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Miami Transplant Institute

Post Pediatric Heart Transplant Care

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After Transplantation

The needs of each patient are individualized based on our current protocols. When you first leave the hospital after heart transplant, you will need to visit the transplant center (about once a week). Heart patients are advised to anticipate staying in the local area for up to three months after their transplant. If they live out of state or the United States mainland, they should anticipate staying locally for at least 1 year after their transplants.

 The recipient of a heart transplant has a wonderful opportunity and second chance at life. In many cases, one's quality of life improves dramatically. It is important for heart transplant patients to take care of the new heart by strict compliance with doctors' orders regarding medication, diet, and exercise. Otherwise, the second chance may be quickly wasted.

Schedule of Follow Up Care after Your Operation

After your transplant, as you are ready to leave the Hospital, you will be given a schedule of appointments for follow up examinations and biopsies with your transplant doctor and nurse coordinator. These appointments are critically important. The examination and diagnostic tests performed during them tell us is there is any indication of rejection and allow us to adjust your medications as needed.

Discharge Instructions

Lifelong follow-up appointments with your doctor are very important after heart transplant. Some of your heart transplant medications can affect your body in different ways. Your doctor will monitor your body's responses after heart transplant and will adjust your medications as needed.

It is important to bring all your medications and your daily log to the doctor at each visit following your heart transplant. The following information should be recorded in your log:

  • Names of medications, dose, and time you take them
  • Daily weight
  • Daily temperature
  • Daily heart rate (pulse)
  • Daily blood pressure
  • Comments, events, or questions you want to ask

This information helps your doctor adjust your medications and care to make your heart transplant recovery as effective as possible.

Keeping in contact with your transplant coordinator

You may need additional appointments with other specialists or doctors on the day of your appointment with your cardiologist. The transplant coordinator will schedule these visits. If you would like to make an appointment that has not been scheduled, please discuss this with your transplant doctor or transplant coordinator.

Notify your transplant coordinator if you have been prescribed any new medications by any other doctors.

Follow-up with other doctors

Prevention and early detection is best. Some of the problems we may be looking for after transplant include hypertension, coronary artery disease, anemia, low white blood cell counts, skin cancers or other types of malignancy. It is important to see the following doctors for regular exams or as they are needed:

Ophthalmologist

You should see an ophthalmologist for annual eye exams including glaucoma and cataract evaluations. Eye doctor appointments are important, since prednisone can cause vision changes.

Gynecologist

Female patients should visit a gynecologist yearly for a pelvic examination and PAP smear, regardless of age. Mammograms should be performed regularly, as recommended by your doctor.

Internal Medicine or Family Medicine Doctor

Visits will allow your doctor to become familiar with the transplant process and handle issues not directly related to your transplant t=care.  Male patients over age 50 years should have an annual PSA (prostate specific antigen) blood test.

Dentist

Regular follow-up appointments with your dentist are important. Your gums may become swollen and bleed easily. Tell your dentist about your transplant so antibiotics can be prescribed for any dental procedure.

Dermatologist

Wear sunscreen, protective clothing and a hat when outdoors because of an increased risk of skin cancer. If you notice any unusual skin growths, darkened spots or bumps, see a dermatologist as soon as possible. You may also want to consult a dermatologist if acne is a problem for you after transplant.

Rejection, Immunosuppression and Infection

You will be taking multiple medications, some of which are immunosuppressant medications which prevent the body from rejecting the heart. These medications are needed for life. Stoppage of these medications would lead to death.

Endomyocardial biopsies – used to diagnose rejection within the heart – are done as an outpatient procedure which lasts about a half-hour. They must be done weekly in the early posttransplant phase. As time goes on, the biopsies are spread further apart, and only a yearly biopsy is performed.

Some degree of rejection during the posttransplant period is normal and somewhat expected. Adjustment of medications may be made and/or IV medications used to treat the rejection. Rejection is very treatable if detected early. This is why frequent biopsies are performed.

Rejection is not a disease; it is the normal reaction of the body to a foreign object. Rejection can be acute or chronic.

  • Acute Rejection - This rejection occurs in the first weeks to months after transplant. Acute transplant rejection is an expected part of the recovery process and can develop at anytime. To allow the donor organ to successfully live in the body, medications must be given to trick the immune system into accepting the transplant and to not think of it as a foreign object.
  • Chronic Rejection - This rejection occurs later after the transplant. It is somewhat common and develops more gradually and can go on for months or years. It often presents like coronary artery disease. Preventing and treating acute rejection may reduce the possibility of chronic rejection.

