Life Post-Transplant – What's Next?
What happens in the weeks following the transplant?
Patients typically need twice to trice-weekly blood tests during the first 4-8 weeks after leaving the hospital and less frequently thereafter. Transplant recipients from out-of-town are typically asked to stay near the transplant center for at least eight weeks of testing. A pediatric nephrologist and the transplant coordinator will review the blood test results and, if necessary, make medication adjustments and answer specific questions patients and their families might have. The transplant team will also educate children and their families on:
- Good hand-washing technique
- Adequate fluid intake
- Regular toileting schedules
- Diet and exercise
What happens once children and families return home?
As with any surgery, it will take some time to get fully recovered and back into regular activities. In addition, the immunosuppressant regimen is most intense in the weeks directly following the surgery so most children do not return to school for a month or so as they would be overly susceptible to any germs or illnesses. Some children may also require a transition period to get back into full days of school, depending how fatigued they may feel. While children should resume participation in physical education classes gradually, over time, most children should be able to participate in school, play sports and feel energetic.
In fact, energy and activity can improve so dramatically that parents often express concern their child has become hyperactive or participates in aggressive play that may seem too rough. Parents need to be prepared to set reasonable limits on their child's play. Because this task may be difficult, pre-operative discussions about physical activity limitations with the transplant team and your child may be helpful.
Physical therapy may also begin while your child is in the hospital. A physical therapist will work together with you and your child to develop a program that helps achieve developmental milestones.
Are there any special arrangements/preparations parents should make for the return home?
If the child’s bedroom is upstairs, some might be more comfortable making a bed on the ground floor where stairs are not involved until the abdominal incision has healed a bit. As for bathing, it’s important to keep the incision dry.
What are the signs a child’s body may be rejecting the new kidney?
In the past, symptoms of rejection included the following:
- Pain or tenderness over the transplant site
- Flu-like symptoms such as chills, nausea, vomiting, diarrhea, tiredness, headache, dizziness and body aches and pains
Because immunosuppressants have become much stronger they tend to mask any physical signs of rejection, symptoms such as the following are LATE SIGNS!
- Change in pulse rate
- Weight gain
- Less urine
Only regular blood tests can reveal rejection in a timely fashion, allowing for medical intervention and salvage of the kidney.
How long will the transplanted kidney – the new healthy one – last?
On average, transplanted kidneys last 10 to 12 years. According to the latest data from the Organ Procurement and Transplantation Network,
- 95 percent of children who receive a kidney transplant have a functioning kidney after one year.
- After three years, that rate is about 85 percent.
The percentages provided are average statistical values. Infants and young children tend to have much better kidney transplant survival times than adolescents. This is mainly due to the difference in compliance with the medication regimen in the two groups.
What can be done to help the transplanted kidney last as long as possible?
Transplant recipients of every age should always maintain regular scheduled doctor appointments and take all prescribed medications on time. They should also be aware of ways to combat germs and be sure to call their doctors at any sign of infection. Because the risk of bacterial and fungal infection is greatest in the first few weeks after your surgery, it may be necessary to take the following precautions:
- Avoid indoor crowded places like stores, movies, restaurants and churches in the first few months after transplantation
- Avoid people with known infections or illnesses
- Avoid taking care of animals
- Avoid working outside or in your garden
- Wash your hands frequently--it's a safe and effective way to stop some infections before they start
- Good dental care is important-brush and floss daily, see the dentist regularly, antibiotics may be necessary before routine dental cleaning
- Cleanse cuts or scrapes and apply a clean, dry dressing-contact your doctor if you notice fever, pain swelling or redness
- Avoid buildings under construction or destruction
How often should a child with a transplanted kidney get checked out by a doctor and for what?
The child with a transplanted kidney will always have regular doctor appointments to test for levels of medications, kidney function, and all other blood levels that help indicate the health of the transplant. Blood pressure and growth will continue to be watched closely. If there is a question about how well the graft is doing or there is a rise in the creatinine/GFR levels, a kidney biopsy may be ordered to get a closer look.
What type of doctor should a child see after a kidney transplant?
Most children who have undergone a kidney transplant continue to work with a pediatric nephrologist until they are 18 or older. At this point, they are transferred to a transplant nephrologist caring for adults.
What kinds of medications does a child take after a kidney transplant?
