Pediatric kidney transplantation part 55

Maintenance immunosuppression

These are medications that your child will take every day for the rest of their life to prevent rejection of the transplanted kidney. There are different types of maintenance immunosuppressants. Your transplant doctor will choose the ones that are best for your child.

Pediatric kidney transplantation part 54

Induction immunosuppression

These are strong medications used to suppress, or weaken, the immune system at the time of the transplant operation and for the first few days after the transplant. They help to prevent rejection for days to weeks until your child can recover from the surgery and start taking enough of the medications by mouth that they will need for the rest of their life

Pediatric kidney transplantation part 53

Immunosuppression medications

Many different immunosuppression medications are used to prevent rejection in children receiving kidney transplants. Your transplant doctors will review this medications and tell you which ones your child will be receiving. The informations that follows is general information about some common side effects for the most common immunosuppression medications being used to prevent rejection of the kidney transplant. Immunosuppression after transplant can be separated into induction, which is the initial very strong immunosuppression your child will initially receive after transplant, and maintenance, which is the immunosuppression medication that your child will receive for the rest of their life.

Pediatric kidney transplantation part 52

Why is it important  to stick to one brand of medicine

Medications always have two names: the chemical or generic name and the brand name from the manufacturer. The same medications can be produced by different manufacturers. Each brand may have a different strength.

It is important to know the brand name and strength of your child's medicine and to keep choosing the same brand of drug to make sure you tell your transplant center  if the brand name or strength of the medicine changes, as your child's blood levels may need to be re-checked.  Your insurance provider may require you to use one brand of medication instead of another. Please let your transplant team center know if your insurance is requiring a change

Pediatric kidney transplantation part 51

Eating and drinking

Never let your child  eat or drink grapefruit or grapefruit juice. This includes any fruit related grapefruit, such as pomelo and any mixed fruit juices containing grapefruit juice. Grapefruit juice  can interact with some transplant medications, in particular raising  the levels of immunosuppressants in the blood. Never let your child  drink unpasteurized milk products  or untreated water as they can have infections that may be more harmful to your child because their immune system is decreased.

Pediatric kidney transplantation part 50

Travel

Make sure you are talk to your transplant team if you are planning on travelling (especially out of the country) in case special extra precautions are needed. When travelling, always keep the transplant medications with you. You risk losing the medications if you put it in check-in luggage and it get lost. Medication can also be damaged from being stored at freezing temperatures in the storage area. Keep your liquid medications in their original prescription bottles. When planning a vacation there may be risks, particularly infectious disease risks that you may not be aware of. When planning a vacation it is always a good idea to discuss your plans with your transplant team

Pediatric kidney transplantation part 49

Refilling prescriptions

Refill your medications on time. When your child misses doses of their medicine, there is a greater chance that the kidney will stop working properly. Always call your pharmacy  for refills a few days before running out

Pediatric kidney transplantation part 48

Storing medications

• Store transplant medications out of reach of small children or animals
• Store medications in a cool and dry place, but make sure to check the labels first to see if you should keep them at room temperature or put them in the refrigerator
• Never keep transplant medications above a stove or oven or in the bathroom. The heat and humidity from these places can damage them

Pediatric kidney transplantation part 47

Guidelines for taking medications

A list of basic guidelines that apply to many medications. Remember, though, that each medicine that your child needs has it owns rules. Please refer to the specific medication and ask your pharmacist, doctor, or nurse for any other information.

Pediatric kidney transplantation part 46

Giving medications  and reporting side effects:

• Always give medication at the same time every day and in the same way (with or without food), including weekends. If you give your child medicine at 9am and 9pm  on Monday, you must do the same every day of the week
• Never skip a dose. Skipping doses increase the chance that the kidney may be rejected  and stop working properly. If you skip a dose, do not make up for the missed dose by doubling on the dose next time you take it
• Do not stop of change any dose of your child's medications unless your transplant team tells you to
• Never give your child over-the-counter herbal (natural), or homeopathic medications or any medications prescribed by another doctor without talking to your transplant team first. This is because many medications interact with transplant medications, leading to unpleasant side effects or preventing the transplant medications  from working properly
• Call your transplant team right away if your child has side effects from any medications. They will tell you what to do

Pediatric kidney transplantation part 45

Understanding your child's medications

Because you are responsible for giving your child their medicine, it is very important that you talk to your pharmacist, doctor, or nurse  to completely understand the following points.

