The Waiting Game: How To Endure The Transplant Wait List
If you are on the organ transplant waiting list , you have probably experienced all kinds of emotions: Excitement, nervousness, anxiety, fear, joy, guilt. Maybe all in one day!
The average time spent on the waiting list for a kidney varies from region to region. But for most patients, that wait is measured in years, not months. As the years go by, some people go about their daily lives and forget they are waiting for a life-changing call. Others feel mounting anxiety and hopelessness.
All of those feelings are completely normal, says Heather Ambroson, PsyD a psychologist and postdoctoral fellow at University of North Carolina Transplant Clinic. Initially, there is usually excitement to get on the wait list. After you settle back into the daily grind, that excitement wears off, she says. It is very normal to have mood changes while you are going through this process.
The good news is that there are steps you can take to make the wait a little less stressful.
Do not hide your feelings. Many people on the transplant list put on a brave face, even if they are struggling inside. Some are even afraid to tell their providers what they are feeling, for fear it will hurt their chances of receiving an organ. Some people think they might be taken off the wait list if they are feeling depressed or anxious, because their doctors will think they are not a good candidate, Ambroson says. But that is not the case.
What Is Kidney Disease?
Receiving A Kidney From A Deceased Donor
The average wait for a deceased donor kidney transplant in the UK is 2-3 years.
Some patients wait much longer than average, some wait a shorter time. To receive a kidney from a deceased donor, you will need to go on the transplant waiting list.
Your transplant team will try to predict how long they think your wait might be. A calculator is being developed by NHS Blood and Transplant statisticians to help estimate this. When it’s ready, you’ll find a link to the calculator here.
Not all kidneys from deceased donors are the same some kidneys might carry more risks than others. If you are willing to accept a higher risk kidney, then you are likely to wait a shorter time on the transplant waiting list.
In general, you wont wait as long for a kidney transplant if you:
- Have blood group AB
- Have a common tissue type
- Have fewer antibodies in your blood
Waiting For A Kidney Transplant
While you are waiting for a kidney transplant:
- Do not miss appointments with your transplant team, primary doctor, and other doctors.
- If you are on dialysis, do not miss your dialysis sessions.
- Let your transplant team know if you experience any changes in your health, even if you feel like you just caught a cold.
- Take all medicines prescribed to you by your transplant team. Let the transplant team know if you are taking medicine from another doctor.
- Carefully follow the eating and exercise plan given to you by the transplant team. You may be asked to see the dietitian or physical therapist.
- Manage your health care by keeping all of your medical papers in a folder or binder so they are all available in one place.
- If you are a woman, talk to your transplant team about birth control, and what you should know about having children before and after your transplant.
- Immediately let your transplant team know if any part of your contact information changes, especially your address or phone number.
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Additional Medical Testing Required For Transplant
If you are a candidate for an organ transplant, you will undergo further testing. If your organ failure happened quickly, is progressing quickly or is considered an emergency, the testing may occur in a matter of days rather than weeks.
Your testing will also evaluate your ability to tolerate surgery. For example, if you are seeking a liver transplant, you may still be tested for heart, kidney, and lung function to make sure you are able to tolerate surgery and anesthesia.
You will be evaluated for the presence of cancer, as an active case is a cause for exclusion from transplantation. There are exceptions, such as skin cancer, which would not prevent you from receiving a new organ. You may be asked to have a mammogram, a colonoscopy, or another medical testing to help rule out the possibility of cancer.
If you are approved for the transplant list, your testing will include blood tests that look at your genetic makeup since it is a component of matching organs with recipients.
Evaluation Of Addictive And Harmful Behaviors
If your disease is the result of addictive or abusive behaviors, such as cirrhosis caused by alcoholism, you will be expected to be free of such behaviors. Transplant centers vary in their policies regarding the length of time a patient must be drug-free to qualify for a transplant, but most will test for drugs regularly.
Social workers will help you seek counseling and support groups for your addictions if needed. An inability to control addictive behaviors will exclude patients from being listed for a transplant.
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Choosing A Transplant Center
You will need to choose the transplant center where you want to be listed. In the United States there are more than 250 transplant centers. For a full list click here. You may want to consider the following when choosing a transplant center:
- Distance of the transplant center to your home: When you are on the national waiting list, you may get a call any time that a kidney match is available for you, and will need to reach the hospital in a short amount of time. The specific amount of time depends on the hospital, and you should talk to the transplant team about this before getting listed. Usually you will need to reach the hospital within 24 hours after you are contacted about an available kidney.