For the most part, all transplant recipients need life-long treatment with immunosuppressant medicines to prevent rejection of the transplanted kidney. These medications must be taken daily following surgery. Like so much else, the protocol of immunosuppressant medications varies with each hospital. There are certainly more medications at the very beginning; after a couple of months, the regimen will get more solidified as levels are determined. Most children start on two to three immunosuppressants in addition to a prophylactic antibiotic and possibly other medications. Blood pressure medications are not given unless blood pressure continues to be a problem even post- transplant, which it is for some. Children put on steroids may react with huge appetites.
What else should parents know or expect about medications for their child?
- Understand that there may be many different types of medications that need to be taken more than once a day
- Realize that managing medication is stressful and may create conflicts with your child
- Become familiar with the names of the medications, the reason for their use and how they are given.
- Tell the transplant team if any of the medications bother the child so they can plan the best combination of medicines.
- Provide age-appropriate support and supervision to assure that medications are taken as prescribed.
Other recommendations include:
- Develop a system that is easy to follow.
- Make sure you have enough medication at home and get prescriptions filled early so you don't run out.
- Stay with one pharmacy. If your insurance only covers generic drugs and there is a change in the company providing the drug to the pharmacy, your child will need to undergo blood tests to ensure that there is no significant change in the blood drug level.
- If your child misses a dose of any of the medications, for any reason, notify the transplant team coordinator or your transplant physician.
- Because many medicines interact with transplant medicines and may increase side effects or make the transplant medicine weaker so the child is at greater risk of rejection, never give your child new medications until you discuss it with your transplant team. That includes over-the-counter medications and herbal supplements.
How will my child’s growth be affected by the transplant?
As a part of feeling well, a transplanted child's appetite will likely improve dramatically. This change can be very confusing to the children and their parents unless clearly discussed prior to transplantation. In fact, parents of children who have already had a kidney transplant – especially those who have been put on steroids – suggest locking up the cupboards and watching what food is in the house! This huge increase in appetite should settle down as the dose decreases; however, children with new healthy kidneys often gain a better appetite and a few inches and pounds. Growth, which may have been previously slow, can really take off.
In addition, because immunosuppressant medications may cause weight gain, salt retention, potassium loss, high blood sugar and high blood pressure, it is often helpful to work with a nutritionist to design an appropriate diet plan for your child. Talk to your doctor about your child's specific needs.
On the other hand, while many kids will start to grow well and even catch-up post transplant, some do not. Doctors may wait a year however before considering (re)starting a child on growth hormone.
Do children have a difficult time adjusting to the transplant socially and emotionally?
Parents and doctors agree social adjustment/readjustment can be a huge issue for children following transplantation, although this varies from child to child. Every effort should be made by both the parents and the transplant team to identify if a child is having problems coping with their changes and fears following transplantation. Here’s how:
- Parents and doctors need to reassure the child that physical changes which typically occur from the steroids, will improve with time.
- Parents can help their child manage these differences by planning ahead with the school.
- Parents should emphasize the child’s good physical attributes.
- Parents should stress that the long-term outcome of many of the physical changes will be minimal.
Additional advice for parents and other caregivers:
- Focus on the joys and accomplishments of today.
- Join a support group or form a relationship with a family facing a similar situation.
- Research and ask questions to learn all you can about your child's condition and potential therapies.
- Be easy on yourself when you've had a bad day.
- Learn about your child's special financial and educational needs.
- Don't be afraid to ask for help.
- Schedule and spend special time with your spouse and other children.
Should parents worry about their children in the sun?
Sun sensitivity is one of the more common side effects associated with some immunosuppressants, so it’s important to protect your child from exposure to the sun. Sunscreen, hats and shirts should be used when outside for any period of time in the sun.
Is it OK for children to be around pets?
It is important that you discuss plans for new pets with your transplant team. In addition, due to the higher risk of infection, it is not recommended for your child to be cleaning pet cages or changing litter boxes.
How soon can families take a vacation or trip?
Due to complex follow-up care, it is important that your family not make any travel plans for the first three to six months after the transplant.
What other issues might children (or parents) have to deal with later in childhood or life because of the transplant or medications?
- Problems, such as delayed puberty arise from he chronic kidney disease. Just like stunted growth, this is not always reversed by transplantation. An endocrinologist can be consulted to help improve the body image of the adolescent by providing hormones that make him or her “look like other kids my age”.
- Some of the medications interfere with reproduction or may be dangerous for the unborn child. It is important for the patient to discuss this with the doctor and make the team aware of his/her interest in having children in the very near future (within one year). Doctors should work closely with the mother to find the right medications to manage their pregnancy.