• Name of each medicine and why your child needs it
• When to take each medicine
• How to take each medicine
• How long your child will be on each medicine
• Possible side-effects of each medicine
• What to do if  a dose of medication is missed by accident
• How and when to order medications to make sure you do not miss any doses. Some of your medications  may only be available at a specialized pharmacy and not at your corner drug store

Pediatric kidney transplantation part 44

OTHER MEDICATIONS

Other medications are usually used to control side effects caused by the transplant medications or the surgery itself. Side effects include high blood pressure, stomach pains, and blood clots.
If your child does well, without side effects, the team will likely stop these medications.

Pediatric kidney transplantation part 43

ANTI-INFECTANTS

Your child has a higher risk of developing certain infections after kidney transplantation, particularly in the first few weeks to months. While not all infections can be prevented some of them can be prevented using anti-microbial and anti-viral medications. These antibiotics and anti-viral medications work to prevent or fight infections so your child can stay as healthy as possible while they get used to their new kidney. Different transplant programs give antibiotics and anti-viral medications for the first year after transplant and other patients may take them life-long. Sometimes they may be taken after being treated for a rejection episode, as this is when your child is usually given more immunosuppressants

Pediatric kidney transplantation part 42

IMMUNOSUPPRESSANTS

Immunosuppressants  (also known as anti-rejection medications) help to prevent the body from attacking  the new transplanted kidney. Immunosuppressants do this by suppressing, or weakening, the immune system, which usually fights infection and tries to destroy anything that it doesn't think should be there.

Your child will take immunosuppressants for the rest of their life, but over time they will need a lower dose.

Pediatric kidney transplantation part 41

TYPES OF TRANSPLANT MEDICATIONS:

In general, most transplant patients will be taking three types of medications:

• Immunosuppressants
• Anti-infectants
• Other medications

Pediatric kidney transplantation part 40

TRANSPLANT MEDICATIONS

The key to maintaining a successful kidney transplant is taking medications consistently and correctly for the rest of your child's life.

At first, you may feel overwhelmed with the new medications and the information about them. Your transplant team's goal is to make sure you are familiar with all of the medications your child will be taking before you leave the hospital.

Over time, it will become routine for you and your child to follow the medicine instructions. We want you to become responsible for giving the medications, and we encourage your child to become more involved in taking the medicines as they get older. However, remember that most adolescents continue to require supervision.

Pediatric kidney transplantation part 39

Other tests and procedures

Your transplant team will explain any other routine tests done in your center. They may include:

• Glomerular filtration rate testing, to see how well the transplanted kidney is working
• Bone mineral density, to assess bone strength
• 24-hour ambulatory blood pressure monitoring, to check blood pressure at regular intervals during your child's everyday routine
• Developmental assessments
• Echocardiograms
• Dilated eye exams

Pediatric kidney transplantation part 38

KIDNEY BIOPSY

A biopsy of the kidney may be necessary in the setting of decreased urine output, increased serum creatinine level, unexplained persistent fever of worrisome blood or protein in the urine. The biopsy can be done for many reasons including to evaluate for the possibility of rejection, recurrent kidney disease, drug toxicity or certain type of infections. Some children may have had kidney biopsies of their own kidneys before having a transplant. Those biopsies are done with the child lying face down on their abdomen. Because a transplant kidney is in a different place than the native kidney, a transplant kidney biopsy is done by a child lying on their back. The biopsy is done after consent is signed where the risks of biopsy  will be explained and after it has been decided how the patient will be kept comfortable during biopsy. Each transplant center has different procedures with regard to sedation medications or anesthesia for the child and where in the facility biopsy will be done but all centers  will have protocols for how the child is kept comfortable and safe during and after biopsy.

The biopsy is commonly done with the assistance of the radiologists and most frequently ultrasound is used to guide the biopsy and increased safety. The biopsy typically will be done using a biopsy needle going through a very small incision made in a numbed area of overlying skin. Usually 2 to 3 pieces of kidney tissue are obtained and sent to the pathology lab for staining and processing, a procedure that can take anywhere from one to three days to complete. The primary risk of a kidney biopsy is bleeding so certain medications that may increase the risk of bleeding may need to be stopped or held before and after the biopsy. Your transplant center will tell you if any medication changes need to be made. Following the biopsy some children are kept in the hospital overnight while others might be able to go home after a periode of observations for complications. Each transplant center will have their own protocol for how this occurs. Your child will have some activity restrictions after the biopsy which your transplant center will review with you.

