Pediatric Heart Transplantation:
A Practical Parent Guide

PART 9: COMING BACK TO THE HOSPITAL

CLINIC VISITS

Transplant clinic is held on Tuesdays and Thursdays in the Cardiology Clinic (Farley 2).  Clinic visits may take several hours, depending on needed tests, so please try to be on time.  Multiple tests are done at each visit (e.g., blood tests, echocardiograms, cardiac biopsy).  Your child will also be weighed and a careful physical exam will be done.  Your child’s problems and progress are reviewed and any changes in medications or treatment are discussed.

If your child is having a Tacrolimus (Prograf/FK506) or Mycophenolate mofetil (cell cept) level drawn, please do not give the early morning dose until after the blood test is done.  Bring the medication with you to give to your child after the blood is drawn.

We plan routine cardiac biopsies for Tuesday and Thursday morning as an outpatient procedure.  Because we may need to give a sedative for the procedure, please do not give the patient anything to eat or drink after 12:00 a.m.  Some children may require a different guideline for when not to eat/drink, if so we will give you instructions the day or two before the procedure.  We will call you the day before with the time of the biopsy.  If you do not hear from us, please call the office to confirm the time of arrival.  The biopsy usually takes about one hour, and after one or two hours of observation, the patient can go home.

You will be seen weekly in clinic immediately after discharge.  The number of visits and biopsies depends on your child’s needs.  As your child progresses, your visits will decrease.  We will work closely with your pediatrician and cardiologist at home and will try to have some visits or tests done in your community, if possible. 

ANNUAL STUDIES

Once a year, we do a thorough evaluation of all the patients after heart transplant around the anniversary of their operation.  It is important to check your child’s new heart at regular time periods in order to identify possible problems or concerns that may require treatment.  This is very similar to the initial transplant evaluation and usually requires 2 days of tests.  Special tests include a complete cardiac catheterization, biopsy, and coronary angiography (taking pictures of the coronary arteries to check for narrowing or blockage), EKG, echocardiogram, treadmill stress test and MIBI for patients over 5 years.  Many blood tests are done as well as an eye and dental examinations.  A cardiac MRI may also be done to assess heart function and the coronary arteries.        

COMMON TESTS AND STUDIES

In order to follow your child closely for the complications related to transplant and the chronic medications there are several tests that your child will have.  These tests (many described previously) include:

• Cardiac Biopsy: A cardiac biopsy is a type of heart catheterization that can be done as an outpatient procedure in the cardiac catheterization lab.  Your child is given a sedative, if needed, and a local anesthetic.  A catheter is inserted into a vein (usually in the neck or leg) and directed by x-ray (fluoroscopy) into the chambers of the right side of the heart where pressures are measured.  Then a special catheter with tiny tweezers on the end is put through the catheter and tiny samples of heart muscle are obtained.  The catheter is removed and your child can return to the catheterization recovery room.  The procedure takes approximately 45-60 minutes.  The biopsies are processed and results are obtained several hours after the procedure.

Cardiac biopsies are done on a routine basis to identify for rejection.  They are also performed on an urgent/emergent basis when rejection is suspected.

• Echocardiogram: An echocardiogram usually does not cause any discomfort or pain.  First, a special gel is placed on your child’s chest or stomach area.   Next a small transducer, which looks like a small box with a rubber cover, is placed over the gel directly on your child’s chest, stomach, and towards his/her neck.  The transducer is gently moved in many directions to both see the various parts of your heart, but also to see the direction and speed of the blood as it travels around your heart.   The test takes approximately 45 minutes to 1 hour to perform.  It is performed either in the cardiology clinic or in the catheterization recovery room. 

An echocardiogram obtains information regarding heart muscle function and swelling as well as heart valve function.  Fluid collections around the heart called pericardial effusions can also be detected.  Problems in these areas are indications of rejection.

