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After you go home, a home health nurse may come to visit your child for the first couple of weeks. He or she will help with routine blood tests, check your child's incision for infection, change bandages, review your child's medicines and provide other care. If have any questions, please call your transplant coordinator.
Blood test results
Follow-up visits
Biliary stents
Healing after surgery
Future dental work
Transplant medicines
Possible complications after transplant
Check your vital signs regularly
Normal laboratory values
Blood test results
When your child first goes home, your child will need to have his or her blood checked two or three times a week. This will decrease over time to blood tests every other month. Your child will need blood tests for the rest of his or her life. This will tell us how well your child's liver is working. Just
because your child feels well does not mean that his or her liver is healthy.
You will need to write your child's lab results in a log book and call them in to the transplant office. The transplant coordinator will call you if there are changes or concerns. If you do not give us your child's lab results, we will not know if your child's liver is working well.
Follow-up visits
Your nurse will arrange for your child to see a doctor at the Transplant Center one week after you take your child home. At that time, the surgeon will check your child's incision, drains, medicines and pain control. You will also meet with your child's transplant coordinator. You must bring your child's medicine card and patient handbook to this appointment.
You will return to the clinic again in a couple of weeks. After that your child must return three, six, nine and 12 months from the date of the transplant, and then once a year for the rest of his or her life. Your child will be seen more often if he or she has any special problems.
Please remember to schedule your child's yearly visits. You will not be reminded. If you live far from the Transplant Center, your child may have some of this follow-up with your family doctor. However, you must always stay in close contact with your transplant team.
Please remember to take your child to see your family doctor every year. Your doctor will check your child's heart, blood pressure, cholesterol and general health. The Transplant Center will provide care for your child's new liver.
Biliary stents
If your child has a biliary stent, he or she will likely have it for six weeks to three months. Your child's surgeon will tell you when the stent should come out. If your child has an internal stent, it may pass out of your child's system in his or her stool without your child even knowing it. Your child will have an X-ray about six weeks after surgery to see if this has occurred. If the stent is still in place, your child may have an endoscopy to remove it. (An endoscope is a slim, flexible, lighted tube that surgeons use to look at parts of your body.)
Healing after surgery
Your child's energy level will be low when he or she first returns home. Keep in mind that your child just went through a major surgery and will need time to recover. It may take three to six months before your child starts to feel normal again.
Please remember:
- Your child should not lift anything heavier that 10 pounds for at least six weeks after he or she returns home.
- Your child may not feel like eating much at first. Do your best to give your child small meals and snacks throughout the day to maintain his or her weight.
- Some people have problems sleeping. If your child needs to take a nap in the afternoon, have his or her do so. Your child's energy will improve with time.
When your child is feeling better, you may notice the texture and color of your child's skin improve. The jaundice begins to clear and is usually gone in three to four months.
The first year may be difficult. Your child will have many doctor visits and lab tests. Taking medicines, having monthly blood tests and watching for problems will soon become your child's lifelong routine.
It is very important for you to take part in your child's post-transplant care. Please stay in contact with your child's transplant coordinator. This will likely improve your long-term outcome.
Future dental work
After your child's transplant, he or she will need to take antibiotic (germ-fighting) medicine before every dental visit.
Transplant medicines
After your child's transplant, the cells in his or her body that fight infection and attack foreign matter will consider the new liver to be foreign as well. These cells can attack the liver. If not controlled, they could cause the body to reject the new liver.
To prevent or control rejection, your child must take anti-rejection drugs (immunosuppressive medicines) for the rest of his or her life. These medicines may reduce the ability of your child's body to fight infections. To prevent some of the most common serious infections, your child will also need to take:
- an anti-fungal medicine for a short time (nystatin, Mycelex)
- an anti-viral medicine for three to six months (valgan-ciclover, acyclovir, ganciclovir)
- a antibiotic for one year (Bactrim, Septra).
Other possible side effects are listed with the drugs listed below. Your child may have more side effects right after the transplant, but these will often go away over time. Regular check-ups may prevent side effects or catch them early so they can be managed.
Your child will take up to three anti-rejection drugs by mouth every day. Your child's transplant doctors will tell you which drugs are best for your child. They will explain the side effects and tell you how to manage them. Your anti-rejection drugs may include:
- Cyclosporine A (CSA; Neoral, Gengraf) or tacrolimus (FK506; Prograf): Your child will need regular blood tests to check the level of medicine in the blood. Blood levels that are too high can cause side effects such as hand tremors, tingling or headache. Long-term use of this medicine can cause kidney problems. Your doctor will watch for this.
- Azathioprine (AZA; Imuran): At first, AZA may cause your child's hair to thin. It can also decrease your child's white blood cell count. We may need to adjust your child's dose to maintain the right white blood cell count.
- Mycophenolate mofetil (MMF; CellCept): MMF may cause diarrhea (loose, watery stools), nausea (upset stomach) and vomiting (throwing up). It may also decrease your child's white blood cell count.
- Sirolimus (Rapamune, rapamycin): This may raise your child's cholesterol and triglycerides (blood fats). It may also decrease your child's white blood cell or platelet counts.
- Prednisone: In high doses, prednisone can cause slow healing. It can also cause increased appetite, weight gain, stomach irritation or ulcers, bloating, high blood sugar, bone and joint problems, sleeping problems, mood swings and depression. Most children are tapered off prednisone in the first three months after transplant.
Possible complications after transplant
While some problems might appear right after surgery, others may show up weeks, months and even years later.
Infection
Signs of infection include:
- Fever over 101°F (38.3°C) (under the tongue)
- High white blood cell count
- Pain or redness at the incision or drain site
Most infections can be treated with medicine from your doctor. If your child gets an infection, it may slow his or her healing process. Please call your transplant coordinator if your child has symptoms of infection.
