4 AnswersJames Januzzi, Cardiology, answeredWhile heart transplantation has given a new life to patients with end stage heart disease, it does come with significant down-sides, one of which is the accelerated coronary artery disease that we occasionally see in transplant recipients. Known as coronary allograft vasculopathy, such accelerated disease manifests as diffuse narrowing of the arteries in the transplanted heart, and may lead to heart attacks and graft failure. Numerous reasons exist as to why allograft vasculopathy forms, but at present there are no specific therapies that either well-prevent it or treat it once it develops.
Suppressing the immune system decreases the chances of the body’s rejecting the new heart or heart-lung, but it also decreases the body’s ability to fight infection.
These steps will reduce the risk of infection while in the hospital:
• All family members and personnel should follow strict handwashing procedures.
• The number of visitors should be limited and screened for any active illnesses.
• Your may need to wear a mask when you’re well enough to leave your room.
These are also good guidelines to follow when you first get home from the hospital.
This is likely to be a stressful time for you and your child. He may share your emotions, but show them in different and unpredictable ways. Throughout this process, your child may not feel well and this adds to his fears or frustrations. His reactions will vary based on age, but here are some general suggestions to help alleviate some stresses and fears:
•Keep his lifestyle and daily activities as normal as possible.
• Tell your child it’s okay to talk about difficult thoughts and feelings. That’s what families are for!
• Explain that he will be going to the hospital to get help for his illness.
• Let your child talk to nurses, doctors or social workers, and tell him these people can help him with his feelings, too.
• Avoid overprotecting your child by keeping important information from his. Children are quick to pick up on non-verbal cues, and often their imaginations “fill in the blanks” if they don’t understand.
• Provide opportunities for young children (under 12) to “play hospital” with dolls or stuffed animals.
• Encourage him to make a list of questions to ask people at the hospital.
• Plan family activities while waiting for the operation.
•Make a list of things to take to the hospital, such as a favorite toy.
• Assure your child that you will be with him when he goes for the operation and when he wakes up.
• Select books for you and your child about going to the hospital and about illness and discuss them.
• If applicable, let your child’s teacher know how long he will be out of school, and that sending homework to the hospital will help your child feel a part of things, focus on this normal life activity and make returning to school easier.
The waiting period is a good time to make preparations like arrangements for housing and child care, if necessary; notifying your employer of your situation; and getting your financial and insurance paperwork in order.
From a medical perspective, it is strongly recommended that you keep your child current on his immunizations. Good nutrition is very important before transplant surgery and immunosuppression. Let your child’s transplant team know if your child’s medical status changes.
For heart-lung transplant recipients, the one-year survival rate is 70 percent and the three-year rate is 50 percent. Rejection and infection are the primary causes of death.
The survival rates after a heart transplant alone are higher. Currently, 90 percent of all patients receiving a heart transplant survive one year and 75 percent live five years. Most heart transplant recipients return to work or school and lead active lives. Associated deaths result from rejection, infection and accelerated coronary artery disease.
We expect these rates to improve over time. New medications and therapies, our ability to learn about the body’s response to donor organs and to recognize early signs of rejection are all brightening the outlook for transplant recipients.
Heart transplants may be indicated for children with certain conditions such as:
•Dilated cardiomyopathy- A condition in which the heart becomes enlarged and weakened
•Hypoplastic left heart syndrome - A congental condition in which the left side of the heart is severly underdeveloped
•Anomalous left coronary artery - heart defect in which the left coronary artery is connected to the pulmonary artery instead of to the aorta
•Ebstein’s anomaly - A rare defect of the tricuspid valve
Heart-lung transplants may be indicated for a child with cystic fibrosis, primary pulmonary hypertension or Eisenmenger’s syndrome. Because of the difficulty of heart-lung transplant surgery, children who have had previous chest surgery generally do not qualify. This restriction does not apply, however, to heart transplants.
Usually a transplant is recommended when survival without it is expected to be less than one year. This procedure is a last resort when medications and routine surgeries have not helped. All patients must go through a thorough evaluation before being placed on a heart transplant waiting list.
