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Miami Transplant Institute

Pediatric Lung Post Transplant Care

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Overview

After Transplantation

The needs of each patient are individualized based on our current protocols. When you first leave the hospital after lung transplant, you will need to visit the transplant center (about once a week). 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 lung transplant has a wonderful opportunity and second chance at life. In many cases, one's quality of life improves dramatically. It is important for lung transplant patients to take care of the new lungs 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, bronchoscopies 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 lung transplant medications can affect your body in different ways. Your doctor will monitor your body's responses after lung 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
  • Spirometry readings
  • Comments, events, or questions you want to ask

This information helps your doctor adjust your medications and care to make your lung 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 transplant pulmonologist or transplant surgeon. 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.

If you have any questions about the test, or about how you feel, call your doctor or the Lung Transplant Program to speak to a nurse coordinator between the hours of 8:30 AM and 5:00 PM.

This resource provides brief, general information. It does not take the place of specific instructions you receive from your health care provides. For answers to other questions consult your physicians or other health care provider.

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. 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.

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 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

Transplant patients are more susceptible to malignant tumors (cancers) than the general population.  This is related to the immune system being suppressed by your transplant medications.  Your body may escape detecting the malignant cells which result in developing a cancer or tumor.  Skin cancers are the most common so it is important to 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, Immunosupression and Infection

You will be on a relatively high dosage of three immunosuppressants, including prednisone, a steroid medication. These medications are very powerful, particularly prednisone, which is excellent for slowing inflammation that develops when your body recognizes the new organ. However, they can cause side effects, such as high cholesterol and triglycerides; high blood pressure; and kidney and gastrointestinal problems. When that happens, medications will be prescribed to treat the problems. Eventually, the dosage of immunosuppressants will be somewhat reduced as your body adjusts to the transplanted lung, but they will never be totally withdrawn.

Always keep in mind that the two most serious risks are organ rejection and infection. Those immunosuppressants, which are so important in protecting your new organ from being rejected, also make you more vulnerable to infections. For example, a simple cold can quickly turn into bronchitis or pneumonia. Your transplant team is experienced in immediately diagnosing and treating both rejection and/or infections – particularly when caught in the early stages. So, to help protect yourself from either of these medical problems, you must be compliant and vigilant — e.g., keep your follow-up appointments, call with any problems, do not miss a medication dosage.

Pulmonary Rehabilitation

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. You will be started on an exercise program with physical therapy while you are still hospitalized and will also be required to continue the pulmonary rehabilitation program begun in the hospital to increase your strength and endurance. If you are unable to attend the program at Jackson Memorial Hospital, you can participate in a local rehabilitation program recommended by your transplant team.

Since everyone recuperates at a different rate your program will be individualized to your needs.  You can expect to attend two to three times per week for the first month following your transplant.

Monitoring For Rejection

At the time of your discharge from the hospital and then at regular intervals during the first year (usually three weeks and three months following discharge and then every three months), your transplant physician will perform a bronchoscopy with a biopsy to look for any subtle signs of rejection

Stages of Rejection

Stage A0 – No acute rejection
Stage A1 – Minimal acute rejection
Stage A2 – Mild acute rejection
Stage A3 – Moderate acute rejection
Stage A4 - Severe acute rejection

Bronchoscopy is a diagnostic procedure used to obtain a small amount of lung tissue and fluid samples, which are then examined under a microscope to help in diagnosing a change in your lung function. During this procedure, your lung doctor examines your lungs (bronchial tubes) and looks for abnormal conditions, such as infection, tumors, bleeding and abnormal sites.

Bronchoscopy provides important information about the condition of your transplanted lung(s) and for your treatment. You will be asked to sign a consent form prior to the test. Your consent tells that you understand the reason for the bronchoscopy, how it is done, possible alternatives, and possible risks. Refer to Bronchocopy Instructions for more detailed information

What are the risks of a bronchoscopy?

The primary risk with bronchoscopy is bleeding from the site of the biopsy, but this occurs in less than 1% of patients. Other rare complications include lung collapse, hoarseness, sore nose or throat. You will be monitored closely for several hours after the procedure to make sure no complications arise.

Instructions for patients having a bronchoscopy.

The Transplant Office staff will set up the appointment for your bronchoscopy and call you with the date and time. Please be sure to follow these instructions:

1.  You must abstain from aspirin and ibuprofen-containing medications. This includes but is not limited to Advil. Motrin, Nuprin, and Aleve these medications can cause increased bleeding. Tylenol is OK. Notify your physician if you are taking blood thinning medication.

2.  You will be notified of arrival time and place of the bronchoscopy.

3.  Your doctor may order tests such as blood tests, an EKG, or a chest x-ray, to be performed before the procedure. These tests may be done in the physician’s office, the hospital, or in an outside laboratory.

4.  On the night before the procedure, do not eat or drink anything after midnight, unless your doctor gives you different instructions.

5.  If you usually take medications in the morning, ask your doctor whether you should take them as usual or if they should be taken after the test.

6.  When you come for the procedure, bring a list of any medications you are taking, along with the dose of each medication.

7.  On the day of the test, please arrive 30 minutes before the appointment time.

8.  Please dress comfortably and leave valuables at home.

9.  Be sure to arrange for someone who will; be responsible for taking you home after testing. This person may arrive with you, or up to four hours after your arrival.

