Category: Family Health

  • Living donation patient brochure – OPTN

    Living donation patient brochure – OPTN

    Living donation

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    Welcome to our question and answer page on living donation.

    Below is commonly requested information regarding living organ donation. We hope you find it helpful.

    If you have other questions or comments, contact the Organ Procurement and Transplantation Network (OPTN) Patient Services line at (888) 894-6361 or submit them online here.

    What is living organ donation?

    Living organ donation is when a living person donates their organ or a part of their organ to transplant into another person.

    Most living donors donate one of their kidneys or a part of their liver. Other organs can be donated by living donors, but are much rarer.

    Living organ donors make thousands of transplants possible every year. There is a lot to learn before you decide whether donating an organ is right for you. This brochure contains information about living kidney and liver donation. Talk to staff at a transplant hospital if you would like to learn more about other types of organ donation.

    As a living donor, you can shorten the wait for a transplant patient

    In the United States, the demand for organs exceeds the supply of donated organs. Many people wait years for an organ from a deceased donor.

    Only about half of the people in the United States sign up to donate their organs when they die. This number is different in every state and region, so the wait can be longer depending on where someone lives.

    Every year, thousands of people get removed from the waitlist because they have become too sick to have a successful transplant.

    To shorten the wait, family, friends, co-workers, and even strangers can offer to be living organ donors.

    Living donor transplants can help shorten or eliminate the wait for an organ by:

    • Giving transplant candidates more options to plan.
    • Helping kidney transplant candidates get an organ transplant before they need to begin dialysis.

    Living organ donors make thousands of additional transplants possible each year.

    Living organ donors can improve the changes of transplant success

    Kidneys from living donors generally have high success rates:

    • More than 98% of transplanted kidneys from living donors are still working one year after transplant.
    • On average, living donor kidney transplants work longer than kidney transplants from deceased donors.

    Living donor liver transplants also have as good or better outcomes compared to liver transplants from deceased donors.

    Only you can decide whether living donation is right for you

    No one can make the decision to donate for you, and no one should pressure you.

    Before you decide, learn as much as possible about living donation so you know the risks and benefits. This brochure gives basic information about living donation. The best place to learn is at a transplant hospital. Talk to transplant hospital staff to learn more.

    When you learn about living organ donation at a transplant hospital, bring family or friends with you.

    Including your family or friends will:

    • Help you remember what the transplant hospital staff teaches you.
    • Help you think of questions to ask.
    • Let your family and friends know the best way to help you.

    Can I be a living donor?

    To be a living donor, you must:

    • Be an adult (over age 18) able to make an informed decision
    • Be in good physical and mental health
    • Understand the risks and benefits of living donation
    • Decide for yourself whether living donation is right for you

    Both you and the transplant hospital staff have to decide whether living donation is right for you. The transplant hospital staff will need a lot of information about you to make sure you are healthy enough to donate.

    To help decide whether donation is right for you, transplant hospital staff will:

    • Give you a full physical examination and medical tests
    • Ask about your medical history
    • Ask about your social support
    • Assess your mental health
    • Ask about your finances and whether you can take time off from your commitments
    • Inform you about the risks and benefits of living donation
    • Make sure that your decision to donate is yours alone

    Certain health issues may cause the transplant hospital staff to decide you should not donate an organ. This is for your health and safety. Here are some examples of such health issues:

    • Uncontrolled high blood pressure
    • Untreated psychiatric condition
    • Cancer
    • Diabetes
    • Certain infections

    Do I have to know the person to whom I donate an organ?

    Giving an organ to a specific person is called directed donation

    In directed donation, a donor who is medically compatible may be:

    • A blood relative of the transplant recipient, such as a parent, brother, sister, or adult child
    • Someone close to the transplant recipient, such as a spouse, a friend, or a co-worker
    • Someone who the donor has heard about but does not know personally

    Non-directed donation is when you want to donate but do not know – and may never know – the person to whom you will donate 

    In non-directed donation, the donor may be:

    • Someone wishing to donate to a stranger on the transplant waitlist
    • Someone who begins the process to donate to a friend or family member but later decides to donate to a stranger after the friend or family member gets an organ from someone else

    A transplant hospital can match a non-directed donor to a transplant candidate who is a match. Sometimes, a match happens through a paired kidney exchange. Kidney paired donation helps more transplants happen. That process will be explained later.

    Some non-directed donors wish to meet their transplant recipient. Sometimes that happens and sometimes it does not. It is a personal choice. The transplant hospital will help make a meeting happen only if the living organ donor and the recipient both wish to meet.

    What if I want to donate my kidney to a specific person but we do not match?

    Sometimes, someone wants to donate a kidney to a specific person but tests show the two people are medically incompatible. That can happen because of different blood types or other test results that show the kidney has a high risk of rejection. There are still ways you can donate, including:

    Kidney paired donation (KPD) is when a computer matches donors and recipients to create compatible pairs. Think about it as a swap or an exchange. Here’s how it works:

    • You want to donate a kidney to someone, but you are not medically compatible.
    • Another person wants to donate a kidney to someone, but they also do not match.
    • A computer matches you with a compatible recipient, and their donor matches with the person you want to help.
    • Swapping donors allows both transplants to happen.
    You want to donate a kidney to someone, but you are not medically compatible. Another person wants to donate a kidney to someone, but they also do not match. A computer matches you with a compatible recipient, and their donor matches with the person you want to help. Swapping donors allows both transplants to happen.

    KPD allows hundreds of people to get a transplant each year. The person you want to help may get a transplant more quickly in an exchange.

    How do I start the process to become a living donor?

    The process starts at a transplant hospital.

    • If you want to donate to someone you know, such as a family member, friend, or co-worker, ask that person to put you in touch with their transplant hospital.
    • If you want to donate to someone you know but want to get tested before telling the transplant candidate, talk to their transplant hospital. Many transplant hospitals will test you without telling the transplant candidate.
    • If you want to donate an organ to someone you do not know, call a transplant hospital near you to talk about it.

    Find a list of transplant hospitals.

    Will someone at the transplant hospital help me with the process?

    If you and the transplant hospital staff agree that it makes sense for you to be evaluated, the transplant hospital staff will put you in touch with an independent living donor advocate.

    An independent living donor advocate’s job is to protect you. Their job is not to think about what the transplant candidate needs or make transplants happen. The independent living donor advocate will:

    • Protect you and your best interests
    • Support your rights, such as making sure you have the time and information you need to decide whether donating is right for you
    • Make sure you know the risks and benefits of living donation
    • Help you walk away if you decide living donation is not right for you

    The independent living donor advocate will make sure you have information about:

    • Consent: When you agree to give medical information and undergo testing
    • Evaluation: What tests you need to take and why
    • Medical and psychosocial risks: Possible problems you may have during or any time after donating, including coverage for childcare or eldercare
    • Financial risks: Issues with expenses, work, or insurance
    • The surgery: What to expect the day of the operation and the risks
    • Recovery: What to expect after surgery and getting back to normal activities
    • Medical follow-up: Tests you are required to have after you donate

    Independent living donor advocates want you to share anything that is on your mind. If you have fears, concerns, or second thoughts, your living donor advocate wants to know. Sharing your thoughts is the best way to help your living donor advocate support you and help you decide what is right for you.

    The advocate will not share your medical or other information with the transplant candidate.

    Step 1: Consent to be tested and provide health information

    When you call a transplant hospital, a living donor staff member will briefly explain the donation process and ask if you agree to give some information about your health. Your consent begins the evaluation process.

    Different transplant hospitals might ask you about your health in different ways:

    • Online
    • Over the phone
    • In person

    Your answers help the transplant hospital team decide whether to continue to the next step. Some health issues are minor and donation may still be possible.

    Transplant hospitals may have different opinions about certain health issues and their risks. Transplant hospital staff will explain their opinions to you.

    Step 2: You and the transplant hospital start a careful evaluation process

    If you and the living donor team both decide to continue, you’ll start a wide-ranging evaluation process. The purpose is to protect you and the potential transplant recipient. It also helps to make sure a transplant is likely to have a good outcome.

    The transplant staff members ask questions about all areas of your life, such as:

    • Why do you want to donate?
    • How do you think donating will affect your life? Your family?
    • Can you afford the non-medical expenses, like travel?
    • Who will help you afterwards?
    • Can you afford time away from commitments?
    • Do you have any risky habits or behaviors?

    Some of the questions are really personal. The purpose is to make sure donation is safe and right for you.

    Be sure to ask any questions you have. There is no such thing as a bad question or too many questions. Answering all of your questions is one of the most important jobs of the living donor team. Bring a family member or friend with you to help you remember everything you need to know.

    What tests will I have during my evaluation?

    To make sure you are healthy enough to donate, you will take a lot of tests. The purpose of testing is to protect you.

    Some of the tests also give information about the likelihood of a good transplant outcome if you become a living donor. Your medical information and test results are confidential. By law, transplant hospitals cannot share your medical information with the transplant candidate without your permission.

    Here is a list of the kinds of tests living donors have to take. Each test will be described below.

    • Psychosocial evaluation
    • Blood tests
    • Heart and lung tests
    • Tests of the organ to be donated
    • Routine health tests

    Psychosocial evaluation

    Living donor team members will ask you questions about your life. This helps you and the transplant hospital staff decide whether living donation is right for you. Here are some examples of the questions:

    • Why do you want to donate?
    • Do you feel pressure from anyone to donate?
    • How well do you understand the process, risks, and benefits so that you can make an informed choice?
    • Will donating affect your job? Your finances?
    • How might donating affect other parts of your life, such as caring for a child or a parent?
    • Who will help you during recovery?
    • What are your family’s views about your donation?
    • Do you have any mental health issues that could be made worse by donating?
    • How do you think you will feel after donating?
    • How do think you will feel if things do not go as you hope they will?