Since rejection is caused by the immune system, we call methods to prevent it immunosuppression. Many of the medications given to patients are to prevent this antigen-antibody reaction from occurring. All patients have a medication plan uniquely designed for them and may use different immunosuppressive combinations and dosages at various times. The ideal goal of an individual medication plan is to hold back organ rejection while reducing drug toxicity and the risk for infection.

Infection

Because there is an increased risk of infection  from immunosuppressant medications, heart transplant patients must practice excellent hygiene, maintain good dental care, and be vigilant about exposure to infectious diseases. The transplant team provides thorough instructions about all of these issues, including skin care, and how to avoid infection.

When to Call the Transplant Team

It is up to you to recognize the symptoms of infection and get treatment as soon as any of these symptoms occur.

Note: Prednisone can mask the usual signs of infection so make sure you get treatment promptly. Don't wait!

Call your health care provider right away if you notice any of these symptoms:

  • Fever over 99.5 degree
  • Record your temperature once a day to help you quickly detect a fever.
  • Sweats or chills
  • Feeling "lousy" or flu-like symptoms (chills, aches, headaches or feeling a decrease in your energy level without any obvious cause)
  • Skin rash
  • Pain, tenderness, redness or swelling
  • Wound or cut that will not heal
  • Red, warm or draining sore
  • Sore throat, scratchy throat or pain when swallowing
  • Sinus drainage, nasal congestion, headaches or tenderness along upper cheekbones
  • Persistent dry or moist cough that lasts more than 2 days
  • White patches in your mouth or on your tongue
  • Nausea, vomiting or diarrhea
  • Trouble urinating: pain or burning, constant urge or frequent urination
  • Bloody, cloudy or foul-smelling urine

Types of Infections

Because you are taking immunosuppressant medications, certain viruses or bacteria which are normally harmless can cause you to become sick. These are called "opportunistic infections." The types of infections include:

  • Bacterial
  • Viral
  • Fungal
  • Other (pneumocystis and tuberculosis)

Bacterial Infections

  • Bacterial infections are the most common types of infections that can occur after transplant. Bacteria are found on the skin or in body cavities. Normally, these bacteria do not cause problems, but may lead to infections when you are taking immunosuppressant medications.
  • Bacterial organisms include staph, strep, and pseudomonas, among others.
  • Bacterial infections may occur at any site within the body including the blood, lungs, urinary system, and incisions. If a bacterial infection is suspected, you will need to come to the hospital for blood, urine, and sputum cultures.
  • A culture involves taking a sample of your blood, urine, or sputum (phlegm). The sample is evaluated under a microscope 24, 48, and 72 hours after it is taken to detect evidence of any bacterial growth. If bacterial growth is found, it is identified and tested against the panel of antibiotics to determine which antibiotic is effective in killing that bacteria. You will start taking an antibiotic either by mouth or intravenously (IV), depending upon the severity of the infection.
  • It is very important to finish all of the prescribed antibiotics, even if you are feeling better after a few days. If all of the antibiotics are not taken, some of the bacteria may not be killed, and will continue to multiply, causing another infection that may be resistant to the original antibiotic.

Viral Infections

  • Viruses are the most common cause of infections in transplant patients after the first month. Viral infections include:
  • CMV (cytomegalovirus)
  • Herpes (simplex or zoster)
  • Hepatitis
  • During the pre-transplant screening, you were tested for previous exposure to CMV, herpes, hepatitis, and HIV (AIDS virus). 
  • Having active hepatitis or HIV would prevent you from being a candidate for transplant. Testing positive for previous exposure to hepatitis B or C would not prevent you from being considered for transplant if there is no liver damage present.

CMV (cytomegalovirus)

  • CMV is a common infection following heart transplant, accounting for about 25 percent of all post-transplant infections. More than half of all Americans have had previous exposure to CMV, a benign illness, causing flu-like symptoms. If you or your donor had prior CMV exposure, you will be given a combination of intravenous gancyclovir and oral acyclovir for the first three months after transplant to prevent CMV infection from occurring.
  • When you are taking immunosuppressant medications, CMV may cause a more serious illness resulting in hospitalization. Symptoms can range from feeling "lousy", fever, chills, diarrhea, abdominal pain, headache, cough, or flu-like symptoms. Call your doctor if any of these symptoms occur.

