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Kidney Transplant

  • "Kidney transplantation is a little bit different from other organ transplants because we have two options--transplant and dialysis--and both are good treatments for children with chronic kidney disease. We work closely with the dialysis program to find the best way to treat each child."

    --William E. Harmon, MD, medical director, Kidney Transplant Program

    If your child has severe end-stage kidney disease (ESRD) that no longer responds to treatment, a kidney transplant is likely to be the best option to give her a longer and healthier life. The kidney transplant operation is done to replace diseased kidneys with a healthy one from another person.

    kidney transplant

    • The kidney may come from an organ donor who has died or from a suitable living person, either related or not related.
       
    • The national average for waiting time on the deceased donor kidney organ list is about six to 12 months for children. At Children’s Hospital Boston, it’s even better—we’re part of the New England Region of UNOS, where children currently wait about three months for an organ.
       
    • On average, a transplanted kidney should function for about 10 years (from a deceased donor) to 20 years (from a living donor).

    It’s important to remember that a transplant is more than just an operation – it also includes:

    1) Doing everything we can to make sure your child’s health is as robust as possible before surgery. In many cases, a short course of dialysis is the best way to do this. It’s also important to make sure that the family is ready for a transplant.

    2) Life-long medications your child will need to take to prevent her immune system from rejecting the new kidney

    How Boston Children’s approaches a kidney transplant

    We’re the only kidney transplant program in New England dedicated to caring for young children and teens. Children are our priority; that’s why we played an instrumental role in changing the way pediatric patients were listed on the organ waiting list. Thanks to our intervention, patients 18 years old and younger now receive priority listing on the kidney transplant list. We also offer the only specialized pediatric dialysis unit in New England.

    Our compassionate caregivers know that your child is a person, not just a patient, and we provide support services for your child and your family throughout all stages of treatment, including:

    • Back to School Visits, which help patients readjust to life in the classroom
    • referrals to mental health professionals and support groups
    • special transition to adult transplant programs for older patients

    Kidney transplant: Reviewed by William Harmon, MD
    © Boston Children's Hospital, 2010

    Kidney Transplant Program

    Boston Children's Hospital
    300 Longwood Ave
    Farley 4
    Boston MA 02115

    617-355-7636 
     fax: 617-730-0342 

  • We understand that you may have a lot of questions if your child is a candidate for a kidney transplant:

    • How does it work?
    • How long will my child need to be hospitalized?
    • How will it affect my child in the long term?

    We’ve tried to provide some answers to these questions, and when you meet with our experts, we can fully explain your child’s options.

    What conditions are treatable with a kidney transplant?

    A kidney transplant may be an option if your child has end stage renal disease (ESRD) and will not be able to live without dialysis or a transplant. Conditions that lead to ESRD include:

    Potential complications

    A transplant can offer your child a longer and healthier life, but the procedure, like any surgery, does carry its own risks. Your child’s transplant team will watch for these signs.

    What is rejection?

    Rejection is a normal - and, under most circumstances, healthy - reaction of the body’s immune system to a foreign object. When a new kidney is placed in your child's body, her immune system attacks it, not recognizing that it is useful. To prevent this, your child will have to take medications to weaken her immune system for as long as she has the transplanted kidney.

    How can I tell if my child is experiencing an episode of rejection?

    It’s not always easy, and many children have rejection without any symptoms at all. Your child’s transplant team will watch for these signs and show you what to look for. Some of the most common signs include:

    • fever
    • tenderness over the kidney
    • elevated blood creatinine level
    • high blood pressure
    • decreased urine volume

    Your child’s transplant team will tell you whom to contact if she shows any of these symptoms.

    What medications are used to prevent rejection?

    Your child’s transplant pharmacologist will work closely with the rest of the transplant team to determine the best medications for your child. Some of the most common ones are:

    • cyclosporine
    • tacrolimus
    • mycophenolate mofetil
    • prednisone
    • rapamycin
    • Thymoglobulin
    • Campath
    • Basiliximab

    Anti-rejection medications work by suppressing the immune system, but that means that your child will be at higher risk for infections. Our team will continually monitor her health through blood tests and other exams.

    Children's has been on the forefront of testing new medications that prevent rejection but have as few side effects as possible. Most often, a child is treated with a combination of three medications, but our newest research protocols have developed ways of using only one or two.

    What infections will my child be susceptible to?