Pediatric kidney transplantation part 37

KIDNEY TESTS

Renal ultrasound

Your child will have had a renal ultrasound before the transplant. This test uses sound waves to:

• Check the size, shape, and structure of the transplanted kidney
• Determine blood flow to the kidney and rule out thrombosis (blood clots) or urine leak
• Identify if there is any fluid around the kidney (hematoma, lymphocele)

Pediatric kidney transplantation part 36

Laboratory tests

Most transplant patients have regular blood, urine, or other lab tests. Some things that are tested include:

• A patient's white blood cells count, to show any possible infection or side effects from transplant medications 
• The level of waste products, such as creatinine and blood urea nitrogen in the blood, to show how well a patient's kidneys and liver are working
• "Levels", which is short for how much immunosuppresant medications stays in a patient's bloodstream and for how long (high levels could be toxic or suppress the immune system too much and low levels may cause a patient to reject the new kidney)
• Urine analysis and culture to make sure there are no signs of urinary infection and to check for protein in the urine which can be abnormal)
• The amount of glucose (sugar), or lipids (cholesterol and other fats) in the blood (some transplant medications can made them too high)
• Signs of any recent  viral infections
• The level of HLA antibodies in the blood, to check if the body might start to reject the donor kidney

Pediatric kidney transplantation part 35

Clinic visits and routine testing

Clinic visits and routine tests are intended  to track your child's health and development after their kidney transplant and identify any problems as early as possible.

This section outlines some tests that kidney transplant  patients may undergo, but remember that every patient and every transplant program is different. Your transplant team will explain the routine in your center and the plan for your child's specific situation and health concern.

Immediately after their transplant, your child will usually visit the clinic once or twice a week. Over time, these visits will often become less frequent, once your child doesn't  have any problems. Many centers eventually cut down appointments to once every six months for patients who are doing well.

Pediatric kidney transplantation part 34

LIFE AFTER KIDNEY TRANSPLANT

After the transplant, your child's care will be managed by a health care team. It will consist of your pediatric nephrologist, your transplant surgeon, usually a nurse coordinator, a dietitian, a pharmacist and a social worker.

Similar to before the transplant, you will continue to see your child's local family doctor. Right after your child is discharged from hospital, they will need to have frequent follow-up appointments at the kidney transplant clinic. These can be emotionally and financial draining, but the transplant team will work with you to help your child's follow up care go as smooth as possible.

Your child's appointments will be less frequent after the first few months and especially after the first year. Eventually, the appointments will more easily fit into a normal family schedule.

Note, too, that schedules and tests may change for many different reasons. Your kidney transplant team members will explain why they are doing a certain test or procedure in your child at a specific time. Many of the principles of renal transplant care are the same for children and adults.

Pediatric kidney transplantation part 33

Working with your child's health care team

Once your child is out of the ICU and in a regular hospital room, the nurse who looks after them regularly will also have other patients to care for, unlike the ICU. Because of this you will be encoraged to play a greater role in your child's care.

\At this point, too, other transplant team member, such as the physiotherapist, occupational therapist, and dietitian, become involved again in your child's care. It is important that you and your child follow their recommendations and instructions so that your child can begin to experience life with their new kidney.

This is also a time when the transplant coordinators and pharmacists will work closely with you to make sure that you are getting ready to care for your child at home.

Caring for a child with a chronic illness and going through a transplant can be stressful for everyone and can affect family dynamics. It is important to consider how other siblings might feel and make time for spouses/partners. Many families find benefit from family-centered therapy. If this is something you  feel might be helpful, your transplant team can help you identify sources of support.

Pediatric kidney transplantation part 32

Moving out of the ICU

As your child recovers from the surgery, the medical team will reduce their medications and begin to remove the invasive lines and monitors. The breathing machine will do less work as your child is woken up from sedation. When your child is finally disconnected from the breathing machine, they will be able to speak and, in time, have a drink.

Depending on their condition, a child can stay in the ICU for a few days or even a few weeks. When your child no longer needs intensive care, they will be moved to a regular hospital room.

Although most of the monitoring equipment will have been removed, your child may still have a bladder catheter and intravenous infusions. Over the following days, these will be gradually removed as your child's condition improves.

Pediatric kidney transplantation part 31

Lab testing

Your child will have frequent blood tests to determine how the new kidney is  working and to monitor for complications after surgery. Most often these blood tests can be drawn from one of your child's intravenous lines, avoiding the need to be poked for lab draws during this initial period.

Pediatric kidney transplantation part 30

Your child's incision

Your child will have an incision (cut) along part or the entire length of the abdomen. This will be covered with a dressing. After two or three days, the dressing will be removed and left off. Depending on their surgeon's preference, your child may have staples (wire) or a suture (thread stitches) on the incision,

Pediatric kidney transplantation part 29

DEVICES AND TUBES

• Your child will have a bladder catheter (a soft plastic tube, aka Foley catheter) that will continuosly drain urine. This tube is inserted during surgery
• A nasogastric tube may also be in place. This tube is inserted through a nostril and then passed down into the stomach. It is designed to drain stomach fluid.
• As your child will still be asleep or very drowsy at this time, they will get fluid, medications, and nutrition through intravenous (IV) drips. These will normally go into your child's neck or chest and arm or the back of their hand.