Herpes

  • The herpes virus may affect as many as 40 percent of the transplant population. Once you have herpes, it lives in a dormant state in your body. Sometimes, it becomes active and most commonly presents itself as a cold sore or fever blister on your lips, esophagus, genital area or anus. If you have had a herpes sore in the past, you will most likely have one again, often in the same place.
  • The herpes virus can also appear as "shingles." Shingles are painful blisters along the pathways of nerves on the surface of the skin. The most common sites are the chest, sides of abdomen, and face.
  • Avoid anyone with active chicken-pox. It can cause a more severe infection in transplant recipients who were never exposed to the virus, or it may cause shingles in those who previously had chicken-pox.
  • Herpes is not life-threatening, but it can be uncomfortable. To prevent a more serious infection, take your herpes medication (Acyclovir) at the first sign of a herpes sore. Acyclovir may be given intravenously, by mouth, or as a topical cream, depending upon the severity of the illness.

Hepatitis

  • There are several types of hepatitis: Type A, Type B, and Type C.
  • Hepatitis may be contracted through hepatitis-contaminated blood, body secretions, dirty needles, food, contaminated water, sexual intercourse or exchange of body secretions.
  • Symptoms of hepatitis include:
  • Jaundice (yellowing of the skin)
  • Nausea
  • Vomiting
  • Abdominal pain
  • Fever
  • Weakness
  • Fatigue (feeling over-tired)
  • Treatment of hepatitis is difficult, and prevention is best.
  • Some patients may receive a heart from a donor who tested positive for hepatitis B or C, but who had no symptoms or clinical history of hepatitis. In this case, special follow-up after transplant may be required.

HIV

  • HIV is the virus that produces AIDS (acquired immune deficiency syndrome). The HIV virus may be contracted through sexual contact (heterosexual or homosexual), contaminated blood products, intravenous drug use with contaminated needles, or from mother to child by way of the placenta or birth canal.
  • There is an extraordinarily small chance that HIV virus may be contracted through an organ transplant. All blood, organ, and tissue donors are thoroughly screened for HIV infection through a careful screening of medical and sexual history and by blood testing. The history of the donor is obtained as completely as possible because blood testing may not be 100 percent sensitive for the virus.
  • Although there is a very small chance that you could contract HIV through an organ transplant or blood transfusion, you must know that every precaution has been taken to assure that the organ and blood are safe. Every effort is made to select donors who will not transmit infection. The transplant team always attempts to make recommendations in your best interest.

Fungal Infections

  • Fungal infections may range from very mild (thrush) to life-threatening. Examples of fungal infections include:
  • Candida
  • Aspergillosis
  • Histoplasmosis

Candida

  • Candida is a yeast that grows in moist areas of the body, such as the mouth, arm pits, groin or genital area. Candida is also known as thrush or monilia.
  • When it occurs in the mouth, it looks like white, fuzzy patches over the roof of your mouth, on your tongue, your throat, or in your esophagus (the tube that goes from your mouth to your stomach). It can be treated with a mouthwash (Nystatin) or troches (Mycelex).
  • When it occurs on the skin, candida can be treated with several types of lotions or creams.
  • Women can get yeast infections in the vagina. Vaginal yeast infections cause itching and drainage that is white, lumpy and foul smelling.
  • If Candida spreads inside the body, it can become a more serious infection, requiring intravenous treatment with antifungal medications such as Amphotericin B.

Aspergillosis

  • Aspergillosis may be contracted by breathing fungal spores in damp, dusty places such as attics, basements, barns, or constructions sites.
  • Care should be taken to avoid these places, or if necessary, wear a face mask in those areas.

Histoplasmosis

  • Histoplasmosis is an air-borne fungal disease found in bird droppings.
  • Transplant recipients should avoid exposure to bird droppings, especially in enclosed areas.

Other Infections

 

Pneumocystis

  • Pneumocystis is a pulmonary (lung) infection that occurs mainly in patients who are taking immunosuppressant medications. Symptoms include cough, fever, malaise (feeling lousy), and shortness of breath. Transplant patients are given Bactrim DS every other day for the first year after transplant to help prevent this infection. Patients who are allergic to sulfa drugs may be treated with Pentamidine Aerosol every 4 to 6 weeks, or Dapsone instead of Bactrim.