    Some of the infections your child may be especially susceptible to include:

    • oral yeast infections (thrush)
    • urinary tract infections
    • cytomegalovirus (CMV) or Epstein-Barr virus (EBV)
    • respiratory viruses

    This risk of infections is especially high during the first few months after the transplant. This is because patients need higher doses of anti-rejection medicines during this time, so their immune systems are especially suppressed.

    Long-term outlook

    What’s the long-term outlook for my child?

    It’s impossible to say for sure, because each child is different, and living with a transplant is an ongoing process. On average, a transplanted kidney from a living donor functions for around 20 years, and a kidney from a deceased donor functions for around 10 years. When the new kidney stops functioning, in most cases the child goes back on a course of dialysis, and then she will go back on the transplant list. In many cases, we also perform an operation to remove the failed kidney.

    Finding a donor kidney for your child

    Where do transplanted kidneys come from?

    More than half of the kidney transplants performed at Children’s come from living donors. A living donor is a family member or unrelated individual who is able to donate a kidney, and whose kidney is a good match for your child.

    Transplanted kidneys can also come from deceased organ donors–adults or children who have become critically ill or injured and will not live as a result. Adults can agree to be an organ donor, and parents or spouses can also agree to donate a relative's organs.

    In most cases only one kidney is transplanted, but in rare situations, a child may receive two kidneys from a deceased donor.          

    Who can be a kidney donor?

    To protect everyone involved, there are a few restrictions in place. In order to donate a kidney, a potential kidney donor must:

    • be at least 18 years old
    • have a similar blood type as the recipient, and meet other matching criteria
    • pass a comprehensive medical exam to make sure he or she is healthy enough to donate. This can take up to two or three months.

    Can someone in my family donate a kidney?

    Absolutely, provided that there is no medical reason that would prevent this person from donating, and that the individual is at least 18 years old. We never put a donor’s health at risk for the sake of the recipient. 

    Assuming that a potential donor is in good health, the only thing that would absolutely exclude him or her from being able to donate a kidney is having the wrong blood type. Here’s a brief overview of how the process works:

    1. We test the potential donors’ blood to determine the blood type. If their blood type is incompatible with your child’s blood type, they cannot donate.
       
    2. If the blood types match, we measure six antigens called HLA (human leukocyte antigens) in their blood. The more antigens they have that match your child’s antigens, the more successful the transplant is likely to be. Each parent automatically matches three antigens with their child (since the child inherits three from each parent).
       
    3. Your child’s doctor will explain the results of the antigen testing to you. He or she may recommend which person would make the best match, but it is the family who chooses who will donate the kidney. 
       
    4. Whomever the family selects will begin the physical evaluation. This is a comprehensive process that takes two or three months. If we at any time find a reason why this person cannot donate (such as being prohibitively overweight or not being in sufficiently good health for major surgery), your family will choose a second person from the HLA match list to begin the physical evaluation, and so on. 

    Remember that in the vast majority of cases, there is no rush for a kidney transplant, since dialysis is almost always a treatment option. Your child’s doctor will be happy to discuss this process with you in more detail, and answer any questions you may have.

    Is it safe to donate a kidney?

    Yes. Kidney donors can live healthy lives with only one kidney, and part of the evaluation process is determining whether a potential donor is healthy enough to undergo a major operation.

    Is it safe to receive a kidney from a deceased person?

    Yes. The kidney organs are thoroughly evaluated by experts to make sure that they are suitable for transplant and do not have any diseases that could be transmitted to your child. 

    Who distributes deceased donor organs?

    The Organ Procurement and Transplant Network (OPTN) is responsible for transplant organ distribution in the United States. They oversee the distribution of most types of solid organ transplants–in addition to kidneys, they also allocate livers, lungs, pancreas, hearts and corneas. As of 2010, the contract is held by the United Network for Organ Sharing (UNOS).

    How does UNOS distribute kidney organs?

    UNOS receives data about patients who need organ transplants from all over the country, and places them on a waiting list. Your child’s transplant team will send her data to UNOS, and update them as her condition changes.

    Children waiting for a transplant receive “points” for several factors, including:

    • how long they have been waiting
    • the closeness of the match with an organ that becomes available
    • where the transplant center is located in relation to the location of the donor

    When a kidney from a deceased donor becomes available:

    1. A computer searches the list and ranks all candidates in order of their total number of points.
    2. The kidneys are offered to the candidates with the most points.
    3. If the match isn’t right or it’s not the right time for the patient to receive a transplant, the kidney is offered to the next candidate on the list, and so forth.

     

    FAQ

    Q: Why does my child have to go back on dialysis?  Why can’t she be put back on the list as soon as the new organ starts to fail? 