Pediatric kidney transplantation part 28

THE INTENSIVE CARE UNIT

What to expect when you first see your child

You child will be attached to many tubes and monitors, which can be overwhelming when you first see them. Remember, though, that your child's team will explain all the monitors, tubes, and IVs to you in detail.

Monitors

Your child may be on a ventilator (breathing machine) until they are ready to breath on their own. This may take a day or two, but it can sometimes take a bit longer for babies. In addition to the ventilator, several monitors in the room will be used to check your child's heart rhythm, blood pressure, blood oxygen level and perhaps other signs, depending on your child's specific situation

Pediatric kidney transplantation part 27

The intensive care unit (ICU) and kidney transplant ward

After surgery your child will be transferred to the intensive care unit. When your child first arrives in the intensive care unit, they will require a periode of "setting in". This is usually takes at least one or two hours. Your child's nurse will tell you when you can visit.

Pediatric kidney transplantation part 26

Fears and concerns about surgery and recovery

It is normal to be overwhelmed by the scale of transplantation and its effect on your life, your family, and your future. Some people become very emotional for a time and you may experience many confusing or overwhelming feelings. This is normal.

Maintaining routine during hospital stays

The hospital stay can be very upsetting for children. Their daily routine and sleep pattern change. They will also face strange and sometimes  painful tests and meet many new people. It is normal for them to be irritable and bad-tempered after this experience, especially if their stay in the hospital has been a long one.
The experience can be particularly hard for younger children, who especially benefit from a regular routine. Try to keep to familiar routines as much as possible during your child's treatment. Bed time routines are especially important for good sleep. Be sure to bring your child's favorite  blanket or toy that they use to fall asleep.
When your child leaves hospital after surgery, it may take some time for things to get back to "normal". If you have questions or concerns, the members of the transplant team are there to help.

Pediatric kidney transplantation part 25

Many hospitals prepare children for surgery using age-appropriate  materials such as soft cloth dolls, puppets, medical equipment, photographs, books, and other resources. They may be able to have a tour of the hospital ward prior to the surgery if they haven't stayed there before. These programs not only teach your child about hospital stays and procedures but also give them a chance to express their feelings in a non-threatening way and address any misunderstanding. When your child feels prepared, they are less afraid and feel more in control.

The transplant surgery will typically take 4 or more hours. The transplant surgeons and anesthesiologist will meet with you and your child prior to the surgery to discuss  the procedure, obtain consent, discuss the anesthesia and answer any last minute questions you may have.

Pediatric kidney transplantation part 24

Tips for talking to your child about their transplant surgery:

• Tell your child what their incision (opening for surgery) or scar will look like
• Draw a picture of an incision on a doll or on their abdomen
• Tell your child that they will have some pain but that  they can ask for medicine to make it better. A child often is anxious about surgery because of their fear of pain
• Tell them that the doctors and nurses are on their side and helping to make them better
• Check that your child understands what will happen. For instance, ask them to explain in their own words what they think will happen or what could happen

Pediatric kidney transplantation part 23

Preparing for the hospital stay

Children coming to the hospital usually have many questions and concerns, even if they do not know how to express them. Before your child comes to the hospital, give them as much honest information about their condition as you think they can understand.

Encourage your child to trust the medical staff. It is important that children believe that we are all on the same team. If your child is very anxious you may wish to speak to a counselor. Your transplant team wants your family to be successful, so don't be afraid to ask them for help or for a referral to someone who might be able to provide extra support to your family.

Some transplant programs include checks for stress, depression, and anxiety in the overall transplant assessment and routinely  have older children needing  a transplant, meet a psychiatrist or doctor in adolescent medicine.

Pediatric kidney transplantation part 22

How will a transplant change your child's life

A lot depend on what your child's life was like before transplant. If they are a "normal" kid and have never taken medicine a day in their life, a transplant will make a big diffrence in their life. On the other hand, if they have struggled with kidney disease in the past, they may be familiar with medications, blood tests and frequent visits to the doctor. The biggest change in your child's life is that they now have a new kidney and a chance for a full life. This gift of life is not without cost, however;

• Your child will have to take medicine every day for the rest of their life to make sure their body does not reject the new kidney
• The medicines used to prevent rejections put your child at increased risk for other problems including infection, tumors and other possible side effects  such as high blood pressure or diabetes
• They will also need to have blood and other tests for the rest of their life to make sure that their medicine is working well, look for any side effects, and look for signs of rejection and infection. They will need to develop relationships with different healthcare professionals and learn to be part of their own health care team as they get older and move from a pediatric to adult care. Good communications with your transplant team is essential to success

Pediatric kidney transplantation part 21

Can I contact the donor family?

