Congratulations! Your child now has a ‘new’ functioning kidney. This is a very exciting time for them and the rest of your family, but it is also normal for you to feel a little anxious in the lead-up to your child’s discharge from hospital.
Optimal health for your child and function of their newly transplanted kidney is dependent upon ongoing medical and surgical care after discharge. Should you have any concerns, help and advice is available from the renal team weekdays during business hours. For after-hours enquiries please call the hospital medical registrar (they can also contact the nephrologist on call if necessary).
Clinic visits (the first four weeks)
For the first month or so after your child’s transplant, they will be seen daily as an outpatient in the
Medical Day Unit MDU (5b) on weekdays. On Sundays they will report to ward 10b. Daily blood
tests will be taken and weight, blood pressure and temperature checked. This careful monitoring of your child’s kidney function ensures early detection and treatment of any episodes of rejection.
It is very important that you attend clinic visits as requested by your doctor.
You may often have to wait for an extended time at these clinics, so we recommend you do not make any other plans on these mornings. Please bring all your child’s medications with you. It’s a good idea to check medication supplies regularly as it is very important that you do not run out of medication.
Blood tests after transplants are collected at pathology blood collection on Level 3 of the hospital. If your child has a venous port access, bloods will be taken by the nursing staff on either 5b or 10b. Blood tests are necessary to monitor general renal function, blood counts and the Tacrolimus (medication) levels.
For the first four weeks after the transplant, the level of Tacrolimus in your child’s blood must be monitored. Blood tests are done 12 hours after the evening dose, before your child receives their morning dose. This is called a ‘trough’ level. Changes to your child’s dose of Tacrolimus will be made based on this daily level.
These blood tests need to be done at 8am; therefore you will need to arrive at the pathology collection centre prior to 8am.
Following the 8am blood tests, you will need to wait in either MDU (5b) or 10b until your child is reviewed by one of the doctors on the renal team. Please be aware that sometimes, there will be a long wait to see your doctor.
We will phone you between 4pm and 5pm each day your child is seen at the hospital to tell you their blood test results and advise of any required changes to medication doses. Please phone 5b or 10b if you are not contacted by 6pm. You may find it useful to keep a journal to record this information daily.
After the first four weeks
After four or five weeks your visits will reduce to every second day; then down to three times a week, and so on. Blood tests remain necessary prior to the morning dose of Tacrolimus on these visits. Tacrolimus must be taken immediately after each blood test.
The normal immune response of the body is to try to attack anything it recognises as foreign so as to damage or destroy it. Unfortunately, this includes your child’s transplanted kidney.
In order to prevent this, your child will need to take special drugs called immunosuppressants. These drugs suppress the body’s naturally hostile response to the new organ. You will have been aware that these drugs were prescribed for your child to commence in the hours prior to their surgery.
Our aim is to adjust these drugs to prevent the risk of rejection and to minimise any side effects that may occur. You may find that drug doses change according to the results of your child’s blood tests.
Your child will need to take these drugs every day for the rest of their life to prevent rejection of the new kidney.
If you notice any of the following, please contact the renal team during business hours or the medical registrar after hours at the hospital; immediately:
- a decrease in urine output
- weight gain
- fever/ flu like feelings
- tenderness/swelling of the new kidney
- blood in the urine.
The team will notify your nephrologist and further investigations may be required.
Medications and immunosuppressant therapy
The medications your child is prescribed to suppress the immune system are most important in ensuring long-term survival of the transplanted kidney. Without these drugs, your child’s body will reject the kidney. Over time the doses of these drugs will be reduced to a minimum.
Immunosuppressant medications have a number of possible side effects because the body’s immune defences are suppressed. Your child may experience some but not all of the side effects. Usually, side effects can be managed by adjusting drug dosages or by treating the side effects themselves.
You will learn about all the medications that your child needs to take now whilst your child is recovering following their surgery.
You may be feeling a little overwhelmed at the number, frequency and high dosages of medications that your child is taking in these early weeks immediately following the transplant surgery. However, be assured that these medications will decrease over time as your child’s renal function stabilises.
If your child vomits within 30 minutes of taking their medication, repeat the dose. If vomiting occurs after 30 minutes of taking medication, repeating the dose is not required. If you are concerned or unsure, contact the renal team during business hours or medical registrar out of hours for advice.
It is advisable not to give over-the-counter or natural/herbal medications without seeking advice from the renal team. This includes medications for coughs and colds. These drugs may mask an infection that should be investigated or may interfere with your child’s prescribed medications.
Diet and fluids
The renal dietician will have met with you to discuss specific dietary requirements for your child after discharge.