    A: As the new kidney loses its functionality, your child will again experience the symptoms of end-stage renal disease (ESRD). Her immune system will be compromised because of the immunosuppressants she has been taking, her blood pressure may be high, and she may be having problems absorbing nutrition. Time spent on dialysis allows us to stabilize her health–the better her health when she goes in for her next transplant, the better the chance that it will be successful. 

    Q: Will my child be able to return to school after the transplant?

    A: Many of our children do quite well and are able to return to school in about two or three months after their transplant. While precautions need to be taken, we encourage them to lead full and happy lives– to go to school, play sports, spend time with friends and enjoy hobbies.

    Q: How long is the wait for a donor kidney?

    A: The national average for waiting time on the deceased donor kidney organ list is about six to twelve months for children. At Children’s, it’s even better–we’re part of the New England Region of UNOS, where children currently wait about three months for an organ. We know waiting is never easy and can direct you to resources and community support groups that will help you get through this difficult period.

    Q. What happens to the living donor after the operation? 

    A: Individuals who donate a kidney will be hospitalized for around three days after the surgery, but will require three to four weeks for full recovery. After that, they can return to their normal healthy lives without restrictions or limitations.

    Q: What will happen after the transplant?

    A: Your child will take medication to prevent the new kidney from being rejected for the rest of his life. We’ll also have follow-up appointments here at Children’s, so we can monitor his health, adjust his medications and stay in touch with your family. Since your child’s immune system will be compromised, your family may need to make some adjustments to protect his health.

    Questions to ask your doctor

    When you learn that your child needs a kidney transplant, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you.

    Lots of parents find it helpful to jot down questions as they arise – that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed.

    If your child is old enough, you may want to suggest that she write down what she wants to ask her health care provider, too.

    Some of the questions you may want to ask include:

    • Is a kidney transplant the best option for my child? What other treatments might be available?
    • How many kidney transplants have been done at this institution?
    • How many have been done by the surgeon performing my child’s transplant? How long has he or she been doing this type of surgery?
    • Are there factors other than my child’s health that go into the decision of whether to move forward with the transplant?
    • How do your results compare with those of other transplant centers?

    Teens and transplants

    Being a teenager can be tough enough without having to cope with everything that comes with having a transplant. Along with the physical changes, teens also experience cognitive and emotional changes that influence their thoughts and behaviors, sometimes in unpredictable ways.

    Learn about the special challenges your teen may face as a transplant patient-and discover some ways you can help.


  • If it seems like it’s the right time for your child to have a kidney transplant, we’ll ask you to come to the hospital for an informational visit. Your family will meet our transplant team, and you’ll be invited to ask questions and share any concerns you may have. We encourage you to bring family to this initial meeting.

    If you and the transplant team agree that a kidney transplant is a good idea, your child will be scheduled for an extensive array of tests that are necessary to:

    • confirm that a transplant is the appropriate treatment
    • determine how urgent the need for a transplant is
    • make sure that the donor kidney your child receives will be a good match

     

    Who will we meet with during the transplant evaluation?

    A transplant is a complex procedure that touches different medical specialties – that’s why you and your child will meet and work with Boston Children’s Hospital experts from a number of different areas, including:

    • Kidney transplant surgeon: surgeons who specialize in transplantation and who will be performing your child’s surgery. They follow your child before the transplant and continue to follow her after the transplant and after discharge from the hospital.  
    • Transplant nephrologists: doctors who specialize in disorders of the kidneys. They will help manage your child’s condition before and after the surgery.  
    • Urologists: surgeons who specialize in disorders of the genitourinary tract  
    • Kidney transplant nurse coordinator: a nurse who organizes all aspects of care provided to your child before and after the transplant. The nurse coordinator will provide information for you and your family, and coordinate the diagnostic testing and follow-up care.  
    • Transplant infectious disease specialist: a clinician who will perform a physical exam and review your child's vaccination records. We will want to know if your child has any particular environmental exposures or has recently traveled to a foreign country.  
    • Transplant psychiatrist or psychologist: doctors who will meet with you and your child to discuss coping strategies, stress management and family life.  
    • Social worker: a specialist who will meet with you and your family to identify support systems and discuss your feelings about transplant. He or she can provide you with information about resources related to finances, relocation expenses and support groups.  
    • Transplant dietician: our registered dietician will evaluate your child's diet and nutritional requirements. Maintaining a healthy lifestyle and good nutrition before the transplant is very important.  
    • Transplant pharmacologist: a specialist who makes sure that your child is getting the exact right dosages of the medication she has been prescribed.  
    • Physical therapist: a specialist who will discuss the importance of exercising before transplant in a way that is appropriate for your child.  
    • Dentist: your child will meet with her own dentist or one here at the hospital. The goal is to treat any cavities, infections or tooth abscesses before transplant, since these conditions can be problematic once your child begins to take medicine to suppress his immune system.