    Blood tests

    Some blood tests give the transplant hospital staff information about your health. Other blood tests show the staff whether you are a match with a transplant recipient.

    • Blood type compatibility: Blood tests let the transplant hospital know whether you and a transplant recipient have compatible blood types.
    Donor blood type Recipient blood type
    O compatible with: O, A, B, and AB
    A compatible with: A and AB
    B compatible with: B and AB
    AB compatible with: AB
    • Tissue typing: This blood test checks the tissue match between you and a transplant candidate. Transplant hospital staff use this information in caring for the transplant recipient. Even if you and the recipient are not tissue matched, the recipient can still have a successful transplant because of medications to combat organ rejection.
    • Cross-matching: This blood test checks for factors associated with increased risk of organ rejection by the transplant recipient.
    • Transmissible diseases: These blood tests look for infections or conditions that a living donor could spread to the transplant recipient. The law requires medical staff to report certain infections confidentially to public health officials.

    Heart and lung tests

    • A chest x-ray, an electrocardiogram, and other tests will be conducted to make sure your heart and lungs are healthy enough for you to be a donor.

    Tests of the organ you wish to donate

    • CT or MRI scan to let the transplant hospital staff look at the organ you wish to donate.
    • Kidney donors have blood and urine tests that give information about their kidney health.
    • For liver donors, some transplant hospitals use a small needle to take a tiny piece of the liver to make sure it is healthy enough to donate.

    Routine tests depending on your age and the tests you have had in the past

    • A colonoscopy
    • Skin cancer screening
    • Gender-specific exams

    Not all transplant hospitals require the same tests. Your transplant hospital staff will explain what tests you need. They also will explain why the tests are important.

    Getting through all the tests takes time. If you are donating to someone whose hospital is far away, you may be able to do some of the medical tests closer to your home. Talk with the transplant hospital staff about options.

    Who decides if I may donate?

    If you pass the evaluation process, the final decision about whether you will donate is yours.

    Your decision must be informed and voluntary.

    An informed decision means you understand:

    • The donation process
    • The risks and benefits of donation
    • The other options a transplant candidate might have, such as dialysis or transplant from someone else, living or deceased

    A voluntary decision means you:

    • Feel no pressure from anyone to donate
    • Know you may decide not to donate at any time
    • Are not expecting a promise of money or anything of value

    When you think about whether to donate, it is helpful to talk with people

    The decision to donate is not easy. There is a lot to think about. Donation could impact your health, your family, and your work. Sometimes people offer to donate an organ before they learn about the risks and benefits. After learning more, some people decide that donating is not right for them. They may worry about letting someone down.

    Talking through your thoughts can help. Talk with family members, close friends, or anyone you know who is a good listener. You may also want to talk with living donors. Transplant hospital staff can help find living donors who would be happy to share their experience with you.

    Other organizations, like the National Kidney Foundation, can put you in touch with a donor. Call the National Kidney Foundation’s PEERS Program at (855) 653-7337 (855-NKF-PEER) or email nkfpeers@kidney.org.

    The most important thing is that you do what you feel is right for you.

    People may decide not to donate for many reasons. Your decision to donate or not, and the reasons for your decision, are yours to make.

    If you decide not to donate at any point, for any reason, talk with your transplant hospital social worker, donor coordinator, or your independent living donor advocate. These staff members are there to help you. They want to hear your thoughts, concerns, and feelings. The transplant hospital staff will keep your reasons for deciding not to donate private. They can help you think about what to say if people ask questions about why you are not able to donate.

    What are some of the risks if I donate?

    When someone donates any organ, there are different kinds of medical risks.

    • Immediate risks: During or right after surgery
    • Short-term risks: In the year or so after surgery
    • Lifetime risks: Anytime during your life

    The transplant hospital staff will explain all the different risks of living donation.

    Your transplant hospital staff will talk with you about:

    • How likely the risks are to happen
    • Whether the risks are serious
    • Whether the risks are in the short-term or could happen at any time
    • Whether and how the problem would be treated

    Risks differ from person to person.

    Every surgery has risks. Here are some examples of the problems that are possible during or right after kidney or liver donation surgery:

    • Pain
    • Infection
    • Bleeding
    • Blood clots
    • Injury to tissue or other organs
    • Pneumonia
    • Allergic reaction to anesthesia
    • Death

    When someone donates a kidney, they live with one kidney for the rest of their life. With one kidney instead of two, living kidney donors have reduced kidney function. Here are some of the possible risks of kidney donation:

    • Hernia
    • Organ failure (needing treatment or possibly transplant)
    • New or ongoing high blood pressure
    • High blood pressure after pregnancy

    When someone donates a part of their liver, the part they keep and the part they give to a transplant recipient both grow to almost full size. Here are some of the risks of liver donation:

    • Wound infections or hernia
    • Bile leakage
    • Intestinal problems (blockage)
    • Organ failure (needing treatment or possibly transplant)

    Remember, the best place to learn about risks is from your transplant hospital staff. If you hear about other possible risks, always go back and talk to your transplant hospital staff. When you make your decision, you need facts. Your transplant hospital is the best place to get them.

    Not every possible lifetime risk is known

    Your transplant hospital staff will give you some information about the lifetime risks of living organ donation. However, transplant hospital staff cannot tell you every possible long-term risk. Based on the best information known so far, overall risks to health are considered to be low for those determined to be healthy enough to donate.

    Donating is a lifetime decision. All living donors should commit to a lifetime of healthy habits and healthcare. Living donors need to have medical follow-up care after donating. Living donors also should go to their local doctor for a health check-up every year. You can manage health risks by taking good care of yourself and controlling things like your blood pressure and weight. Your doctor can help you.

    How might I feel after living organ donation?

    About 90 to 95 out of every 100 donors say they would not change anything about their decision to donate.

    They would make the same decision to help someone. They would go through all the screenings, tests, and surgery. They would take time away from their lives, jobs, and other commitments to recover. They would do all of that to help someone.

    They feel good about extending the transplant recipient’s life. They feel satisfied about improving the transplant recipient’s quality of life.

    Sometimes, living donors feel regret or resentment. Some say they feel depressed. This can happen even years after donating. Some examples are when:

    • A donated organ does not work well in the recipient after transplant surgery
    • The donor or the transplant recipient has medical problems after surgery
    • The donor’s scars do not fade as much as the donor expected

    If this happens to you, you may need support from a professional to work through these feelings. Be sure to talk with the transplant hospital staff in advance about these and other risks. If you donate and have concerns afterward, ask your transplant hospital or independent living donor advocate to help you find support.

    How long does it take to get back to normal life after donating?

    After surgery, living donors need time and help from family and friends before getting back to routine activities. Here are some tasks and the average time living donors take to return to each.

    Kidney donors Liver donors
    Stay in the hospital about 2-3 days about 5 days
    Drive a car about 2 weeks about 2-4 weeks
    Get back to pre-donation activities about 4-5 weeks about 8 weeks
    Lift heavy items about 6-12 weeks about 8-12 weeks

    Every donor is different. Some donors get back to their lives quickly. Others say they feel tired for quite a while after donation. Since you do not know how you will feel, it is important to have family and friends ready to help you for as long as you need. If you take more time than other donors, let your transplant hospital staff know.

    Will I need follow-up medical care after I donate?

    After you donate an organ, you need to take good care of yourself and have yearly medical check-ups with your doctor.

    “Everyone says I gave the gift of life when I donated. Doing my follow-up and seeing my doctor every year to make sure I’m ok is also a gift. It’s a gift I give to myself and my family.” – Ron

    All living donors need certain tests six months, 12 months, and 24 months after surgery, but these may vary according to the transplant hospital. Ask the transplant hospital staff:

    • What tests will be done
    • Where the tests will happen – at the transplant hospital, a local lab, or at your own doctor’s office
    • Who will pay for follow-up

    Sometimes, even if you feel well, tests may show you need treatment. Follow-up is very important. Transplant hospitals must track and report to the OPTN whether you get the tests you need after you donate.

    Check-ups help the transplant hospital staff make sure you are healthy. They give you a chance to talk about how you feel and what you might do to be as healthy as you can be. Your follow-up also gives transplant hospitals information that can help future donors.

    Commit to your required follow-ups after donation and see your family doctor every year.

    Who pays the costs if I decide to donate?

    Before you decide whether to donate, learn about all the possible costs and which, if any, you may have to pay. Transplant hospital staff will talk with you about living donation expenses and how they are usually paid.

    A transplant candidate’s insurance generally covers a living organ donor’s medical expenses.

    These expenses include a donor’s evaluation, tests, and surgery. Talk to your transplant hospital staff if you need help paying for other tests you may need to have done (colonoscopy, or a mammogram for women, or a prostate exam for men).

    The transplant candidate’s insurance is not likely to cover other costs, such as:

    • Medical care if your evaluation shows that you have a disease that needs to be treated
    • Long-term medical care if the donation causes you problems
    • Follow-up care for the rest of your life

    Every insurance policy is different. Be sure to ask questions about what medical costs may not be covered by insurance.

    Some transplant patients have Medicare. Sometimes Medicare may help living donors who have donation-related complications. For more information, contact Medicare at 1-800-MEDICARE or at medicare.gov.

    Think about your health insurance situation

    Some transplant hospitals require living donors to have health insurance.