• Chest x-ray: Chest x-rays are special pictures taken of the chest.  They are performed in the Radiology Department.  They are done often after transplant to check for lung infections, fluid collections, and heart size.

• Electrocardiogram (EKG):  An electrocardiogram is a noninvasive test to look at the electrical activity of the heart (the heart rate and rhythm).  Special leads (or stickers) are placed on the chest to record the heart rate and rhythm.

• Blood tests:
• Complete blood cell count (referred to as “CBC”): The test includes measurements of white blood cell count, hemoglobin, hematocrit, and platelets.  These tests check for infection, anemia, and side effects of medications.
• Electrolytes: Measures the chemicals in the blood (sodium, potassium, chloride) and monitors kidney function (BUN, creatinine).
• Tacrolimus and Mycophonolate Mofetil levels: Measures the amount of Tacrolimus or Mycophenolate mofetil in the patient’s blood.  This blood test is done just before the dose is given (the trough) when it is at the lowest amount in the blood stream.
• Yearly bloodwork:  On an annual basis extensive bloodwork is done.  It is done at the time of the yearly cardiac catheterization to minimize blood draws. In addition to standard bloodwork, yearly bloodwork includes liver function tests, thyroid function tests, cholesterol screen, and a surveillance of viral titers.

• “Yearly” Cardiac Catheterization:  A “yearly” cardiac catheterization is performed at the first anniversary appointment and then at certain time periods thereafter.  It is performed as an outpatient procedure in the cardiac catheterization laboratory.  An intravenous line (IV) is placed.  A sedative is used, if needed.  Local anesthetic is used.  A catheter is placed in a vein and an artery in the leg. The catheters are advanced into the heart using special x-ray (fluoroscopy).  Pressures are measured in the heart and pictures are taken of the coronary arteries (the vessels that sit on the outside of the heart and supply the heart muscle with blood).  A cardiac biopsy is also performed.  The procedure takes approximately 60-90 minutes.  The patient must lie flat for 6 hours after the procedure in the cardiac catheterization recovery room.

• Exercise test with myocardial perfusion scan (MIBI scan):  The MIBI scan is a multiple part test to help identify coronary artery disease.  It is performed either at the Brigham and Women’s Hospital or at Children’s Hospital.  It is performed on an annual basis in children over the age of 5. 

The test is performed in the Nuclear Medicine Department and takes several hours to complete.  An intravenous line (IV) is placed.  A tracer is then injected into the IV.  The tracer allows visualization of the coronary arteries and how they supply the heart muscle with oxygenated blood.  The patient is then asked to lie on a special table with his/her arms above his/her head.  The patient must lie very still for about 20-25 minutes.  Cameras above the table take pictures of the heart.  After completion of the first part the patient is then given a 30-45 minute break.  The second portion of the test starts in the Exercise Laboratory in the Cardiology Clinic.  EKG leads are placed on the chest.  A blood pressure cuff is placed on one arm.  The patient is then asked to walk/run on the treadmill at an increasing pace and incline.  After several minutes, the exercise physiologist will then inject the tracer into the IV.  The patient will then “cool down” and return to the Nuclear Medicine Department for the last set of pictures.  

• DEXA scan: This test detects bone thinning (osteoporosis) secondary to the use of long-term prednisone.  The test is a special type of x-ray.  The test does not require an IV and is not painful.  The patient does need to stay still for a short period of time so it is not performed in the small children.

• GFR Scan:  This test is an assessment of kidney function.  It is a multiple part test that is performed in the Nuclear Medicine Department.  It requires an injection of a medication and several blood draws.  It takes several hours to complete and cannot be combined with many other tests. 

Note to all families from the United Network for Organ Sharing (UNOS):

The United Network for Organ sharing provides a toll-free patient services line to help transplant candidates, recipients, and family members understand organ allocation practices and transplantation data.  You may also call this number to discuss a problem you may be experiencing with your transplant center or the transplantation system in general.  The toll-free patient services line number is 1-888-894-6361.