There are special considerations for children on the waiting list. Availability of donors for heart transplantation is affected by the size of the child needing the transplant. For instance, an adult donor heart cannot be transplanted into an infant because the infant's chest is simply too small to accommodate the large organ. Children must wait for an appropriately sized organ to become available. However, as of May 15, 2000, new United Network for Organ Sharing (UNOS) guidelines were established to give preference to children under 18 on the waiting list before adults whenever a heart from an adolescent donor (ages 11 to 17) becomes available.
There is no definitive answer to this question. After being approved for transplantation, patients are immediately put on the United Network for Organ Sharing (UNOS) waiting list. How long one must wait for a heart depends upon a number of factors, including how well the organ matches, based on blood type, body size, and the length of time on the list. Additionally, there are three status levels based on specific criteria so that the sickest patients have highest priority for the potential heart.
A major problem affecting the availability of hearts for transplant is that these organs cannot come from living donors. Kidney transplants often come from a living donor; both the person who donated a kidney and the recipient are able to live with just one remaining kidney. New techniques are making it possible for some people in need of a liver transplant to receive part of an organ from a living donor; both the recipient and the donor may be able to live successfully with just a segment of a liver. However, an entire heart is needed for a human to live. Neither donor nor recipient can live with only a segment of a heart. Therefore, people in need of a heart transplant must wait for the death of a person who generously decided to share his/her organs.
There are special considerations for children on the waiting list. Availability of donors for heart transplantation is also affected by the size of the child needing the transplant. For instance, an adult donor heart cannot be transplanted into an infant because the infant's chest is simply too small to accommodate the large organ. Children must wait for an appropriately sized organ to become available. However, as of May 15, 2000, new UNOS guidelines were established to give preference to children under 18 on the waiting list before adults whenever a heart from an adolescent donor (ages 11 to 17) becomes available.
Once you receive a call that a donor heart is available, you should proceed to the emergency room for final evaluation and admittance. Once the transplant surgeon agrees that the heart is a good match, you will be prepared for surgery. The following is a typical scenario:
• The physician will make an incision down the center of the chest from just below the Adam's apple to the end of the sternum, at the upper end of the abdomen.
• The sternum (breastbone) will be divided in half with a special operating instrument to expose the heart.
• Tubes will be inserted into the chest so that the blood can be pumped through your body by a cardiopulmonary bypass machine (heart-lung machine).
• Once the blood has been completely diverted into the cardiopulmonary bypass machine for pumping, the diseased heart will be removed.
• The donor heart will be sewn into place. Once the new heart is in place, blood vessels will be connected.
• When the transplant procedure has been completed, the blood circulating through the cardiopulmonary bypass machine will be allowed back into the heart and the tubes to the machine removed. The heart will be shocked with small paddles to restart the heartbeat.
• Once your new heart begins to beat again, the physician will observe the heart to assess its function and to make sure there are no leaks where the blood vessels are connected.
• Temporary wires for pacing may be inserted into the heart. These wires can be attached to a pacemaker and your heart can be paced, if needed, during the initial recovery period.
• The sternum will be rejoined and sewn together with small wires.
• The skin over the sternum will be sewn back together. The incision will be closed with sutures or surgical staples.
• Tubes will be inserted into your chest to drain blood and other fluids from around the heart. These tubes will be connected to a suction device to drain fluids away from the heart.
• A sterile bandage/dressing will be applied.
An uncomplicated surgery takes about six hours. The patient goes to the intensive care unit after surgery and then to the transplant unit for recovery. Typically, the length of stay for uncomplicated heart transplant patients averages seven to ten days.
The transplant team, including surgeons, cardiologists, nurses, dietitians and social workers, follows transplant recipients throughout their recovery. Early after transplant, you and your family will be given important information and guidance about your medications and life after transplant.
Typically, patients are seen as needed in an outpatient clinic. They are seen quite frequently early after transplant and then less frequently as they improve. You may expect to have the following tests and evaluations to monitor organ rejection and overall functioning:•complete physical examination
Arrangements often can be made for blood drawing and medication management through a patient's primary care physician.