    Most living donors do not have problems with insurance because of donating. After you donate, an insurance company may consider you to have a pre-existing condition. If that happens, it is possible that:

    • It could be harder to get new health, disability, life, or long-term care insurance.
    • It could be harder to increase your life insurance coverage.
    • Your premiums might be higher than they would be without a pre-existing condition.

    Federal law may protect living donors from problems with health insurance. Talk with a social worker at the transplant hospital about risks and ways to protect yourself.

    Check with your employer about other benefits that may help you

    If you are employed, talk with your employer about other benefits that could be helpful. These include:

    • Vacation time
    • Disability pay
    • Sick time
    • Leave of absence

    Talk with your transplant hospital staff if you need help with non-medical costs, such as travel and lodging.

    You may be able to get help with costs for travel expenses, lost wages, and dependent care during testing or surgery. The National Living Donor Assistance Center (NLDAC) helps some donors with these kinds of expenses based on eligibility. Contact the NLDAC toll-free at 1-888-870-5002 or go to livingdonorassistance.org for more information.

    A transplant recipient, family members, a transplant hospital, or charities also may be able to help you with certain non-medical expenses.

    Ask your transplant hospital social worker to explain what kind of help you can accept. It is illegal to give or take money or anything else of value, such as a gift or a vacation, in exchange for donating an organ.

    Can I get information about living donors?

    The OPTN collects data about living donors from transplant hospitals across the country. Looking at data may help as you think about whether or not to donate.

    Talk with your transplant hospital staff about the data to find out what it really means for you.

    Transplant hospitals give the OPTN information about medical problems living organ donors have in the two years after surgery. Serious problems are rare.

    Here are a few examples of living organ donor data:

    To find data about living donation at your transplant hospital or elsewhere, visit the OPTN’s Data Reports page. You can also find more information at the Scientific Registry of Transplant Recipients website.

    Understanding data is not always easy.

    Talk with your transplant hospital about the following living organ donor data:

    • Number of living organ donor surgeries
    • Percent of living donors who had medical problems
    • Percent of living donors who participated in follow-up
    • Living organ donor transplant recipient outcomes

    Where can I get more information?

    You can learn more by contacting the OPTN Patient Services line at (888) 894-6361 or emailing Patient.Services@unos.org.

    The Department of Health and Human Services required the OPTN to develop living donor guidelines and policies in 2006. Find policies that impact living donors on OPTN’s Policies page. You also can submit your feedback on current policy proposals on the Public Comment page.

    Useful websites

    Acronyms and terms

    Colonoscopy – An examination of the colon using a flexible fiber-optic device inserted through the rectum.

    CT scan – A procedure using a computer linked to an X-ray machine to make a series of 3-D images of areas inside the body.

    Electrocardiogram – A test that measures the electrical activity of the heartbeat.

    Immunosuppression medications – A class of drugs that reduce the strength of the body’s immune system, making it less likely to reject a transplanted organ.

    Mammogram – An X-ray picture of the breast.

    MRI scan – Uses a large magnet, radio waves, and a computer to create detailed images of internal organs and structures.

    Prostate – A gland in men that surrounds the urethra, the tube through which urine passes out of the body.

    Types of living organ donors

    Compatible donor – A person whose blood and tissue type and other medical factors match with the recipient.

    Deceased donor – A person who has been declared dead by brain death or cardiac death and whose organs are healthy enough to be used for organ transplant.

    Incompatible donor – A person whose blood type or other medical factors do not match with the recipient. An incompatible donor may still be able to donate through exchange programs (kidney paired donation) or incompatible transplantation programs.

    Living donor – A person who is alive when they donate an organ, usually a kidney or a part of their liver. Living donors are healthy and undergo many medical tests before they are allowed to donate an organ.

    Non-directed donor – A person who wants to donate an organ but does not have a specific recipient in mind. A non-directed donor expresses interest in donating to a transplant hospital. Non-directed donors are sometimes called anonymous donors or altruistic donors.

    Paired donor – A person who donates an organ to someone he or she does not know through a kidney exchange program so that, in turn, another living donor will give a kidney to someone that donor knows. Kidney exchange enables medically compatible donor-recipient combinations.

    Other transplant words

    Blood type – One of four groups (A, B, AB, or O) into which blood is classified.

    Dialysis – A method of filtering the blood that tries to do the job of the kidneys. This includes removing extra fluid from the blood (which would usually leave the body as urine) and balancing chemicals (electrolytes) in the blood.

    Family doctor – The doctor a person sees when he or she does not feel well or for annual medical check-ups. This kind of doctor is also called a primary care physician.

    Independent living donor advocate (ILDA)

    A person who understands the organ donation process and who is not part of the transplant team. This person will:

    • Promote your best interests
    • Check that you have received information about:
      • The informed consent process
      • The tests needed to be a living donor and the risks of these tests
      • The surgery, and the care you will get after the surgery
      • The need to have follow-up care after donation
    • Help you get more information about these topics as needed; the ILDA should not be involved with the transplant candidate

    Informed consent – When a person has information about a test or procedure, understands the information, and then agrees to participate in the test or procedure.

    Living donor team – The transplant hospital staff whose job is to talk with, evaluate, and protect the interests of living donors.

    Medical follow-up – The requirement that living donors have medical tests a minimum of six months, 12 months, and 24 months after donation. The purpose is to make sure the donor is healthy even if the donor feels well. The transplant hospital should talk with the living donor about how and where to do medical follow-up.

    Organ rejection – When a transplant recipient’s body recognizes the transplanted organ as foreign and attacks it. Acute rejection is when a person’s body mounts a sudden attack on the transplanted organ. Chronic rejection is when a person’s body slowly damages the transplanted organ over time. Both can result in organ failure.

    Transplant – Surgery to take an organ from one person’s body and put into another person’s body.

    Transplant candidate – A person who needs an organ transplant and who has been approved by a transplant hospital to have one.

    Transplant hospital – A hospital where experienced surgeons perform organ transplants. Not all hospitals perform organ transplants.

    Transplant recipient – A person who had an organ that was not working and who got an organ from a living or deceased donor.

    Waitlist – Medical information about people who have been approved to get a transplant and who are waiting for an organ from a deceased donor. When an organ becomes available, a computer matches the organ with waitlist candidates based on rules designed to be fair to everyone who is waiting for an organ.

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  • Kidney – OPTN

    Kidney – OPTN

    Kidney

    Effective Jan. 5, 2023, kidney programs are required to assess their waiting lists and correct waiting times for any Black kidney candidates disadvantaged by having their kidney function overestimated due to use of a race-inclusive calculation. Learn more about the board action.

    Patient brochures & FAQs

    Information for patients and families to understand and navigate organ donation and transplantation:

    The kidney

    Functions of the kidney

    The kidneys are a pair of reddish-brown, bean-shaped organs. They are located on either side of the spine just below the diaphragm, behind the liver and stomach.

    The kidneys do a number of things to clean the blood and support overall health. These functions include:

    • Filtering out extra water and waste through making urine
    • Helping control blood pressure and production of red blood cells
    • Helping balance levels of key chemicals (electrolytes) in the blood

    Renal failure happens when the kidneys cannot remove wastes and maintain electrolyte balance. Acute renal failure is when the kidneys cannot make urine. This leads to a buildup of wastes in the body. It can also lead to other problems such as:

    • Trauma
    • Burns
    • Infection
    • Obstruction of the urinary tract

    Treatment depends on the cause and level of kidney disease. It often includes antibiotics and reduction of fluid intake.

    Chronic kidney failure may occur as a result of many systemic disorders. It can cause:

    • Fatigue and sluggishness
    • Less urine output, anemia
    • High blood pressure
    • Congestive heart failure

    As kidney failure worsens, it may be treated through the use of diuretics and/or restricted protein intake. If it cannot be otherwise treated the final options are dialysis and/or transplantation.

    Kidney transplant procedures

    A kidney may be transplanted from a deceased or a living donor.

    In deceased donor transplantation, most commonly one kidney is transplanted. In some cases, depending on the donor’s size or level of kidney function, both kidneys may be transplanted.

    In a living donor transplant, one kidney is transplanted from an individual who:

    • Is in good overall health
    • Has been rigorously tested to ensure he or she can function with the other kidney
    • Has given consent after being informed of the possible risks of living donation

    Reasons for kidney transplants

    Kidney diagnosis categories Kidney diagnoses
    Glomerular Diseases

    Anti-GBM

    Chronic Glomerulonephritis: Unspecified

    Chronic Glomerulosclerosis: Unspecified

    Focal Glomerularsclerosis

    Idio/Post-Inf Crescentic Glomerulonephritis

    IGA Nephropathy

    Hemolytic Uremic Syndrome

    Membranous Glomerulonephritis

    Mesangiocapillary 1 Glomerulonephritis

    Mesangiocapillary 2 Glomerulonephritis

    Systemic Lupus Erythematosus

    Alport’s Syndrome

    Amyloidosis

    Membranous Nephropathy

    Goodpasture’s Syndrome

    Henoch-Schoenlein Purpura

    Sickle Cell Anemia

    Wegener’s Granulomatosis

    Diabetes

    Diabetes: Type I Insulin Dependent/Juvenile Onset

    Diabetes: Type II Insulin Dependent/Adult Onset

    Diabetes: Type I Non-insulin Dependent/Juvenile Onset

    Diabetes: Type II Non-insulin Dependent/Adult Onset

    Polycystic Kidneys

    Polycystic Kidneys

    Hypertensive Nephrosclerosis

    Hypertensive Nephrosclerosis

    Renovascular and Other Vascular Diseases

    Chronic Nephrosclerosis: Unspecified

    Malignant Hypertension

    Polyarteritis

    Progressive Systemic Sclerosis

    Renal Artery Thrombosis

    Scleroderma

    Congenital, Rare Familial, and Metabolic Disorders

    Congenital Obstructive Uropathy

    Cystinosis

    Fabry’s Disease

    Hypoplasia/Dysplasia/Dysgenesis/Agenesis

    Medullary Cystic Disease

    Nephrophthisis

    Prune Belly Syndrome

    Tubular and Interstitial Diseases

    Acquired Obstructive Nephropathy

    Analgesic Nephropathy

    Antibiotic-induced Nephritis

    Cancer Chemotherapy-Induced Nephritis

    Chronic Pyelonephritis/Reflex Nephropathy

    Gout

    Nephritis

    Nephrolithiasis

    Oxalate Nephropathy

    Radiation Nephritis

    Acute Tubular Necrosis

    Cortical Necrosis

    Cyclosporin Nephrotoxicity

    Heroin Nephrotoxicity

    Sarcoidosis

    Urolithiasis

    Neoplasms

    Incidental Carcinoma

    Lymphoma

    Myeloma

    Renal Cell Carcinoma

    Wilms’ Tumor

    Retransplant/Graft Failure

    Retransplant/Graft Failure

    Other

    Other Rheumatoid Arthritis

    Other Familial Nephropathy

     