- Your insurance coverage: Some hospitals accept only certain insurances for transplant surgeries. Discuss your health insurance with the transplant coordinator before choosing a hospital.
- The experience of the transplant team: You may want to know whether the transplant center is new or whether it is well established. This is a personal preference that may matter to some, and not as much to others. For more information about the performance information of a certain transplant center, visit this website.
What Is The National Waiting List
The waiting list is a computer database that contains medical information on every person who is waiting for any type of organ transplant in the U.S. and Puerto Rico. You will not have a number ranking for transplant based on all the other persons who are waiting for your organ. You also will not move up or down each time someone receives a transplant.
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Your Ability To Manage Your Health Before Transplant
The transplant center will be looking for indications that you are able to manage your health and that you care about maintaining your health whenever possible. For example, if you are waiting for a kidney transplant but you are not following your healthcare providerâs instructions, you may not be considered a candidate. The post-transplant regime is rigorous and requires diligence your ability to follow your current regimen will be considered an indication of your willingness to take care of yourself after surgery. Non-compliance with important health maintenance instructions, such as drinking alcohol while in treatment for a liver problem, could exclude an individual from the liver transplant list.
What To Expect: Support Before During And After Transplant
We try to make evaluation and appointments as thorough and convenient as possible for you and your loved ones. Transplant Surgeons and Nephrologists participate in your transplant evaluation, as well as a Transplant Social worker, Dietician and Coordinator. These experts will work with you from diagnosis through discharge.
Our post-transplant protocols will help you return home as soon as possible after transplant. Our dedicated physicians and providers often continue to care for you for years to come. If you and your physician prefer, we will help your referring physician provide your follow-up care and get any needed answers. Our transplant recipients are part of the UCLA family, and we are available to care for them at any time.
Learn more about our patient education.
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Becoming Inactive On The Kidney Transplant Waiting List
Please inform your kidney transplant coordinator of any travel that will take you outside the 12-hour window for kidney transplant surgery.
If you must travel, we may place you in an “inactive status” on the kidney transplant wait list.
Other reasons we may place you on the inactive list include:
- Needing further testing.
- Having certain health problems that might increase the risk of kidney transplant surgery.
Inactive status will not affect the total amount of time that you have been on the active waiting list.
How The Transplant Waiting List Works
The kidney transplant waiting list is a list of transplant candidates maintained by the United Network of Organ Sharing . UNOS holds the contract to operate the Organ Procurement and Transplant Network . How do I become eligible to be placed on the waiting list? A referral is needed from your physician in order to be evaluated by a transplant program as a potential transplant candidate. Your next step would be to select a transplant hospital, with factors to consider including location, compatibility with your insurance program and financial arrangements. Once you have selected a hospital, schedule an appointment for an evaluation to find out if you are a candidate for transplant. During the evaluation, ask questions to learn as much as you can about that hospital and its transplant team. If the transplant team members determine that you are a suitable transplant candidate, they will add you to the national list of all people waiting for a transplant. Your transplant center will be requesting laboratory tests from your dialysis facility to keep your blood samples up to date.
How long is the wait for a kidney? The average wait time for a kidney transplant can vary from two to ten years, depending on several different factors:
ABO Blood Type The kidney needs to come from a donor with a compatible blood type.
About the Author
For fun, she is also a licensed pilot and enjoys flying patients for Angel Flight and rescue animals for PilotsNPaws.
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Kidney Transplant Waiting Time
A mix of factors will determine which kidney transplant candidate receives which organ.
These factors include:
- Tissue match between kidney donor and candidate.
- Blood type.
- Length of time on the kidney transplant waiting list.
- Whether the potential kidney transplant recipient is a child.
- Body size of both donor and candidate.
- Geographic area.
What If I Move Or Change My Phone Number
It is very important that we have up-to-date contact information for you, particularly phone numbers. A transplant call can come at any time and if we cannot get hold of you, we will have to offer the kidney to someone else. Please let the receptionist or dialysis staff know if you have changed phone number or moved home. Make sure your phone is in working order and always switched on. You never know when you might get that call!