Do not be surprised if your child’s appetite increases after the transplant. This will be because they are feeling much better due to the return of normal renal function and also a side effect of the medications they are taking. It is important to discourage overeating.
Try to encourage your child to eat a well-balanced diet and avoid foods which are low in nutritional value or high in fat and calories, such as fast foods.
Your child will need to drink plenty of fluids and this may need to be monitored and encouraged in the early period after going home. Try to limit their intake of sweet and fizzy drinks.
Good dental hygiene and care is required as the mouth harbours many bacteria. Your child should brush their teeth two to three times daily with a soft bristled toothbrush. Regular flossing is also recommended. Your child should visit the dentist every six months as some of the drugs they are taking may affect current and future dental health.
Children with renal transplants are not more prone to cavities. However some of the medications are known to cause gum problems.
If any dental work is required, your child may need to take some antibiotics to prevent infection. Be sure to discuss this with your doctor prior to appointments with the dentist.
Wound and peritoneal dialysis catheter care
If your child has a Tenckhoff catheter, you will need to continue to care for your catheter as you were doing at home prior to the transplant. If all goes well your child will be readmitted to hospital in about six weeks to have an operation to remove the catheter.
The wound can be washed with soap and water and gently patted dry. Please inform the renal team during business hours or the medical registrar out of hours if you notice any redness, tenderness, pain or discharge from your child’s wound.
At the time of your child’s transplant a ‘stent’ or small piece of plastic (resembling a straw) may be placed in the ureter (the tube connecting the new kidney to the bladder). The purpose of the stent is to prevent kinks in the ureter and to allow urine to flow freely into the bladder.
The stent will be removed approximately six weeks after your child’s transplant. (If your child has a peritoneal dialysis catheter it will also be removed at the same time).
Sun and skin care
There is an increased incidence of skin cancer following transplantation. Try to avoid/limit your child’s direct exposure to the sun between the high UV hours of 10am and 3pm.
Remember the motto to ‘slip on a sun shirt, slap on a hat and slop on a high SPF sunscreen’ to help lower your child’s risk of future skin cancers.
Reducing the risk of infection
The immunosuppressant medications that your child is taking to prevent rejection of the new kidney will result in your child having a lowered immunity – this means they cannot fight infection in the normal way.
You need to be aware of the following signs and symptoms of possible infection:
- temperature of 37.5oC to 38oC for more than 24 hours
- a flushed appearance, complaints of feeling cold/hot, sweating or shivering
- coughing, sneezing, shortness of breath or tightness of the chest
- diarrhoea and/or vomiting
- blurring of vision, headaches or other visual difficulties
- any redness, swelling and/or pain in your child’s throat, eyes, ears, skin, joints or abdomen
- frequency or urgency in passing urine and/or burning/stinging on urination, and/or smelly, discoloured urine
- redness, swelling, discharge and/or discomfort at the site of the central line, port-a-cath or Tenckhoff catheter.
If you believe your child is unwell, or has a sudden temperature of 38oC or higher, please call the renal team during business hours or after hours, the medical registrar at the hospital immediately.
Infection risk guidelines
- There is no need to disinfect your house! Weekly cleaning and vacuuming are generally adequate.
- Good personal hygiene is important. Please make sure your child washes their hands well before eating, after using the toilet and after blowing their nose.
- Ensure that your child wears shoes outside—if they gets any cuts scratches or splinters, treat by washing the area and applying antiseptic cream. Notify the renal team or medical registrar out of hours if there is any redness or swelling around the wound.
- Discourage people with coughs and colds or other illnesses from visiting in the first few months following transplant.
Getting out and about
It is fine to go out shopping, but try to avoid being in close proximity with other people (e.g. in a lift).
You may also take your child to the movies; just try to avoid the busy times and if possible sit away from other people.
We would discourage you from swimming in public swimming pools within the first six months after your child’s transplant. Swimming in well maintained private pools or at the beach is fine.
If you have a pet
Due to your child’s increased vulnerability to infection, we recommended that they do not clean out pet cages or litter boxes. Discourage them from kissing their pets, letting pets lick their face, or share a bed with them. Always remember to ask your child to wash their hands well after handling animals.
If your child is scratched or bitten by a pet or animal; clean the wound and apply antiseptic cream and notify the renal team if you notice any redness or swelling around the wound.
Returning to school
Due to the increased risk of your child catching an infection, your child may need to stay away from school or kindergarten for approximately six weeks following their transplant. Returning to school is something you will need to discuss with your doctor.
Your child’s appearance may have begun to change due to the medications they are taking. A more ‘rounded’ face and an increase and darkening of body hair may draw comment from peers at school. We would suggest that you speak to your child’s teacher and arrange for them to prepare your child’s classmates before their return to the classroom.