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  • Leishmaniasis | Yellow Book | CDC

    Leishmaniasis | Yellow Book | CDC

    Infectious agent

    Leishmaniasis is caused by obligate intracellular protozoan parasites; >20 Leishmania species cause leishmaniasis. Leishmaniasis has different forms, including visceral leishmaniasis (VL), cutaneous leishmaniasis (CL), and mucosal leishmaniasis (ML). The presenting form varies by Leishmania species. For example, Leishmania infantum and Leishmania donovani are the most common causes of VL, while ML is most often associated with Viannia species.

    Transmission

    Leishmania parasites are most often transmitted through the bites of infected female phlebotomine sand flies. Transmission risk is greatest from dusk to dawn because sand flies typically feed (i.e., bite) at night and during twilight hours. Vector activity might easily be overlooked because sand flies are small and silent, and their bites can go unnoticed. Travelers with potentially increased risk for leishmaniasis include adventure travelers, bird watchers, construction workers, ecotourists, military personnel, missionaries, Peace Corps volunteers, and people doing research or humanitarian work outdoors at night or twilight. However, even short-term travelers in leishmaniasis-endemic areas have developed leishmaniasis. Immigrants and refugees from endemic areas also might present with leishmaniasis. A less common mode of transmission for both CL and VL is accidental occupational (laboratory) exposures. For VL, uncommon modes include congenital transmission, blood transfusions, organ transplantation, and sharing of contaminated needles.

    Epidemiology

    In 2021, leishmaniasis was reported to be endemic in 99 countries. An estimated 600,000 to 1,000,000 new cases of CL and 50,000 to 90,000 new cases of VL occur annually. The ecologic settings for leishmaniasis transmission range from rainforests to arid regions.

    In the Eastern Hemisphere, CL is found in Africa, particularly the tropical region and North Africa; Asia, particularly Central and Southwest Asia; southern Europe, including southern France, Greece, Italy, Portugal, Spain, and the Mediterranean islands; and some countries of the Middle East. Leishmaniasis from these areas is often referred to as “Old World” leishmaniasis. In the Western Hemisphere, CL is found in parts of Mexico, all countries of Central America, and most of South America except Chile and Uruguay. Endemic transmission in the United States has been identified in Texas, especially among people living in areas bordering northeastern Mexico, and possibly in Arizona and Oklahoma. Leishmaniasis from these areas is often referred to as “New World” leishmaniasis. Endemic transmission of CL is not found in Canada. Visit the World Health Organization (WHO) cutaneous leishmaniasis endemicity map for more information.

    GeoSentinel Surveillance from 1997–2017 indicated that among patients with laboratory confirmed CL examined at specialized travel or tropical medicine clinics on 6 continents, including North America, common source countries for travel-associated CL were in the Amazon Basin (Brazil, Bolivia, Colombia, Ecuador, and Peru); Costa Rica; El Salvador; and Israel. Among immigrants, common source countries were Afghanistan and Syria. Cases of CL in U.S. service personnel have reflected military activities (e.g., in Afghanistan and Iraq). CL is usually more common in rural than urban areas but is found in some peri-urban and urban areas (e.g., in Kabul, Afghanistan).

    Although ML is uncommon, it has occurred in travelers and expatriates, including in people whose cases of CL were not treated or were treated inadequately. ML is most commonly associated with the Viannia subgenus found in Central and South America, particularly in infections acquired in Bolivia, Brazil, or Peru. However, ML has been documented on rare occasions with species of Leishmania found in various countries of the Eastern Hemisphere.

    VL is usually more common in rural than urban areas, but it is found in some peri-urban areas (e.g., in northeastern Brazil). In the Eastern Hemisphere, VL is found in Africa, particularly East Africa; parts of Asia, particularly the Indian subcontinent and Central and Southwest Asia; southern Europe; and the Middle East. In the Western Hemisphere, most cases occur in Brazil; some cases occur in scattered foci elsewhere in Latin America. Overall, VL is found in focal areas of >70 countries. In 2021, 97% of reported VL cases were from 11 countries: Brazil, Eritrea, Ethiopia, India, Kenya, Nepal, Somalia, South Sudan, Sudan, Uganda, and Yemen. Visit the 2020 WHO visceral leishmaniasis endemicity map for more information.

    The geographic distribution of VL cases evaluated in the United States and other countries reflects travel and immigration patterns. Although uncommon in most U.S. travelers, expatriates, and military personnel, VL has occurred in such short-term and long-term travelers returning from travel or deployment to endemic regions in European countries (e.g., France, Greece, Italy, Macedonia, and Spain) and the Middle East.

    Clinical presentation

    Clinical presentation depends on the form of leishmaniasis (i.e., CL, ML, or VL). Not all people with Leishmania infection develop symptoms.

    Cutaneous leishmaniasis

    CL can present with a broad variety of dermatologic manifestations ranging from small and localized skin lesions to large nodules or plaques covering multiple body surfaces. The clinical spectrum can mimic other skin conditions (e.g., leprosy, squamous cell cancer, fungal or other skin infections).

    Lesions typically develop on exposed areas of the skin within several weeks after infection. However, lesions may first appear months or years later, often in the context of trauma (e.g., skin wounds, surgery). The lesions can change in appearance and size over time, typically progressing from small, erythematous papules or nodular plaques to open sores with raised borders and central craters (i.e., ulcers), which can be covered with crusts or scales. Lesions usually are painless but can be painful if superinfected with bacteria. Satellite lesions, regional lymphadenopathy, and nodular lymphangitis can occur. Even without treatment, most lesions eventually heal; they can last for months or years, however, and typically result in scarring.

    Mucosal leishmaniasis

    Some Leishmania species are a potential concern because parasites might spread from the skin to the mucosal surfaces of the nose or mouth and cause lesions in these areas. Most often, these are Leishmania Viannia species in Central and South America. ML frequently appears years after the original skin lesions have healed but may also occur along with the skin lesions or as the initial presentation of a subclinical cutaneous infection. The initial clinical manifestations typically involve the nose, with bleeding, chronic stuffiness, and inflamed mucosa or lesions; less often the mouth or larynx are involved, manifesting as a brassy cough or hoarseness. In advanced cases, ulcerative destruction of the mouth, nose, larynx, and pharynx (e.g., perforation of the nasal septum, laryngeal damage, or tracheal damage) can occur.

    Visceral leishmaniasis

    Among symptomatic people, the incubation period typically ranges from weeks to months. Illness onset can be abrupt or gradual. Stereotypical clinical manifestations of VL include fever, hepatosplenomegaly (especially splenomegaly), night sweats, and weight loss; lymphadenopathy can occur. Laboratory findings characteristic of VL include pancytopenia (anemia, leukopenia, thrombocytopenia), high total protein, low albumin, and hypergammaglobulinemia. If untreated, severe (advanced) cases of VL typically are fatal. Latent infection can clinically manifest years to decades after exposure in people who become immunocompromised through HIV infection, biologic immunomodulatory therapy, or immunosuppressive therapy.

    Diagnosis

    CDC can assist with the diagnostic evaluation of suspected leishmaniasis, including parasite species identification. For consultative services, contact CDC Parasitic Diseases Inquiries (404-718-4745; parasites@cdc.gov). CDC’s Parasitology Lab (404-718-4175; parasiteslab@cdc.gov) can provide helpful information regarding collection, storage, and shipping of samples for Leishmania diagnostic testing.

    Cutaneous and mucosal leishmaniasis

    Consider CL in people with chronic, non-healing skin lesions who have been in areas where leishmaniasis is found. Clinical signs and symptoms are not sufficiently specific to differentiate CL from other conditions. Obtain an explicit travel history, including, if possible, questioning fellow travelers about similar lesions. Obtain information about duration and progression of symptoms, whether the lesions are painful, prior treatment, and current medications (e.g., immunosuppressive agents); photographs are helpful to assess lesions over time. Conduct a careful physical examination, including evaluation of skin, lymph nodes, and mucosal surfaces.

    Any patient with CL caused by a species with risk of causing ML, primarily related to the Viannia subgenus species (Leishmania (V.) braziliensis, Leishmania (V.) guyanensis, and Leishmania (V.) panamensis), but also rarely related to some additional New World and Old World species, should undergo a careful examination of mucosal surfaces, including the vocal cords and oronasal pharynx, along with biopsy of any abnormal appearing tissue, to evaluate for ML. This mucosal exam should occur regardless of other symptoms. Referral to a specialist able to conduct an endoscopic laryngeal examination is warranted if ML is suspected.