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Why Does Donor Diversity Matter
Still, a more diverse donor registry gives ethnic minorities on the transplant waiting list a better chance to find a good donor match. Because the immune system markers used to match organ donors and recipients are inherited, people with rare markers are more likely to match someone from a similar ethnic background. Learn more about matching.
How Long Will I Wait For A Kidney
After you have made the decision to have a kidney transplant there will be a period of waiting until a suitable donor kidney becomes available – unfortunately we cannot predict when this will be. UK Transplant allocates kidneys by blood group and tissue type. This system is in place to ensure the best match between you and the donor kidney. The wait can be anything from a few weeks to many years but on average, patients who are blood group A or AB wait just over two years and patients who are blood group O or B wait just over three years. If your tissue type is rare or you are sensitised to certain tissue types you may wait longer than the average.
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Learn About Living Donation
Since less than 1% of people pass away in the conditions necessary to become an organ donor there will likely always be a shortage of necessary organs. Thankfully, there is a great way to help save lives and address much of the transplant waiting list.
Since 90% of individuals are waiting for a kidney transplant we can help save lives through living donation.
A healthy living person can donate one of their kidneys or a part of their liver. Whether you know someone in need of a transplant or youre interested in becoming an altruistic donor you can learn more at Living Donation California.
How To Get On A Kidney Transplant Waiting List
If you or your child have chronic kidney disease or kidney failure, you may be eligible for a kidney transplant. Even if you are currently on dialysis, it’s best to get on a waiting list as soon as possible. Thats because people on dialysis do not do as well as people with healthy transplanted kidneys.
Don’t count on your dialysis center to refer you to a transplant center. Unfortunately, in a large proportion of cases, they dont. If you want to get off dialysis and get a new kidney, you have to be proactive.
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How Do I Get On The Transplant Waitlist
- Ask your healthcare professional for a referral to a local transplant center or contact a transplant center in your area. Learn as much as possible about the different transplant centers.
- Choose a transplant center that best fit your needs. Things you should consider when choosing one include:
- Insurance coverage and cost
- Location for ease of going to and from the transplant center
- If you have a living donor, be sure the transplant center performs living donations and if your live donor isnt a good match, that the transplant center participates in a kidney paired exchange program.
- Support group availability
Find A Transplant Center
The next step is to find a kidney transplant center by checking with the United Network for Organ Sharings Directory of Transplant Programs.
Before you contact a transplant center, check to see how it stacks up to other centers in terms of kidney transplant outcomes, such as patient and graft survival, and waitlist activity. The Scientific Registry of Transplant Recipients has national data on these issues.
Each transplant center has its own criteria that potential recipients must satisfy in order to get on the waitlist. You can get on the waiting list at multiple centersit’s called “multiple listing”but remember you may incur additional costs for testing and evaluation. Be aware that matching kidneys first go to local residents, then regional residents, and then they are made available nationally.
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How Long Will I Have To Wait
Most people in the United States wait about 4 years to get a kidney from the waitlist. Some people wait longer. The average wait time will vary depending on which transplant center you register with it could be anywhere from 4 months to more than 6 years. Some people never get a matching kidney from the list. 1 out of 20 kidney patients die each year while they wait for a kidney. Your place on the waitlist and how long you will have to wait for a kidney depends on a lot of different factors, such as:
- How long you have been on dialysis
- Your blood type people with a blood type that is more common or works better with other blood types usually wait less time for a kidney
- Your age
- Having certain antigens and antibodies in your blood
- Antigens, such as diseases or poisons, come from outside your body. Antibodies are proteins in your body that attack antigens to protect you from disease.
The waitlist is made to be fair. It isnt based on:
- How much money you have
Your time on the waitlist may be shorter if you and your doctor agree that a high-risk kidney could be a good choice for you. A high-risk kidney means that it is donated from a person over the age of 60 or from a person whose kidney doesnt work as well. Ask your transplant team for more information about this option or learn more in the transplant process section.
What You Should Know About The National Kidney Transplant Waiting List
For many of the millions of people living with kidney failure, a kidney transplant is considered the most ideal and desirable treatment option. However, transplantation is a process that can take months or even years due to the number of people in need of a new kidney.
If you dont have a living kidney donor or if your donor arrangements arent finalized, registering on the national kidney transplant waiting list for a donor kidney is an important step. Once youve registeredwith help from your social worker and a referralyoull be on the list to receive a kidney from a donor when a match becomes available.