It is important that your child’s school is made aware of the need to notify you immediately of any confirmed cases of chickenpox, shingles or measles.
A renal nurse is available to liaise with teachers and schools and educate them regarding your child’s return to school.
Try to keep in mind that there may be unexpected times where it will be necessary for your child to have time off school.
Chickenpox / shingles / measles
Previous vaccination or a history of infection of chickenpox or measles may not protect your child when s/he is receiving immunosuppressive medication. Exposure is considered to have occurred if children have been playing or sitting together for more than half an hour. Contact must be directly between the infected person and your child. If exposure has occurred, contact the renal team during business hours or, after hours, the medical registrar immediately.
Your child must be up to date with their immunisation schedule for their age. Please discuss this with your nephrologist prior to transplant.
Information about medications
The number of medications that your child has been prescribed can be somewhat overwhelming at first. We realise that managing medication is sometimes stressful and may at times create conflict between you and your child. Here a few tips to make the process a little easier:
- Purchase a dosette box to hold all your child’s required medication for a week.
- Make sure that you always have at least a week’s supply of medication in reserve – have prescriptions filled early so that you do not run out of medication.
- If you miss a dose of medication or if your child vomits within one hour of taking medication please contact the renal team during hours or, after hours, the medical registrar promptly.
The following information about the commonly used transplant medications, explains the reasons they are given, how they are given, and the possible side effects.
Tacrolimus (Prograf) is used to prevent rejection of the transplanted kidney. Tacrolimus is an immunosuppressant that works by blocking some of the functions of the lymphocytes (white blood cells) responsible for identifying foreign tissue introduced into the body. The dose of Tacrolimus needs to be monitored carefully to ensure that neither too much or too little is given. Blood levels which are too low may lead to rejection. However, levels which are too high may also have an adverse effect and cause damage to the new kidney. It is important to take Tacrolimus at the same time each day and always consistently with respect to food (i.e. always one hour before food or always with food). The absorption of Tacrolimus in the stomach can be reduced by up to half if taken with a meal high in fat.
Mycophenolate Mofetil (Cellcept)
Mycophenolate is another immunosuppressant given to reduce lymphocyte or white cell numbers. The dosage of this drug will be adjusted according to your child’s white cell counts. It is also important to take this consistently with food (take with Tacrolimus).
Prednisolone is one of a group of drugs called steroids; which have an anti-inflammatory action and also suppress the immune response by inhibiting antibody production.
It is given in high doses for the first few weeks of the transplant, but is reduced following this to minimise the risk of side effects.
This medication is used to prevent fungal infections of the mouth otherwise known as “thrush”. This type of infection is recognisable by the appearance of white coating on the tongue. Encourage your child to ‘swish’ the nystatin around the mouth prior to swallowing. It is stopped after the steroid dose is reduced to a certain level. If you notice a white coating on your child’s tongue and they complain of a sore mouth, please contact us for advice.
You child may be prescribed Valgancyclovir. Valgancyclovir is an antiviral agent used to prevent infection from the Cytomegalovirus (CMV) and Epstein-Barr virus (EBV or Glandular Fever). It is usually given for three to six months following transplant to patients at higher risk of infection.
Trimethoprim Sulfamethoxazole (Bactrim)
Bactrim is an antibiotic given to prevent Pneumocystis carinii pneumonia (PCP). PCP is a chest infection that occurs primarily in people with weakened immune systems. It is usually given for six months following transplant.
Increased gastric acid production is a common side effect of prednisolone and other immunosuppressive medications. Ranitidine is given to suppress gastric acid production and improve/ prevent symptoms of indigestion and reflux.
Please note: All of these medication have possible side effects. Your pharmacist will go through all of these with you, and give you further information on each individual medication prior to discharge.
Child and Adolescent Renal Service
Queensland Children’s Hospital
501 Stanley Street, South Brisbane
t: 1300 762 000 (8.30am – 4.30pm, Mon to Fri)
Ward Clerk Medical Day Unit (MDU)
t: 3068 1717 (8.30am – 4.30pm, Mon to Fri)
t: 3068 1626 (8.30am – 4.30pm, Mon to Fri)
t: 3068 1721 (8.30am – 4.30pm, Mon to Fri)
After hours, contact the nephrologist on call through the hospital switch
t: 3068 1111
In an emergency, always call 000.
If it’s not an emergency but you have any concerns, contact 13 Health (13 43 2584). Qualified staff will give you advice on who to talk to and how quickly you should do it. You can phone 24 hours a day, seven days a week.