    Laboratory confirmation of the diagnosis is achieved by detecting Leishmania parasites or DNA in infected tissue through light-microscopic examination of stained specimens, culture techniques, or molecular methods (e.g., polymerase chain reaction); conducting multiple tests on the specimen improves diagnostic yield. Because different Leishmania species have different management implications, species identification through molecular testing is important, particularly if >1 species is endemic to areas where the patient traveled. Serologic testing generally is not useful for CL because the assays are insensitive and cannot distinguish between active and past infection.

    Visceral leishmaniasis

    Consider VL in the differential diagnosis of people with a relevant travel history, even in the distant past, and a persistent, unexplained febrile illness, especially if accompanied by other suggestive manifestations (e.g., pancytopenia or splenomegaly). Hemophagocytic lymphohistiocytosis could be a complication and should prompt healthcare professionals to consider VL in patients with the appropriate travel history.

    Laboratory confirmation of the diagnosis is achieved by detecting Leishmania parasites or DNA in infected blood, bone marrow, liver, or lymph nodes through light-microscopic examination of stained specimens, molecular methods, or tissue culture techniques. Serologic testing can provide supportive evidence for the diagnosis.

    Treatment

    Treatment of leishmaniasis can be complex; healthcare professionals can receive expert consultation from CDC staff about treatment approaches (see the “Diagnosis” section of this chapter for contact information).

    Cutaneous and mucosal leishmaniasis

    The primary goal of CL and ML treatment is to prevent morbidity. Decisions about whether and how to treat CL, including whether to use a systemic (oral or parenteral) medication rather than a local or topical approach, should be individualized. All cases of ML should be treated with systemic therapy. The response to a particular regimen can vary not only among Leishmania species but also for the same species in different geographic regions. Expert consultation is advised for treatment of any patient with CL, ML, or VL.

    Some patients with CL may be candidates for local therapy depending on the risk of mucosal dissemination, patient characteristics, and the characteristics, number, and location of the lesion(s). Local therapy can include cryotherapy, heat therapy, topical paromomycin, or intralesional pentavalent antimonials. In the United States, topical paromomycin may be available through compounding pharmacies and its use is considered off-label. The oral agent miltefosine is approved by the U.S. Food and Drug Administration (FDA) to treat CL caused by 3 Western Hemisphere species of the Viannia subgenus: Leishmania (V.) braziliensis, L. (V.) guyanensis, and L. (V.) panamensis, as well as for ML caused by L. (V.) braziliensis in adults and adolescents ≥12 years old who weigh ≥30 kg and are not pregnant or breastfeeding during therapy or for 5 months after the last dose of miltefosine. Various parenteral options, including liposomal amphotericin B, are commercially available, although not FDA-approved to treat CL or ML. The pentavalent antimonial compound meglumine antimoniate (Glucantime) is not FDA-approved but can be acquired through an Investigational New Drug (IND) application. Glucantime can be administered intravenously, intramuscularly, or intralesionally; the route of administration should be individualized, and expert consultation is advised. Pentostam is no longer available, but sodium stibogluconate may be available in some countries outside of the United States.

    Visceral leishmaniasis

    All symptomatic patients with VL should be treated. Refer patients with VL to an infectious disease or tropical medicine specialist who can help direct care and provide individualized treatment. Risk for relapse and treatment failure is greater in immunocompromised VL patients compared with immunocompetent VL patients, particularly those living with HIV. Therefore, treatment of VL can differ between immunocompromised and immunocompetent VL patients. Relapse and treatment failure rarely might occur in immunocompetent patients.

    Liposomal amphotericin B (AmBisome) is approved by the FDA to treat VL and is generally the drug of choice for U.S. patients. The oral agent miltefosine is approved by the FDA to treat VL in patients infected with L. donovani who are ≥12 years old, who weigh ≥30 kg, and who are not pregnant or breastfeeding during therapy or for 5 months after treatment. Pentavalent antimonials (e.g., meglumine antimoniate [Glucantime], sodium stibogluconate) are used in endemic areas, except for India, where developing resistance is a concern. See the “Cutaneous and Mucosal Leishmaniasis” section above for further information on the availability of pentavalent antimonials.

    Prevention

    No vaccines or drugs to prevent infection are available. Travelers can reduce the risk of CL by using personal protective measures to avoid sand fly bites (see Mosquitoes, Ticks, and Other Arthropods chapter). Advise travelers to avoid outdoor activities, especially from dusk to dawn when sand flies are the most active; wear protective clothing and apply insect repellent to exposed skin and under the edges of clothing (e.g., shirt sleeves, pant legs) according to the manufacturer’s instructions; and sleep in air-conditioned or well-screened areas. Spraying sleeping quarters with insecticide might provide some protection, and fans or ventilators might inhibit the movement of sand flies, which are weak fliers.

    Sand flies are small (approximately 2–3 mm,

    Acknowledgments

    The following authors contributed to the previous version of this chapter: Paul Cantey and Mary Kamb.

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  • Recurrent Cancer – NCI

    Recurrent Cancer – NCI

    When cancer comes back after treatment, doctors call it a recurrence or recurrent cancer. Finding out that cancer has come back can cause feelings of shock, anger, sadness, and fear. But you have something now that you didn’t have before—experience.

    You’re in Control

    Maybe in the back of your mind, you feared that your cancer might return. Now you might be thinking, “How can this be happening to me again? Haven’t I been through enough?” But you’ve lived through cancer once. You know a lot about what to expect and how to prepare. You know the health care team and people at the hospital. 

    Remember that treatments may have improved since your first cancer. New drugs or methods may help with your treatment or in managing side effects. In some cases, improved treatments have helped turn cancer into a chronic disease that people can manage and live with for many years.

    Cancer that returns can affect all parts of your life. You may feel weak and no longer in control. But you don’t have to feel that way. You can take part in your care and in making decisions. You can also talk with your health care team and loved ones as you decide about your care. This may help you feel a sense of control and well-being.

    Why Cancer Comes Back

    Recurrent cancer starts with cancer cells that the first treatment didn’t fully remove or destroy. This doesn’t mean that the treatment you received was wrong. It just means that a small number of cancer cells survived the treatment and were too small to show up in follow-up tests. Over time, these cells grew into tumors or cancer that your doctor can now detect.

    Sometimes, a new type of cancer will occur in people who have a history of cancer. When this happens, the new cancer is known as a second primary cancer. Second primary cancer is different from recurrent cancer.

    Types of Recurrent Cancer

    Doctors describe recurrent cancer by where it develops and how far it has spread. The different types of recurrence are:

    • Local recurrence means that the cancer is in the same place as the original cancer or very close to it.
    • Regional recurrence means that the tumor has grown into lymph nodes or tissues near the original cancer.
    • Distant recurrence means the cancer has spread to organs or tissues far from the original cancer. When cancer spreads to a distant place in the body, it is called metastasis or metastatic cancer. When cancer spreads, it is still the same type of cancer. For example, if you had colon cancer, it may come back in your liver. But, the cancer is still called colon cancer.

    Staging Recurrent Cancer

    To figure out the type of recurrence you have, you will have many of the same tests you had when your cancer was first diagnosed, such as lab tests and imaging procedures. These tests help determine where the cancer has returned in your body, if it has spread, and how far. Your doctor may refer to this new assessment of your cancer as “restaging.”

    After these tests, the doctor may assign a new stage to the cancer. An “r” will be added to the beginning of the new stage to reflect the restaging. The original stage at diagnosis does not change.

    See our information on Diagnosis to learn more about the tests that may be used to assess recurrent cancer.

    Treatment for Recurrent Cancer

    The steps you go through for treatment most likely will be the same as when you first had cancer, even if your treatment changes. Many people have a treatment team of health providers who work together to help them. This team may include doctors, nurses, social workers, dietitians, or other specialists. 

    There are many treatment choices for recurrent cancer. You may have the same or a different treatment than you did for the first cancer. This will depend partly on the type of cancer and the treatment you had before. It will also depend on where the cancer has recurred, whether it has spread, and how your health is now.

    Chemotherapy, surgery, radiation, biological therapies, or a combination of treatments may be options for you. Your doctor may also suggest a clinical trial that you may benefit from. It’s important to ask your doctor questions about all your treatment choices. You will want to know all the risks and benefits of treatment. And if you choose not to go through treatment again, palliative care can provide comfort care for you. 

    To learn about the treatments that may be used to treat your recurrent cancer, find your type of cancer among the PDQ® cancer treatment summaries for adult and childhood cancers.

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  • Treating Active Tuberculosis Disease | Tuberculosis (TB)

    Treating Active Tuberculosis Disease | Tuberculosis (TB)

    Treatment overview

    TB germs become active if the immune system can’t stop them from growing. When TB germs are active (multiplying in your body), this is called active TB disease. People with active TB disease feel sick. They may also be able to spread the germs to people they spend time with every day. Without treatment, active TB disease can be fatal.

    If you have active TB disease, you can be treated with medicine. You will need to take several different TB medicines. This is because there are many TB germs to be killed. Taking several TB medicines will do a better job of killing all the TB germs and preventing them from becoming resistant to the medicines.

    TB germs are strong, and it can take a long time for them to die. Even if you start to feel better, it is important to take and finish all TB medicines exactly as your health care provider recommends:

    • If you stop taking the medicines too soon, you can become sick again;
    • if you do not take the medicines correctly, the TB germs that are still alive may become resistant to those medicines. TB that is resistant to medicines is harder to treat.

