Home

Taken from an information sheet passed out by Patricia Spina, RN, CCRN before her presentation on Pediatric Liver Transplantation at the Greensboro Alpha Conference. This information may be of interest to the adults and the parents of children who are struggling with the alpha condition.

Waiting for Transplant...

First attempt human-liver transplant in a child occurred more than 30 years ago.

Development of antirejection medications (like cyclosporine) in the 1970s made
liver transplantation a more acceptable alternative.

1. Better surgical techniques.
2. Improved preservation solutions.
3. New immunosuppressant agents.

   They are now utilizing split liver procedure and living donor transplants to make if for the shortage of donors. Goals of a liver tx are to prolong life and improve the quality of life. Timing of transplant . . . depends a great deal on the underlying liver disease, the availability of other forms of therapy, the organ supply, and the expected outcome.

U.S. facts about transplantation:

1. Number of patients waiting for liver tx = 15,164.
2. Of these, approximately 10–12% are children.
3. Number of liver transplants performed in 1998 = 4,487.

When will your child need a transplant?

1. Timing is key but there are no absolute guidelines.
2. Best to wait as long as possible without waiting too long.
3. If a child can live much longer without a transplant and still have as good a chance at survival, then a transplant would be to early.

When have you waited too long for a transplant?

1. If something happens to decrease the chance of survival after the transplant.
2. There is no accurate way to predict when these events will occur.
3. Some children will have a good quality of life for many years with “compensated” liver disease, while others will not.
4. Compensated liver disease is when the disease exists but there are either few symptoms or the symptoms are mild and stable.
5. If a child’s overall health is not getting worse it is usually better to wait.
6. A decision will be made in collaboration with your health care team

Listing for transplant:

1. Referral to transplant center for evaluation.
2. Get on UNOS national waiting list.
3. Each center has their own criteria for accepting a patient for transplant.
4. Can list at more than one center.

Organ matching:

1. Organ is donated.
2. Donor’s information is put into UNOS computer.
3. Organ center computer makes a list of patients matching that organ.
4. Recipient hospital is notified of an available organ.
5. Transplant team considers whether to accept the organ.
6. Recipient is notified and comes to transplant center.

1. List is like a “pool” of patients.
2. Each time an organ becomes available, the computer searches the “pool” for the patients matching the organ and a new list is made.
3. Age, blood type and other medical information is included on the list.
4. Match is based on this information, as well as waiting time, and other factors.
5. Patients are ranked in order of their level of match to the organ donor.
6. Patient with the best match is the first person on the list

Pretransplant evaluation:

1. Helps determine if transplant is the best option.
2. Gives clear picture of the overall health status.
3. Helps identify potential problems.
4. Includes lots of testing:
   Chest x-ray
   EKG
   Ultrasound with Doppler of liver
   CT scan/MRI
   Blood tests
   Pulmonary function tests
   Hepatic artery angiography
   Cholanglogram

Operative Ppocedure:

1. Admit to hospital 6–8 hours before procedure.
2. Blood work, chest x-ray, enema, antibacterial cleanses.
3. MC performs physical assessment.
4. May receive sedative before the procedure.
5. Lasts 8–12 hours.
6. Transplant Coordinator will be your liaison to the surgeon and keep you updated during the procedure.

Post-operative course:

1. Admitted to the ICU.
2. Some pain and discomfort—will receive pain medication.
3. Tube in throat to get enough oxygen. Will be connected to a breathing machine called a ventilator.
4. Will not be able to speak.
5. Tube in nose to drain stomach.
6. IV in chest or neck area used for fluids and medications.
7. Catheter in bladder to drain urine.
8. Drains in or near incision.
9. Transfer to floor in 3–5 days.
10. While on floor, will learn medications, signs and symptoms of rejection and infection, how to take blood pressure.
11. Discharge to home in 3–4 weeks.
12. Clinic visits 2 times per week for the first month, then decreased.
13. Back to school/job within 3 months.
14. Able to resume normal activities.
15. Normal well-child care and immunizations.

Transplant average cost:

1. Evaluation: $11,000
2. Candidacy: $10,600
3. Procurement: $ 24,700
4. Hospital: $188,900
5. Physician: $ 42,600
6. Follow-up: $ 26,400
7. Medications: $ 10,300
   Total—$304,960
   Most private insurance companies now cover transplant costs. Medicare and medicaid also cover some costs.

1. More prepared you and your child are, the better the experience will be.
2. Ask questions of medical staff.
3. Write things down to help you remember.
4. Utilize Child Life Specialist while hospitalized.
5. Encourage child to share with friends and classmates.

   Sibl;ings:

1. Very stressful for them.
2. Less attention from parents.
3. Feelings of loss, sadness, anger, jealousy.
4. Separation, loneliness, confusion, isolation, anxiety.

Normal coping mechanisms:

1. Avoidance
2. Minimization
3. Distancing
4. Selective Attention

Ineffective coping:

1. Denial
2. Regression
3. Excessive aggressive behavior.
4. Educate siblings about hospital, transplant, and what to expect.
5. Enlist their help with routine needs, i.e. getting siblings homework, tutoring, etc.
6. Encourage them to talk about their feelings.
7. Support groups.

Top

Updated May 16, 2005