples (or three or four) do not match; the pairs are able to donate to each other’s partners. This makes it possible for several transplants to take place at once, each with matching donors.

Also available (but still experimental and not covered by insurance) is a process called plasmapheresis. This allows a living donor’s blood to be cleaned and processed so it will match with the recipient’s blood. Not everyone is eligible for plasmapheresis, but it can help some patients have a successful transplant. Sometimes, a living donor will choose to donate to the transplant list, allowing someone to receive a living donation as well. All of these options can be considered when you are pursuing living donation.

Planning a head for a kidney transplant can lead to better health after transplant. Of course, not everyone has the time to plan ahead, and some people have sudden onset kidney disease requiring quick action. However, for the many people whose kidney disease progresses slowly, the timing of when you receive your transplant can improve your health afterwards.

People who are able to find a living donor, or are on a waiting list for a deceased donor where the anticipated wait time is short, are often able to avoid dialysis altogether, or at least limit the time they spend on dialysis. Avoiding or limiting time on dialysis to a year or a year and a half has been shown to contribute to better health after the transplant surgery. An early or pre-emptive transplant, from a living donor if possible, can increase the likelihood of living longer and adding to quality of life after transplant.

You can learn about living donation at www.livingdonors.org. Friends and family are often encouraged to learn about living donation. Even if friends and family for whatever reason are not able or willing to donate an organ directly to you, you can ask them to help you find someone who will.

We have found that when people who need a transplant first talk about it to their family, then friends, then acquaintances, and keep widening their circle of contacts, often someone will be found as a potential donor. Some people do ask directly for people to donate to them, but not everyone is comfortable asking. Recipients have told us that just telling others about their need, the process can peak interest and may be enough to make people interested in learning about donation and how they can help, whether it is by donating or in some other manner.

The United Network for Organ Sharing (UNOS), www.unos.org, is the organization that holds the U.S. government contract to manage the list of potential organ recipients. The way the list operates is constantly under revision to make sure it is as fair as possible. It is a work in progress, since new technology constantly raises issues about matching and waiting that must be considered.

To be eligible for transplant, you must be evaluated by a transplant center. For information about the transplant centers that are most easily accessible to you or best able to work with your individual needs, visit the UNOS facilitated website at www.transplantliving.org . This site was designed for patients and includes ways to access a list of all transplant centers in the United States.

Those eligible for a kidney transplant must be healthy enough to have the surgery and be free from serious conditions such as cancer and infection. You must also be able to follow the complex treatment after surgery, including the medication schedule. Different transplant centers have different expertise in dealing with “high risk patients” who are typically patients with other serious conditions or illnesses besides kidney disease that could make the outcome of transplants more difficult. If you are turned down at one center, you can always get a second opinion at another.

Your previous medical history and records are reviewed and you will meet with the transplant team, which consists of a surgeon, transplant coordinator, social worker and others depending on your particular situation. The financial coordinator and social worker can talk to you about the costs involved. Be prepared to ask questions regarding what you should be prepared to pay and what your insurance and/or Medicare will cover.

You will learn more about the risks and benefits of surgery and transplantation and your role as a partner in your care. You can ask for a tour of the transplant center and to meet other transplant recipients to learn about their experiences. As a transplant recipient, you are the most important member of your health care team

The purpose of the evaluation is to determine who is a good candidate for transplant and to decrease post-transplant complications. Usually this includes the following tests prior to going on the transplant waiting list:

• Medical history
• Blood tests such as tissue typing and infection screening
• Chest x-ray
• Electrocardiogram (EKG)

Over 95% of U.S. citizens are eligible for Medicare (health insurance paid for by the government) when they are diagnosed with end stage renal disease (ESRD). Forms must be filed with the Social Security Administration by the doctor and social worker and you must be advised how to follow-up to complete the process. To obtain Medicare part B (which allows the anesthesiologist and surgeon to be paid and to obtain 80% coverage for immunosuppressant medications after the operation) you must pay a monthly premium. Most people obtain Medicare part A for free, and some people choose Medicare part D to help with the cost of other medications. In addition you may have private insurance. Talk to your social worker and/or the financial counselor at the transplant center about what your financial responsibility will be. The donor (living or deceased) operation and evaluation costs are covered by the recipient’s insurance or Medicare.

The living donor evaluation, surgery and immediate recovery until discharge are covered by the recipient’s insurance, Medicare or the transplant center.

To help with travel, lodging and incidental costs that allow the living donor to get to the transplant center for the surgery, the donor can speak to the transplant team about any financial help that might be available. There is a grant program available to help some living donors with these costs. It is managed by the University of Michigan and the American Society of Transplant Surgeons; transplant programs can access its services.

It is best that the living donor be healthy and covered by his or her own health insurance after donating. This helps to minimize any physical and financial problems that may occur independently of the donation and/or perhaps from the donation. If there is proof that a problem arose as a direct result of the transplant surgery, usually the medical care needed will be covered by Medicare, the recipient’s private insurance or the transplant center.

There are no costs to the deceased donor’s family for the gift of an organ or tissue to a recipient. All expenses of the donation are covered by Medicare, the recipient’s insurance, or the transplant program.

Keep the name and contact information of the transplant center handy. Let the transplant center know of any major changes in your health status, including your weight. Let them know of your whereabouts and phone numbers. At a certain time, you will most likely be given a beeper so that you can be contacted to receive the kidney if one becomes available. At regular intervals (sometimes yearly) you will be required to have a physical examination at the transplant center.

Look under “T” for Transplantation in this A-Z guide.

Visit www.nkfkidneypatients.org the Patient and Family Council and
www.transplantreicpients.org transAction Council

Both of these councils are part of “People Like Us” and have message boards where you can communicate with peers who have kidney disease. You may also read book reviews, newsletters and information about transplantation.

If you would like more information, please contact us.

© 2015 National Kidney Foundation. All rights reserved. This material does not constitute medical advice. It is intended for informational purposes only. Please consult a physician for specific treatment recommendations.