    Treatment options

    There are several safe and effective treatment plans recommended in the United States for active TB disease. A treatment plan (also called treatment regimen) for active TB disease is a schedule to take TB medicines to kill all the TB germs. Your treatment plan for active TB disease will include:

    • The types of TB medicines to take,
    • How much TB medicine to take,
    • How often to take the TB medicines,
    • How long to take the medicines,
    • How to monitor yourself for any side effects of your TB medicine, and
    • The health care provider(s) who will support you through the treatment process.

    You and your health care provider will discuss which treatment plan is best for you depending on your medical history and any medications you are currently taking. Your health care provider will make sure the medications can kill the TB germs in your body.

    Treatment for active TB disease can take four, six, or nine months depending on the treatment plan.

    The treatment plans for active TB disease use different combinations of medicines that may include:

    • Ethambutol
    • Isoniazid
    • Moxifloxacin
    • Rifampin
    • Rifapentine
    • Pyrazinamide

    Before starting treatment

    Tell your health care provider about all medicines you are taking.

    • Some medicines can interact with the TB medicines and cause a possible side effect or reaction after taking medicine.
    • Some oral contraceptives (birth control pills) may not work as well when you take them with medicines for active TB disease.
      • TB medicines can sometimes interfere with birth control pills and possibly make the birth control pills less effective.
      • If you are taking birth control pills, talk with your health care provider before beginning any new medicines.

    Tell your health care provider if you are or think you may be pregnant, or are breastfeeding before you start any TB medicines.

    Your health care provider can recommend a treatment plan.

    Drinking alcoholic beverages while taking medicines for TB can be dangerous and may hurt your liver.

    Alcoholic beverages include wine, beer, or liquor. Ask your health care provider about things to avoid while taking medicines for active TB disease.

    Side effects

    Most people can take their TB medicines without any problems. However, like all medicines, the medicine you take for active TB disease can have side effects.

    People react differently to medicines. Tell your health care provider about anything you think is wrong.

    Some side effects are minor.

    For example, any TB medicine can cause a skin rash. Other TB medicines may cause an upset stomach or nausea. Taking your TB medicine with food can help your body absorb the medicine better.

    The rifampin or rifapentine medicines may cause some body fluids, to turn an orange color, such as:

    • Urine (pee),
    • Saliva,
    • Tears,
    • Sweat, and
    • Breast milk.

    This is normal and harmless. The color may fade over time. Your health care provider may tell you not to wear soft contact lenses because they may get permanently stained.

    If you have any of these side effects, you can continue taking your medicine.

    Other side effects are more serious.

    If you have a serious side effect, call your health care provider immediately. You may be told to stop taking your medicines or to return to the clinic for tests. Serious side effects include:

    • Liver injury
      • Abdominal pain
      • Nausea and vomiting
      • Skin and eyes turning yellow (also called jaundice)
    • Dizziness or lightheadedness
    • Loss of appetite
    • Flu-like symptoms
    • Tingling or numbness in your hands or feet

    If you are taking isoniazid, you may have tingling or numbness in your hands and feet. Your health care provider may add vitamin B6 to your treatment plan to prevent this.

    Special considerations

    Children

    Treatment for active TB disease in children may take four months, six months, or longer. Health care providers will consider a child’s age, weight, and other factors when prescribing treatment.

    People with HIV

    There are several TB treatment options for people with HIV and active TB disease. Your health care provider will help make sure your TB medicines do not interfere with your HIV medicines.

    Pregnancy

    If you are diagnosed with active TB disease during pregnancy, you should start treatment right away. Your health care provider will choose TB medicines that are recommended for use during pregnancy. Although the TB medicines used in recommended treatment plans cross the placenta, these medicines are not known to have harmful effects on the baby.

    Your health care provider will monitor you and your baby during treatment for active TB disease. Tell your health care provider if you have any problems taking your medicine.

    Completing treatment

    Treating active TB disease takes several months. Your health care provider will work with you to make sure you can complete your treatment.

    Take all TB medicines exactly as prescribed.

    Do not miss any doses and do not stop treatment early. It can be very dangerous to stop taking your medicines or not to take all your medicines regularly.

    It takes a long time for the medicines to kill all the TB germs. You will probably start feeling well after only a few weeks of treatment, but beware! The TB germs are still alive in your body, even if you feel better. You must continue to take your medicines until all the TB germs are dead, even though you may feel better and have no more symptoms of TB disease.

    If you become infectious again, you could give TB germs to your family, friends, or anyone else who spends time with you.

    You may take your medicine through directly observed therapy (DOT), on your own, or a combination of both.

    Directly observed therapy (DOT) is the best way to remember to take your TB medicines.

    Through DOT, you will meet with a health care worker every day or several times a week. These meetings may be in-person or virtual (through a smartphone, tablet, or computer). The health care worker will watch you take your TB medicines and make sure that the TB medicines are working as they should.

    If you take TB medicines on your own

    If you take TB medicines on your own, here are tips to help you to remember to take your TB medicines:

    • Take your pills at the same time every day—for example, you can take them before eating breakfast, during a regular coffee break, or after brushing your teeth.
    • Set an alarm for the time you need to take your medicine.
    • Write yourself a note as a reminder to take your medicine. Put it in a place where you can see it, like on your bathroom mirror or on your refrigerator.
    • Ask a family member or a friend to remind you to take your pills.
    • Mark off each day on a calendar as you take your medicine.
    • Put your pills in a weekly pill dispenser that you keep by your bed or in your purse or pocket.
    • Use a medicine tracker to organize and manage your pills.

    NOTE: Remember to keep all medicine out of reach of children.

    If you forget to take your pills one day, skip that dose and take the next scheduled dose. Tell your health care provider that you missed a dose. You may also call your health care provider for instructions.

    Talk to your health care provider if you have any questions or concerns about treatment for active TB disease.

    Your health care provider will monitor your treatment.

    Your health care provider will ask you about side effects and perform tests to see how the medicines are working. Depending on your treatment plan, your health care provider may ask for blood, sputum (phlegm), or urine tests while you are on treatment. These tests help show if the TB medicines are working the right way and how your body is handling the medicine. You may also get additional chest x-rays.

    If you have active TB disease and other health problems, like HIV infection or diabetes, you may need to have blood, sputum (phlegm), or urine tests before and after treatment.

    Be sure to keep your clinic appointments and talk to your health care provider if you have any problems with your medicines.

    Keep a record of your treatment.

    Even after you finish taking all of your medicine for active TB disease, you may still have a positive test result on future TB blood tests or TB skin tests.

    Ask your health care provider for a written record that you have finished treatment for active TB disease. This will be helpful if you are asked to have another TB test in the future.

    Most healthy people will not need to be treated for active TB disease ever again.

    However, the treatment you completed only kills the TB germs in your body now. If you are around someone with active TB disease, there is a chance that you can get new TB germs in your body.

    Getting support

    It is very important to take and finish all TB medicines exactly as prescribed by your health care provider. Talk to your health care provider if you have any questions or concerns about treatment for active TB disease. Tell your health care provider if you:

    • Have side effects from the TB medicine.
    • Need help taking your TB medicine.
      • This includes food, clean water, or transportation.

    If you need additional assistance or support in completing treatment for active TB disease

    Talk to your health care provider.

    The state or local TB program may be able to provide support or have resources to help you.

    Ask your family or friends for support.

    If you need support while completing treatment for active TB disease, ask your family or friends. A family member or friend can help you to remember to take your TB medicines. It can be hard taking TB medicine for several months. A family member or friend can provide emotional support and may be able to help you get resources such as food and groceries if you have to stay away from others while being treated for active TB disease.

    Connect with other TB survivors.

    We are TB, and Somos TB for Spanish-speakers, is a community of TB survivors, people being treated for TB, and their family members, committed to the common goal of eliminating TB. The group provides comprehensive peer support for current TB patients and TB clinics.

    You can learn about people’s experiences of being diagnosed and treated for active TB disease through CDC’s Tuberculosis Personal Stories.

    Resources

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  • Tuberculosis in Pregnancy | Tuberculosis (TB)

    Tuberculosis in Pregnancy | Tuberculosis (TB)

    Overview

    Tuberculosis (TB) is caused by a bacterium (or germ) called Mycobacterium tuberculosis.

    TB usually affects the lungs. TB can also affect other parts of the body, such as the brain, the kidneys, or the spine. TB can also affect multiple parts of the body at the same time. For example, TB can affect both the lungs and lymph nodes.

    Not everyone infected with TB germs becomes sick. As a result, two TB-related conditions exist: inactive TB (or latent TB infection) and active TB disease.

    Inactive TB

    TB germs can live in the body without making you sick. This is called inactive TB. People with inactive TB are infected with TB germs, but they do not have active TB disease.
    They do not feel sick, do not have symptoms of TB disease, and cannot spread TB to others.

    Active TB disease

    TB germs become active if the immune system can’t stop them from growing. When TB germs are active (multiplying in your body), this is called active TB disease. People with active TB disease feel sick. TB germs can spread to people around them, including their baby, before or after birth. Tell your health care provider if you have symptoms of TB disease.

    Pregnant women diagnosed with active TB disease can take medicine to treat the disease.

    Risk factors

    Pregnant women who have recently spent time with someone with active TB disease, or who have a weaker immune system because of certain medications or health conditions such as diabetes, cancer, or HIV should be tested for TB infection, as they may have a higher risk of developing active TB disease once infected.

    Babies born to women with untreated active TB disease may have a lower birth weight than babies born to women without active TB disease. In rare cases, a baby may be born with TB. Babies may also be at risk for TB through close contact with a person with active TB disease.

    Pregnant women may have other risk factors for TB, including:

    Talk to your health care provider about your TB risk.