Tuberculosis

  • Tuberculosis (TB) is a mycobacterial infection that is contracted by breathing infected air-borne droplets. Potential transplant recipients may receive a skin test during the transplant evaluation to determine previous exposure to TB.

Symptoms of tuberculosis include:

  • Pneumonia-like symptoms
  • Cough
  • Coughing up blood
  • Night sweats
  • Fever

Preventing Infection at Home

Your immune system is made up of mostly white blood cells that fight infection. It can also work against your new heart, treating it as an unwanted, foreign object. To prevent this from occurring, you take immunosuppressant medications - to suppress or work against your natural immune system so that rejection does not occur.

However, the same medications that help prevent rejection also increase your risk for infection. For the first 6 months after surgery, the likelihood for rejection is highest, so you will be taking higher doses of these medications. This makes you even more vulnerable to infection. You must take caution to protect yourself from infection.

Remember these points to protect yourself from infection:

  • Take medications as prescribed to prevent or control infections.
  • Take care of cuts or wounds.
  • Practice good dental hygiene
  • Take good care of your skin
  • Wash your hands thoroughly and often
  • Take action to prevent infection by avoiding people who have colds or the flu.
  • Keep your immunizations current.
  • Know the symptoms of infection and when to call the doctor.
  • Be sure your environment is as safe as possible.
  • Eat a healthy, well-balanced diet and follow safe food preparation guidelines.

Medications

You know that after your heart transplant, you will be taking many different medications, each prescribed to you for a specific therapeutic reason. But, what specifically are all these medications? They fall into four categories:

1.      Immunosuppressants

Drugs and agents which shut down your body's natural immune responses that would damage your new heart.

2.      Antibiotics, Antivirals and Fungicides

Drugs that intercede to fend off infection because your natural immune responses are now disabled.

3.      Vitamins, Minerals and Nutritional Supplements

Compounds to aid your body in its efforts to heal and maintain proper functioning.

4.      Coronary-Disease Preventing and Antihypertensive Medications

Drugs to prevent coronary artery disease and regulate blood pressure.

You will be taking the highest amount of medications immediately following your operation. Over the first year, we begin to lower some dosages and possibly discontinue certain medications.

The nurses and pharmacists will explain how to manage your own care. Before you leave the hospital, the team will make sure you are comfortable concerning how to care for yourself. You will receive detailed instructions about your medications (INSERT:  Take Your Medications as Directed) that must be taken every day.

You will also be given detailed instructions on exercise and diet guidelines. A dietician will help you with any dietary questions and a member of the Cardiac Rehab team will guide you through exercise requirements and goals.

A low-fat, low-salt diet is recommended for heart transplant patients. Cardiac rehabilitation is strongly recommended after the transplant. Sexual activity may usually resume four to six weeks after transplant. Anti-rejection drugs pose some risk to fetuses, and thus women transplant patients are advised to seek their doctor's advice and care before becoming pregnant.

After clearance by your doctor, you can, and are encouraged to, return to work. You will still be followed and evaluated annually by our transplant team; your transplant coordinator will be an important part of your recovery.

Lifestyle Changes after Your Operation

The transplant team will continue to be a resource for you and will remain in contact with you, even after you leave the hospital. With this assurance, you can continue your recovery in the comfort of your own home. Heart transplantation can help patients live longer and have a better quality of life. However, you will need to take an active role to help make your transplant a success.

Maintaining Your Optimum Weight

It is important to keep your weight at an optimum and steady level.  This gives your new heart an opportunity to work at its best function. Excess weight increases the work your heart must do to pump your blood to all the cells of your body. Excess weight will also cause stress on your joints and lead to pain; it also stresses your bones, making them more prone to breaking.

The best way to control your weight is with proper diet and exercise. After transplantation, diet becomes a very important part of your life. The drugs you take to prevent rejection have several side effects which make a "heart healthy" diet a necessity. The transplant and your physician work with you to develop a healthy and controlled eating plan to help you maintain your optimum weight.

Caffeine, Alcohol and Tobacco

These commonly-used substances will need to be eliminated or severely restricted in your new healthy lifestyle.