Obstruction (blocked blood vessel or bile duct)
This may occur right after transplant or many months later. It may or may not be very serious. Your child's transplant coordinator will watch your child's lab results carefully. If there is a change in your child's results, the coordinator will tell you if blockage is a concern.
Rejection
A rejection may occur at any time. It is more likely to occur if your child doesn't take his or her medicines as directed. If your child is having a rejection, it is vital to catch it early. This improves the chances that the problem can be treated. You must send us your child's lab results regularly. If you do not, we will not know that your child is having a rejection.
Your child may feel fine, but blood tests may show higher than normal liver function tests. Some people will have a low-grade fever. But only a liver biopsy will tell us for sure if your child are having rejection. A liver biopsy is a simple test that can be done in the clinic. The transplant team often gets the results back on the same day.
If your child has a rejection, his or her medicines will be changed. If the rejection is severe, your child may need IV medicine in the clinic. The risk of rejection lessens with time, but it never totally goes away. As this risk decreases, so will your child's doses of anti-rejection medicines. Some medicines may be stopped entirely. You will notice that as your child's medicines decrease, most of the side effects will get better as well.
If your child ever stops taking his or her medicines, your child's body may reject the new liver. This could be life threatening.
Organ failure
There is always a chance that your child's new liver will not work. Also, if a disease caused your child's own liver to fail, it may come back and damage your child's new liver. We will watch closely for this.
Cancer
Taken over many years, your child's anti-rejection drugs may increase your child's risk of cancer, especially skin cancer. For this reason, your child should cover up before going out in the sun or use a sun block (at least SPF 15). Do not use tanning beds.
Your child's anti-rejection medicines may also increase your child's risk of lymphoma, a more serious form of cancer. Your child is at an even higher risk if he or she was exposed to the Epstein-Barr virus before transplant and become ill with it after. We will test your child's blood before the transplant to see if he or she is at a high risk.
People who keep smoking after transplant have a higher risk of lung, mouth, tongue and throat cancers. Again, if your child is a smoker, help him or her to stop. Talk to your family doctor if you need help with this.
Kidney problems
Some anti-rejection drugs can be hard on the kidneys. It is important to send us your child's lab results so that we can watch for changes. If your child's lab tests show these problems, we will change your child's medicines. it is not uncommon for patients to need extra medicines to help manage their blood pressures temporarily after transplant.
Psycho-social problems
Liver transplant is stressful for both your child and your family. It may lead to depression, body image problems, money problems and troubled relationships. Your child's transplant care team and family doctor can help you deal with these concerns.
Check your vital signs regularly
You will need to check your child's vital signs regularly, both before and after the transplant. You should have the following items at home:
- A thermometer to check your child's temperature. A high temperature or a fever is often a sign of infection. After your child's liver transplant, it may also signal rejection. Report any fever over than 101°F (38°C) (taken under the tongue) to your transplant coordinator right away.
- A scale to check your child's weight. Your child's weight may go up or down a little each day based on fluid changes in the body. Many patients have a poor appetite right after surgery. Eating small meals often will help your child get the calories he or she needs to heal. Months or year later, you may find that your child has a better than average appetite. It is important to avoid gaining too much weight.
- A blood pressure cuff. Many things affect blood pressure, including hormones, medicines, fluid in the body and how well your child's kidneys are working. Your family doctor will help you manage your child's blood pressure after transplant.
Please see your family doctor soon after you take your child home from the hospital. Return once a year for a check-up.
Lab test values
For most blood tests, “normal values” vary from one lab to another due to different testing methods. The values listed here are current at the University of Minnesota Amplatz Children's Hospital since 2001. Some values are “off” or abnormal for persons with liver disease.
You will get to know your child's own normal values, close to these ranges, after the transplant. For a few tests, normal values have not been established, or depend on the child's age.
Hematology blood tests
Hgb (hemoglobin)..................11.5 to 15.7 g/dl
Hct (hematocrit).......................35% to 45%
WBC (white blood count).......4 to 11 x 103/mm3
Platelets....................................150 to 450 x 103/mm3
Liver function tests
AST.............................................0 to 45 u/1
ALT.............................................0 to 45 u/l
Alk p’tase
(alkaline phosphatase)..........130 to 530 u/1
Bilirubin direct (conjugated)...0.0 to 0.4 mg/dl
Bilirubin total.............................0.0 to 1.3 mg/dl
5’ Nuc.........................................0 to 12.0 u/l
Electrolytes and blood chemistries
Na (sodium)...........................133 to 143 mmol/1
K (potassium).........................3.4 to 5.5 mmol/1
C1 (chloride)...........................96 to 110 mmol/1
HC03 (bicarbonate)...............20 to 32 mEq/1
BS (glucose)............................60 to 115 mg/l00m1
BUN (blood urea nitrogen)....5 to 24 mg/dl
Cr (creatinine)..........................0.4 to 1.0 mg/dl
Ca (calcium).............................8.7 to 10.8 mg/dl
Phos (phosphorus).................2.9 to 5.4 mg/dl
Mg (magnesium).....................1.6 to 2.3 mg/dl
Coagulation tests
PT...............................................11.0 to 13.5 sec
PTT.............................................23.0 to 34.0 sec
TT...............................................13.0 to 18.0 sec
INR.............................................0.89 to 1.09
Factor V.....................................70 to 130%
Fibrinogen................................170 to 370 mg/dl
Blood gases
pH..............................................7.35 to 7.45
p02............................................85 to 105 mmHg
PC02........................................26 to 40 mmHg
HC03........................................18 to 29 mmol/L
Other tests
Albumin....................................3.3 to 4.6 gm/dl
Total protein.............................6.0 to 8.2 gm/dl