    Testing and diagnosis

    Anyone, including pregnant women, with a positive test result for TB infection (TB blood test or TB skin test), symptoms of TB disease, or who have spent time with a person with active TB disease should receive a medical evaluation for TB.

    A medical evaluation for TB disease includes:

    1. Medical history
    2. Physical examination
    3. Test for TB infection (TB blood test or TB skin test)
    4. Chest x-ray
    5. Laboratory tests to see if TB germs are present (sputum smear and culture)
    6. Laboratory tests for drug resistance

    Testing for TB infection

    There are two types of tests for TB infection: the TB blood test and the TB skin test.

    The TB blood test is safe to use during pregnancy but has not been fully evaluated for diagnosing TB infection in pregnant women.

    The TB skin test is both safe and reliable to use throughout pregnancy.

    TB Blood Test

    TB blood tests (also called interferon-gamma release assays or IGRAs) use a blood sample to find out if someone is infected with TB germs. The tests measure how the immune system reacts when a small amount of blood is mixed with TB proteins.

    Tell your health care provider if you have received the TB vaccine (BCG vaccine). The TB vaccine can cause a false positive TB skin test reaction. Unlike the TB skin test, TB blood tests are not affected by the TB vaccine.

    TB Skin Test

    For the TB skin test, a health care provider uses a small needle to put some testing material under the skin. You will need to return to your health care provider in two to three days to see if there is a reaction.

    Understanding TB Blood Test or TB Skin Test Results

    A positive test result for TB infection means you have TB germs in your body. A health care provider will do other tests to determine if you have inactive TB or active TB disease. These tests may include a chest x-ray, and a test of the sputum (phlegm) you cough up.

    A negative test result for TB infection means inactive TB or active TB disease is unlikely, but your health care provider may do more tests, especially if:

    • You have symptoms of active TB disease, like coughing, chest pain, fever, weight loss, or tiredness.
    • You have HIV.
    • You were recently exposed to TB germs.

    Chest x-ray

    Health care providers may use a chest x-ray to look for signs of TB disease of the lungs.

    Laboratory tests

    Your health care provider may collect samples from you. A common sample is a sputum (phlegm) specimen to test for TB of the lungs. Your health care provider may also collect a urine sample, take tissue samples, or do other tests. These tests can find TB germs that may be outside your lungs.

    The laboratory will do tests, such as a smear test and a culture test to see whether there are TB germs in your sample. If the laboratory finds TB germs in your sample, they will also do tests to see which TB medicines can kill the TB germs.

    Diagnosis

    Inactive TB

    If you have a positive TB blood test or TB skin test, but your health care provider does not find evidence of TB disease after a medical evaluation, you may be diagnosed with inactive TB.

    Active TB Disease

    If you have symptoms of TB disease, a positive TB blood test or TB skin test and your health care provider finds evidence of active TB disease during the medical evaluation, you may be diagnosed with active TB disease.

    Treatment and recovery

    Your health care provider will choose TB medicines that are recommended to use during pregnancy and monitor you and your baby during treatment for inactive TB or active TB disease. Tell your health care provider if you have any problems taking your medicine.

    Inactive TB treatment during pregnancy

    In most cases, women who are diagnosed with inactive TB during pregnancy can delay treatment for inactive TB until 2-3 months post-partum. If you have a high risk of developing TB disease once infected, your health care provider may recommend starting treatment for inactive TB right away.

    Active TB disease treatment during pregnancy

    Women who are diagnosed with active TB disease during pregnancy should start treatment right away. Although the TB medicines used in recommended treatment regimens cross the placenta, these medicines are not known to have harmful effects on the baby.

    Breastfeeding

    Rifampin, one of the medicines that health care providers can use to treat TB, can cause orange discoloration of body fluids, including breast milk. This is expected and harmless.

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  • Tuberculosis Clinical Care and Treatment During Pregnancy | Tuberculosis (TB)

    Tuberculosis Clinical Care and Treatment During Pregnancy | Tuberculosis (TB)

    Effect on pregnancy outcomes

    Untreated TB disease poses a greater risk to the pregnant woman and fetus than does its treatment. Although the TB drugs used in recommended treatment plans for TB disease cross the placenta, these drugs are not known to have harmful effects on the unborn fetus.

    If the pregnant woman is not treated for TB disease, the infant may be born with a low birth weight. In rare circumstances, the infant may be born with TB disease. TB disease in babies is often severe and may be deadly.

    Helping patients stay well during pregnancy

    Testing for TB infection during pregnancy

    Health care providers should test pregnant women at higher risk of developing TB disease. Generally, pregnant women at higher risk for TB disease (once infected) fall into two categories:

    • Those who are taking certain medications or have health conditions such as diabetes, cancer, or HIV that may weaken their immune system; and
    • Those who have been recently infected with TB bacteria.

    Types of TB tests

    TB blood tests and the TB skin test are safe to use during pregnancy. TB experts are available to help interpret the TB blood test or TB skin test results.

    If a TB blood test or TB skin test result is positive, other tests such as chest radiography may be needed to evaluate for TB disease.

    Treatment options

    Latent TB infection

    Most pregnant women can delay treatment for latent TB infection until two-three months post-partum. It may be reasonable to delay treatment until after delivery to avoid the risk of liver toxicity as an adverse effect of treatment for latent TB infection, which is higher during pregnancy.

    However, pregnant women who are at higher risk for developing TB disease should not delay treatment, even during the first trimester. This includes pregnant women:

    • Who have weakened immune systems, such as a person with HIV and a low CD4 count
    • Who recently spent time with someone with infectious TB disease

    Treatment regimens for latent TB infection

    There are several treatment regimens recommended to treat latent TB infection during pregnancy. Health care providers can consult TB experts for additional information.

    • Four-month daily regimen of rifampin (also called 4R)
    • Three-month daily regimen of isoniazid and rifampin (also called 3HR)
    • Six- or nine-month daily regimen of isoniazid (also called 6H or 9H), with pyridoxine (vitamin B6) supplementation

    Pregnant women taking isoniazid should take 25–50 mg/day of pyridoxine (vitamin B6) to reduce possible adverse effects of isoniazid. Women taking isoniazid in the post-partum period (within three months of delivery) should have blood tests checked for liver function before starting treatment.

    Pregnant women or women expecting to become pregnant during treatment should not take the three-month weekly isoniazid and rifapentine (3HP) regimen. Its safety during pregnancy has not been studied.

    Treatment guidelines for latent TB infection

    TB disease

    Women who are diagnosed with TB disease during pregnancy should start treatment right away. Health care providers should:

    • Choose TB drugs that are recommended for use during pregnancy,
    • Monitor the pregnant women and fetus during treatment, and
    • Ask the patient if they are having any problems taking the medicine.

    Treatment regimens for TB disease

    Health care providers should evaluate the risks and benefits of prescribing pyrazinamide as part of a treatment regimen on a case-by-case basis and allow patients to make an informed and educated decision.

    For pregnant women with TB disease and HIV, extrapulmonary, or severe TB disease, it may be more beneficial to include pyrazinamide in the treatment regimen. Pyrazinamide is used routinely as part of TB treatment in pregnancy in many other countries.

    If pyrazinamide is excluded from the treatment regimen, a minimum of nine months of isonaizid, rifampin, and ethambutol is used for most pregnant women with drug-susceptible TB disease. It includes:

    • Isoniazid, rifampin, and ethambutol daily for two months, followed by
    • Isoniazid and rifampin daily, or twice weekly for seven months.

    Health care providers can contact their state or local TB program or the TB Centers of Excellence for expert consultation.

    Treatment guidelines for TB disease

    Pregnant women with HIV and TB disease

    Treatment of TB disease for pregnant women with HIV should be the same as for other people with HIV but with particular attention to drug-drug interactions.

    Health care providers can contact their state or local TB program or the TB Centers of Excellence for expert consultation.

    Health care providers may also consult Guidelines for the Prevention and Treatment of Opportunistic Infections in Adults and Adolescents With HIV: Mycobacterium tuberculosis Infection and Disease.

    Contraindications

    Antituberculosis drugs contraindicated during pregnancy include:

    • Streptomycin
    • Amikacin
    • Capreomycin

    Fluoroquinolones

    Fluoroquinolones (including moxifloxacin and levofloxacin) are not routinely used for standard treatment of TB disease in pregnancy but may be used for treatment of drug-resistant TB, severe TB disease, or treatment-intolerant TB disease, with discussion about benefits and risks.

    Drug-resistant TB disease

    There are known and unknown risks of medications for drug-resistant TB disease. Pregnant women diagnosed with drug-resistant TB disease should receive counseling about both the benefits of TB treatment and the possible risk to the pregnancy.

    Treatment guidelines for drug-resistant TB disease

    Potential impacts for breastfeeding

    Women taking first-line antituberculosis drugs may continue to breastfeed their newborn. The concentrations of these drugs in breast milk are too small to produce toxicity in the nursing newborn. For the same reason, TB drugs in breast milk are not an effective treatment for TB disease or latent TB infection in a nursing newborn.

    Rifampin can cause orange discoloration of body fluids, including breast milk This discoloration is normal, harmless, and goes away after stopping rifampin.

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  • Can Asthma Be Predicted? Early Signs, Risk Factors & Diagnosis in Children

    Can Asthma Be Predicted? Early Signs, Risk Factors & Diagnosis in Children


    By: Clinton Dunn, MD, FAAP & Addie Dodson, MD, FAAP

    One in every 10 kids in the United States has
    asthma, a breathing condition that can affect nearly every part of their lives. Asthma is one of the main reasons kids miss school. It’s also a leading cause of childhood hospitalization.