It is natural for some families to want to thank the donor family. Confidentially is very important and some donor families do not want to have contact with the family of the person who receives the donated organ.

If you would like to thank the donor family, the best way is to write a letter without putting in any identifying information. You may like to ask your transplant coordinator to help you with the letter.

They can then pass it on to the donor coordinator  who dealt with the donor family and can find out if they want to receive the letter.

Pediatric kidney transplantation part 20

Where do deceased donor kidneys come from?

Kidney donors can be  anyone (a child or an adult) whose brain has been so damaged by injury or disease that the brain dies, even with the best medical care. When someone has reached this stage, it is called being "brain dead". The donor might have been injured in  a car accident or a fall or by downing, for instance, or they might have had a brain tumor or other serious medical condition affecting their brain. Although the donor is no longer alive, their major organs can be saved for a short time with medications and machines so that they can be removed and transplanted into someone else.

There is also a circumstance known as a (DCD) donor (Donation after Circulatory  Death). This term refers to a donor who has suffered devastating and irreversible brain injury and may be near death but is not considered "brain dead" by the formal medical definition of brain death. In this circumstance, the family may decide to withdraw life support. When life support is withdrawn and the heart stops beating, the organs are then recovered in the operating room.

You and your child may have a lot of questions about the donor, but please bear in mind that this informations always confidential. The members of the transplant team only know the information they need to carry out the transplant safely. For example, they can not tell you the kidney donor's name or where they lived. It is important to respect the privacy of the donor family's choice when they donate the kidney for your child.

Pediatric kidney transplantation part 19

What information about my child goes on the wait list?

The wait list  will include details about your child, including:

• Name, gender, race
• Date of birth
• Cause of chronic kidney disease
• Blood group
• Weight
• Height

Pediatric kidney transplantation part 18

How does my child get on the kidney transplant waiting list?

If your child does not have a potential living donor they may be placed on the national deceased donor waiting list through their transplant center. Children  who are listed for deceased donor kidney transplant before their 18th birthday receive priority on the national waiting list. Adults and children can be listed for a deceased donor kidney at more than one transplant center and this occurs  most commonly when their transplant doctors are concerned that if may be difficult to find a suitable kidney. In some situations, your child may be placed on the deceased donor waiting list "on hold" even if your child has a potential living donor. This allows your child to begin to accumulate waiting time on the list just in case their living donor becomes ineligible for any reason.

Pediatric kidney transplantation part 17

What happens after the assessment?

Your child may not need to on dialysis before receiving a kidney transplant. For many reasons, your child's physicians may advocate for living donor kidney transplantation. Children receive a kidney from one of their parents. Each biological parent is already "half matched" for special proteins on white blood cells called HLA. The degree of matching can alter risk of rejection. Rejection is when the child's immune system recognizes the new kidney as foreign and "attacks" the new kidney with the intention of doing  harm to it. The better the HLA matching, the less likely the body will try to reject the transplant. If children do not have a parent who is a suitable donor, they may receive a transplant from another related or unrelated living adult. If an adult is interested in donating  a kidney he/she should contact the kidney transplant office to inform the transplant team of this wish. The donor will be evaluated separately for donation by the adult transplant team to make sure of the donor's good health and eligibility to donate the "gift of life"

Pediatric kidney transplantation part 16

What happens after the assessment?

After these consultations and tests, the whole transplant team meets to decide if your child is a suitable candidate for a kidney transplant. The team approach to care makes sure that every treatment option for your child's case will be discussed.

If the transplant is the best option, the team will then decide how quickly your child needs it and whether your child should receive  a transplant from a living donor or be placed on the kidney transplant waiting list. The team will develop a treatment plan designed to give your child the best chance of having a successful transplant,

If your child is able, it is important that they, along with you, take part in making decisions about their treatment. Receiving and living with a transplant is a big commitment, one that will stay with your child for the rest of their life.

Only if the transplant team agrees that transplant is the best option for your child and you agree that you want your child to have a transplant, will your child go to transplant.

Pediatric kidney transplantation part 15

Standing members of the transplant team:

• Transplant nephrologist
• Transplant surgeon
• Transplant nurse coordinator
• Transplant pharmacist
• Social worker
• Dietitian
• Financial representative