    Other members of your child’s transplant team may include:

    • transplant Child Life specialists
    • anesthesiologists
    • hematologists
    • respiratory therapists
    • lab technicians

    Boston Children’s is also home to one of the two pediatric kidney transplant training programs in the country. Your child is in good hands with us.

     

    What tests are done during the evaluation?

    Your child’s transplant team will order different tests to rule out infections, see how well her organs are functioning, and make sure a donor match is compatible. These types of tests may include:

    • Blood tests
      • blood type – Your child and the donor must be of compatible blood types.
      • clotting studies, such as prothrombin time (PT) and partial thromboplastin time (PTT) – tests that measure the time it takes for blood to clot
      • blood chemistries – These may include serum creatinine, electrolytes (such as sodium and potassium), cholesterol, and liver function tests.
      • antigens and antibodies – These tests help determine how likely it is that a transplant will be successful by checking the genetic types of your child's cells as well as the antibodies in your child's blood.
      • Infections: Other tests will check for exposure to viruses, bacteria and infections including:
        • hepatitis A, B and C
        • HIV
        • cytomegalovirus (CMV)
        • Epstein Barr virus (EBV)
        • herpes simplex virus (HSV)
        • tuberculosis (TB)
        • Other kinds of tests
          • renal ultrasound – a non-invasive test in which a transducer that produces sound waves is passed over your child’s kidney
          • cystourethrogram (VCUG) – an x-ray of your child’s bladder after the clinician has injected contrast dye into it. This study is performed to identify any problems that might interfere with the functioning of the new kidney.

    The transplant team will consider all information from interviews, your child's medical history, physical examination and diagnostic tests in determining whether your child has reached a level of end stage renal disease that requires a kidney transplant. They may also decide that some additional studies or procedures are necessary before the transplant to ensure its chance of success.

    Once your child has been fully prepared to have a kidney transplant, the transplant will be scheduled if there is a qualified living donor. If there is no living donor, your child will be placed on the United Network for Organ Sharing (UNOS) list.

  • For about two-thirds of children who receive kidney transplants, treatment starts with a course of dialysis  to make sure they’re in the best health possible for the transplant. If your child’s doctors think that she should receive dialysis, they will explain the options to you fully.

    Once you’ve been notified that a new donor kidney has been found, things move very quickly. It’s normal to be nervous, but our team will make sure that you and your family are comfortable and informed.

    What if my child is receiving a kidney from a living donor?

    If your child is receiving a kidney from a living donor, her admission will be scheduled for the day before the surgery.

    What happens when we arrive at the hospital?

    When you arrive at the hospital, you'll go directly to the Transplant Unit, an inpatient unit designed for solid organ transplant patients. There, members of your the transplant team will perform a physical exam and run some tests to make sure your child is ready to go to the operating room. Your child may need to undergo dialysis before transplant.

    How long will the transplant operation take?

    Most kidney transplants take around four to six hours, although this could vary greatly depending on your child’s case. During the surgery, a member of the transplant team will keep you informed about the progress of the transplant.

    What happens after surgery?

    After the surgery, depending on how closely your child needs to be monitored, she will go to either the intensive care unit (ICU) on 7 South or the Transplant Unit on 10 South. After her condition is stable, your family is welcomed to visit.

    During this time, the transplant team will educate you and your family on all aspects of caring for your child after her operation. This will include information about medications, activity, follow-up, diet and any other specific instructions.

    We know that a transplant operation is a time of great anxiety, and your child’s entire transplant team will be available to answer questions throughout her hospitalization.

    How long will my child be in the hospital after the transplant?

    This may depend on how sick your child was going into transplant, but a typical hospital stay is one to two weeks.

    If my child was given a kidney from a living donor, how long will that person be in the hospital after the operation?

    People who donate a kidney are usually hospitalized for around three days after the surgery, but will require three to four weeks for full recovery.