    Research shows that a family history of asthma is a risk that your child may develop it too. Early allergy symptoms are another possible red flag. Exposure to
    tobacco or vape smoke,
    air pollution, high temperatures (or a combination of these) also can elevate asthma risks in kids.

    Learn more about key risk factors, signs to watch for, tools that can gauge a child’s asthma risk and how early diagnosis makes a difference.

    Is it a cold—or an early sign of asthma?

    Babies and toddlers are especially vulnerable to
    colds and other respiratory infections such as rhino/enterovirus or
    RSV. In a child’s early years, doctors might notice
    wheezing—a high-pitched whistling sound when a child breathes.

    Respiratory infections with wheezing is one sign that your child might be at higher risk for asthma later. Their pediatrician will look for other signs too. They may use tools such as the Asthma Predictive Index (API) and the Pediatric Asthma Risk Score (PARS).

    Tools that weigh your child’s asthma risk factors

    Asthma Predictive Index (API)

    The API is based on a study of 1,000 children diagnosed with asthma before starting school (5 years old or earlier). The index suggests that children
    3 years old or younger who have had
    4 or more episodes of wheezing are likely to develop asthma if:

    ONE of these factors is present:

    • At least one birth parent with asthma


    • Eczema, a condition that causes dry, itchy skin that make look reddish or purplish, depending on skin tone

    OR if TWO or more of these factors are present:


    • Food allergies signaled by immediate symptoms after eating foods such as hives, swelling or vomiting

    • High levels of blood eosinophils, a type of white blood cell often seen in people with allergies or eczema

    • Wheezing that occurs when they are NOT sick with a colds or respiratory viruses

    Pediatric Asthma Risk Score (PARS)

    The
    Pediatric Asthma Risk Score (PARS) tool was developed using data from the Cincinnati Childhood Allergy and Air Pollution Study. Each factor gets a point of 2 if present. PARS predicts the odds that a child will develop asthma at age 7 or later based on these 6 risk factors:


    • Parents with asthma: Has either of the child’s biological parents ever been diagnosed or treated for asthma?


    • Eczema: Was the child diagnosed with eczema (atopic dermatitis) between birth and age 3 years?


    • Early wheezing: From birth to age 3 years, did the child ever
      wheeze?


    • Wheezing when healthy: Did the child ever wheeze when not sick?


    • Ancestry: Is the child or either of his/her parents of black/African ancestry?


    • Allergies: Has the child ever had allergy skin testing (skin prick testing)?

    Why an early diagnosis helps kids cope with asthma

    Children with asthma need regular
    medications to manage their breathing. Without these medicines, they can experience
    dangerous asthma flare-ups that may send them to the ER—and even threaten their life.

    An early diagnosis can help your child’s asthma care team prescribe the medicines they will need, along with other lifestyle changes that help keep symptoms under control and decrease injury to their lungs. These medications will become part of an
    asthma action plan that spells out exactly what to do when asthma symptoms flare up.

    Your child’s action plan gives clear guidance for all the adults who spend time with your child, from day care providers to teachers, coaches, camp counselors and others. With this plan in place, you can feel confident that these adults know how to respond to an asthma emergency.

    Asthma & the “allergic march”

    As the API and PARS show,
    kids with allergies face higher risks for asthma than allergy-free kids. Conditions like eczema, eosinophilic esophagitis, food allergies and
    nasal allergies or allergic rhinitis can develop slowly from birth, signaling a “march” toward an asthma diagnosis. This is why it’s so crucial that your child’s doctors work together to track symptoms and coordinate care.

    More information

    About Dr. Dunn


    Clinton Dunn, MD, FAAPClinton Dunn, MD, FAAP, is a board-certified pediatrician and allergist/immunologist who practices in the Hampton Roads Virginia area. He is a member of the American Academy of Pediatrics (AAP) and the AAP Section on Allergy and Immunology. His clinical interests focus on atopic dermatitis, asthma, food allergy and applying high quality evidence-based medicine for the improvement of pediatric allergic/immunologic diseases.

    About Dr. Dodson


    Addie Dodson, MD, FAAPAddie Dodson, MD, FAAP, is a board-certified pediatrician and currently completing her fellowship in pediatric pulmonology at Children’s Hospital Los Angeles. Dr. Dodson is a member of the AAP Section on Pediatric Pulmonology and Sleep Medicine. She currently serves as the section’s executive committee fellow-in-training liaison. Dr. Dodson’s clinical interests within pulmonology are growing while she continues in her fellowship, but she has special interests in asthma, use of technology to improve practice, medical education and advocacy.


    The information contained on this Web site should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances.

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  • VA Resource Navigator – National Center for Health Promotion and Disease Prevention

    VA Resource Navigator – National Center for Health Promotion and Disease Prevention

    VA Resource Navigator


     

    The VA Resource Navigator is a simple tool. It helps you access and understand the VA benefits you’ve earned. This go-to guide provides trusted web links, phone numbers, and QR codes to VA services and benefits.

    Find information about:

    • VA Locations
    • Records
    • Health Care
    • Disability and Benefits
    • Education and Training
    • Housing Assistance
    • Careers and Employment
    • Family member, caregiver, and survivor benefits
    • Pension
    • Burials and Memorials

    Download your own copy by clicking the Resources link or image above. Pass this website along to others so they too can learn about the VA Resource Navigator.

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  • Living With Phantom Limb Pain – Amputee Coalition

    Living With Phantom Limb Pain – Amputee Coalition

    Introduction

    Phantom limb pain (PLP) refers to ongoing painful sensations that seem to be coming from the part of the limb that is no longer there. The limb is gone, but the pain is real.

    The onset of this pain most often occurs soon after surgery. It can feel like a variety of things, such as burning, twisting, itching or pressure. It is often felt in fingers or toes. It is believed that nearly 80 percent of the amputee population worldwide has experienced this kind of pain.

    The length of time this pain lasts differs from person to person. It can last from seconds to minutes, to hours, to days. For most people, PLP diminishes in both frequency and duration during the first six months, but many continue to experience some level of these sensations for years.

    People are often reluctant to tell anyone that they are experiencing PLP or phantom limb sensations, for fear that they will be considered “crazy.” However, it is important to report these pains as soon as you begin to experience them so treatment can be started.

     

    What Causes Phantom Limb Pain

    Unlike pain that is caused by trauma directly to a limb, PLP is thought to be caused by mixed signals from your brain or spinal cord. This is an important concept to consider, because the treatment for this pain has differences from the treatment you would receive for other kinds of pain. New therapies for PLP all involve trying to change the signals from your brain or spinal cord.

    As with any other kind of pain, you may find that certain activities or conditions will trigger PLP. Some of these triggers might include:

    • Touch
    • Urination or defecation
    • Sexual intercourse
    • Cigarette smoking
    • Changes in barometric pressure
    • Shingles
    • Exposure to cold.

    If you notice any particular thing triggering an episode of PLP for you, let your healthcare provider know. Some triggers can be avoided — for example, you can prevent constipation or stop smoking. For other triggers, you will just have to understand and treat accordingly. You will not be able to prevent the barometric pressure from changing, but you will be able to understand that your PLP might be more severe on days with big shifts in the weather!

     

    Treating Phantom Limb pain

    Treating PLP effectively takes a multipronged approach. Medications of several different categories in combination with non-medication treatments seem to be most effective. This combination of medication/non-medication is similar to treating other painful conditions.

    For instance, if you broke your leg, you would expect to take narcotic pain medication, at least for a while. You would also elevate your leg and put ice on it. For PLP pain management, you will take medications directed specifically toward interrupting the pain signals in your brain or spinal cord as well as using certain non-medication therapies, which also work on your brain’s interpretation of these signals.

     

    Medications for Phantom Limb Pain

    There are many different categories of medications that can decrease your pain. Each of them is thought to work on different kinds of pain sensations. Here are the categories of some of the medications you might be given:

    • Acetaminophen and non-steroidal anti-inflammatory drugs (NSAIDs)
    • Opioids (narcotic pain medications)
    • Antidepressants
    • Anticonvulsants
    • Beta blockers
    • Muscle relaxants

    Some of these medications work best if taken in combination with other medications and if given at certain times of the day. The antidepressants typically used work best if given at bedtime, and are often taken at the same time as the anticonvulsants. Finding the right medications — with the fewest side effects — will require you and your healthcare provider to work closely together.

     

    Non-Medication Treatments for Phantom Limb Pain

    Alternative/complementary therapies can be helpful for the reduction of PLP. Here are some of them:

    • Acupuncture
    • Mirror box therapy
    • Biofeedback
    • TENS (transcutaneous electrical nerve stimulation)
    • Virtual reality therapy
    • Imagery
    • Music

     

    What You Need to Remember

    • Phantom limb pain/sensation is common for most people after amputation surgery. Symptoms generally improve over time.
    • Your phantom limb pain/sensation can be managed so that it does not overwhelm your life.
    • The goal of pain management is to reduce pain levels to allow you to get you back to living and enjoying life again.
    • Work closely with your healthcare team to create and maintain the pain management plan that works for you.
    • When possible, avoid things that trigger your phantom limb pain/sensation.
    • Use the Amputee Coalition Web site (amputee-coalition.org) to learn about new therapies and to let others know if a new therapy has worked for you.

     

    About the Amputee Coalition

    The Amputee Coalition is a donor-supported, nonprofit voluntary health organization serving the over 5.6 million people with limb loss and limb difference in the United States.

    For more information, please call 888-267-5669 or visit amputee-coalition.org.

     

    Acknowledgements

    This project was supported, in part, by grant number 90LLRC0001-01-00, from the Administration for Community Living, U.S. Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.

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