Caffeine is a stimulant of the central nervous system and can over stimulate your new heart. Some are more sensitive to the effects of caffeine than others. It can cause insomnia, heartbeat irregularities and diarrhea. Even a moderate amount of caffeine can promote headaches, trembling and nervousness. Your doctor will advise you on your need to limit your use of caffeinated products like coffee, tea, chocolate and sodas.

Alcohol consumption should be eliminated or severely restricted after your transplant. Alcoholic beverages are high in calories, low in nutrients and can increase the level of triglycerides in your blood. Even more important is the fact that alcohol can impair your liver's function. Several transplant medications are broken down in the liver. So, for your medications to work properly and safeguard your new heart from rejection, it is essential that your liver be healthy and properly functioning.

Smoking tobacco is a high-risk activity. We strongly recommend that you do not smoke. Smoking lessens the ability of your red blood cells to carry oxygen; less oxygen reaches your tissues, decreasing your ability to heal. Smoking constricts your blood vessels, especially those in your legs, arms and heart. All of these problems are accentuated in individuals taking immunosuppressive medications.


Physical Exercise

After transplant surgery, an active, progressive daily exercise program is vital for your full recovery. It will rebuild your muscle strength. It will boost your mood and enhance your mental state.

As a heart transplant recipient, you will find that your sensory experience of exercise is now very different from before. Your new heart does not have the same nerve connections as your old. In most patients, the nerves severed during surgery do not grow back like other structures in your body. We refer to your new heart as a "denervated" heart. Because your heart is denervated, its responses to exercise are different. Your heart functions perfectly well despite these differences; they do not limit what you are able to do.

Another important difference is that most patients no longer experience chest pain, or angina, when you exercise. The nerve connections that conducted this pain are gone. Any chest pain during exercise will probably be caused by the ongoing healing of chest after surgery. This lack of sensation is the rationale for receiving coronary angiograms each year following transplantation.

After receiving a new heart, we expect you to participate fully in all of life's activities. This means enjoying family activities, returning to work, leading a normal social life and contributing back to society.

Be aware that you will experience up and down days. Transplant is not a “cure” and has its own set of challenges. However, a heart transplant allows you to increase the quality of your life and extend your life by many years.

Discharge Instructions
General Health Considerations
Care for Wounds
Discharge Medicine
Care of a Urinary Catheter at Home

Take Your Medications as Directed

You will need to take medications the rest of your life to prevent your body from rejecting your new heart and to treat other medical problems. Always take your medications as directed. By the time you leave the hospital, you should be taking all of your medications without help from the nurses.

You must know:

  • The names of your medications and what they look like
  • What they are used for
  • The dosage (how much to take and how often)
  • The possible side effects
  • What times to take them

Points to Remember

  • Always report changes in your condition to your transplant coordinator or transplant cardiologist.
  • Never stop or change your medications without first consulting your transplant coordinator or transplant physician.
  • Always call the transplant coordinator before taking any new medications other than those prescribed by the transplant team. This includes any over-the-counter medications, nutrition supplements or herbal therapies. Some medications including herbal mixes may interact with your transplant medications and cause side effects.
  • Take your medications at the same time every day. Develop a system that helps you remember to take your medications at the right time(s) each day. Keep a record of your medications and when you take them. Bring an updated list of your medications and records to each follow-up appointment.
  • If you forget to take a dose, resume your normal medication schedule.
  • Do not take a double dose at one time.
  • If you are ill and vomit soon after taking your medication or have diarrhea for more than one day, call your doctor. Do not take a second dose of your medication without talking to your team.
  • Special containers, such as weekly pill boxes may help you remember to take your pills. But, store all remaining medications in their proper containers, with medication name, dosage, and expiration date listed, to avoid confusion and loss of potency.
  • Keep all medications in a dry place, away from moisture, heat, or direct light.
  • Keep all medications with you when you travel. Do not pack them in suitcases that may be lost or detained.
  • Always bring your medications with you to your follow-up visits.
  • Don't wait until you're almost out before you refill your prescriptions. Some pharmacies need to order your immunosuppressants, so keep ahead of schedule. Check your supply before vacations, holidays, and other occasions when you may not be able to obtain it. Your Transplant Coordinator is available to call in refill orders to your pharmacy during normal office hours (Monday through Friday 8:00 a.m. - 4:00 p.m.)
  • Talk to your transplant coordinator if you are uncertain about a medication or its dose.
  • Call the transplant team if you have any side effects.
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