    Follow up

    Your child will have very close follow-up with the transplant team after leaving the hospital to monitor her overall health and the function of the new kidney. These follow-up visits will include:

    • a complete physical examination
    • continuing education for you and your child
    • medication changes
    • kidney tests to make sure that the transplanted kidney is working normally
    • blood work to make sure your child is getting the right dosage of medication

    Your child’s transplant team will design a drug regime tailored to meet your child’s needs. Expect that the dosage will change — typically, the doses

    1. are high for the first few months after transplant, when the risk of rejection is greatest
    2. change frequently during the first year as your child’s body adjusts to the transplant
    3. gradually reduce to "maintenance" levels by about one year after the surgery

    How often will my child need follow-up appointments?

    Your child will typically be asked to come in to Children’s or to her local specialist twice per week for the first two months after the transplant, and then once per week for the next two months. After that, they are generally less frequent unless a problem arises.

    These visits are essential to make sure your child’s medicine is at the right dosage, catch and treat any complications that might arise and make sure that your family and your child’s transplant team remain in touch.

    How can I help keep my child safe after the transplant?

    We understand that you will want to do everything possible to protect your child and her new kidney, and there are some steps you can take to minimize the risk of infection. 

    What's the long-term outlook for my child after kidney transplant?

    Since every child is unique and every transplant is different, there’s no way to know for sure. On average, a transplanted kidney should function for about 10 years (from a deceased donor) to 20 years (from a living donor). When the new kidney loses functionality, and your child has end-stage renal disease (ESRD) she can go back on dialysis to improve and stabilize her health before the next surgery, and then her name is put on the kidney transplant list. 

    Results continually improve as physicians and scientists learn more about how the body deals with transplanted organs and search for ways to improve transplantation.

    Coping and support

    We understand how disruptive and frightening a kidney transplant can be — not only for your child, but for your whole family. From your first visit, you’ll work with a team of professionals who are committed to supporting you.

    Patient education: Our nurses will be on hand to walk you through your child’s treatment and help answer any questions you may have — What symptoms might my child have? What do we do next? They will also reach out to you by phone, continuing the care and support you received while at Children’s.

    Parent to parent: Want to talk with someone whose child has had a kidney transplant? We may be able to put you in touch with other families who can share their experience.

    Faith-based support: If you are in need of spiritual support, we will help connect you with the Children’s chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.

    Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child’s condition, stresses relating to waiting for an organ, and dealing with financial difficulties.

    And on our For Patients and Families site, you can read all you need to know about:

    • getting to Boston Children’s
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family
  • The Transplantation Research Program at Boston Children’s Hospital provides a rich environment for collaboration of scientists and physicians, ensuring that our patients have access to the most up-to-date treatments and strategies available.

    Scientists in our Kidney Transplant Program are leaders in pediatric kidney transplant research, and their goal is to bring their innovations to your child’s bedside as quickly as possible. We also have a great number of partnerships with top research, biotech and health care organizations.

    Since 1994, we have participated in every NIH-sponsored pediatric kidney transplant research study – more than any other program in the nation. The results of these studies have led to significant improvements in children’s post-transplant treatment options, including the development of steroid-free protocols that may allow her to avoid such undesirable side effects as obesity, diabetes and heart and liver disease.

    One of our current goals is to make your child’s post-transplant life easier by reducing the number of immunosuppressive medications she must take to just one. This will not only further minimize any side effects she might experience, but it also makes the regimen easier to follow.

    Current and upcoming studies at Boston Children’s include:

    A trial that requires children to take only one chronic immunosuppressive medication after their kidney transplant

    A study designed to learn why some children, particularly adolescents, may not take their medications as prescribed, and what we can do to help them

    A study that determines whether:

    • Children develop antibodies after transplantation
    • Those antibodies cause long-term damage to the kidneys
    • A new medication may stop the production of those antibodies
  • PEGGY AND RILEY'S STORY

    Peggy Crowder donated a kidney to her 14-year-old daughter, Riley, who was born with a multicystic dysplastic kidney, a developmental condition in which her kidney had little to no normal functioning. At age 11, it was determined that Riley would need a kidney transplant. After Peggy was deemed a match, she read everything she could get her hands on to prepare for the transplant. But even the most informative medical journals and health-related Web sites couldn't prepare the Crowders for the reality of going through a kidney transplant.

    "Words on a page just can't describe what it's truly like to see your child in pain and suffering," Peggy says. "You're scared; they're scared. But you do everything you can to keep it together and stay positive."

    Riley's transplant was a success for both daughter and mother, and shortly thereafter, Peggy, Riley and Taylor, Peggy's younger daughter, were asked to share their story as part of the Transplant Experience Journal.

    Read more.

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