How is bronchoscopy performed?

In the pulmonary lab procedure room, your temperature, pulse, and blood pressure will be taken.

A plastic clip will be placed on your finger to measure the oxygen in your blood during the procedure. This is known as a pulse oximeter.

Your heart rate will be monitored throughout the test, and you will receive oxygen.

An IV (an intravenous line, a thin plastic catheter which goes into your vein) will be started. This is used to give you medication as needed.

Medication may be used to make you drowsy and relaxed.

Your throat will be sprayed with a local anesthetic to make it numb. This will make you more comfortable when the scope is passed through the throat.

The bronchoscope is a long soft tube with a magnifying glass and light on the end. The tube is about as wide as a pencil. The scope is gently passed through your nose or mouth, and into your lungs.

You will be able to breathe easily throughout the procedure. The doctor will be able to see into the airways, and can take samples of tissue for biopsy through the scope. You will be observed closely by the nurse during the test and afterwards, until you are fully awake and able to leave the area for discharge.

How will I feel during bronchoscopy?

You might feel some discomfort as the scope is passed through your nose and throat. This will be minimal and it will last only about 10-15 seconds.

Usually there is a small amount of bleeding after the test if a biopsy is taken. You may notice that you cough up some blood tinged mucous. This will decrease after a few hours. If the bleeding increases or if it lasts longer than 24 hours, call your doctor.

When can I eat after bronchoscopy?

Two hours after the test, you will be able to take a few sips of water.

If you can swallow without a problem, you can eat and drink normally at that time. If not, wait another hour and then try sips of water again.

What should I do when I get home?

You may want to take it easy for the rest of the day after the test. If you received sedation you may feel tired or sleepy. Do not drive or operate machinery or sign any legal documents for the next 24 hours after the sedation.

Do not take aspirin in the first 24 hours after the procedure. Check the label of brand name medications to see if they contain aspirin as they can increase bleeding.

Check with your doctor about any possible changes in your usual medications and ask when you can begin to take them again.

You may have a slight fever after the bronchoscopy and your doctor may suggest taking acetaminophen (for example Tylenol) for fever or discomfort.

What symptoms should I report to the doctor after bronchoscopy?

Bleeding that lasts longer that 24 hours or if it increases (report amounts greater that blood-streaked mucus).

Fever (temperature over 100F) that lasts more than 24 hours.

Shortness of breath or chest pain.

Shortness of breath

Chest pain

High fever beyond the first day

 

Bronchiolitis Obliterans Syndrome (BOS)

The most common late complication of lung transplant is the development of bronchiolitis obliterans or obliterative bronchiolitis (OB). OB is an inflammatory disorder of the small airways, leading to obstruction and destruction of pulmonary bronchioles. The term bronchiolitis obliterans syndrome (BOS) refers to chronic lung rejection. BOS affects up to 50 percent of lung transplant patients within five years of the transplant and is perhaps the main impediment to prolonged survival.

Symptoms of Rejection

Be alert to possible signs of rejection, which include shortness of breath, fever, flu-like aches, chills, pain over the transplanted lung, and/or a cough. Signs of infection can include fever, sore throat, shortness of breath, redness or draining pus at the site of your incision, a sore throat, pain during urination, nausea, vomiting or diarrhea. Monitor your spirometry readings and report any unexplained decline of 10% or greater in your baseline FEV1.

If you experience any of signs or symptoms that concern you, immediately alert your transplant physician, surgeon or coordinator. Rest assured that you can reach a transplant physician or surgeon any time during weekends, holidays, or at night. One of them is always on call.

Incentive Spirometry:
Is a measurement of your airflow. You will be instructed on the daily use of this device before you leave the hospital.
Peak Flow Measurement:
Measures the force that you can blow air out of your lungs. You will be instructed on the daily use of a peak flow meter in the hospital.

Preventing Infection

Although lungs are internal organs, they are exposed to a variety of foreign substances that you inhale, such as dust, bacteria, viruses, which make them quite vulnerable to infections. For that reason, avoid people with communicable diseases. Following surgery, you will wear a mask covering your nose and mouth whenever you're in public places or taking public transportation, and while visiting the outpatient transplant center or hospital.

Your immune system is made up of mostly white blood cells that fight infection. It can also work against your new lungs, 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.
  • Wear a face mask in crowded public areas and hospitals / clinics
  • Take care of cuts or wounds.
  • Practice good dental hygiene. Wash with soap and water; keep your hands away from your face and mouth.
  • 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.
  • Shower instead of bathe, and practice good personal hygiene
  • Avoid eating raw oysters, raw shellfish, or raw fish
  • Eat a healthy, well-balanced diet and follow safe food preparation guidelines.
  • Pets are fine, but you must be able to delegate changing the cat litter box, fish tanks.  We encourage birds are not kept in your living space.
  • Avoid stagnant water as it harbors bacteria. This includes denture cups, flower vases, ponds.

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. Keep in mind, Prednisone can mask the usual signs of infection so make sure you get treatment promptly.

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
  • Unexplained cough or decrease in spirometry readings

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 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 potent antifungal medications.

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 Include:

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

 

Medications

You know that after your lung 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 that must be taken every day.

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. Lung 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 lungs an opportunity to work at its best function. Excess weight increases the work your lungs 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 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.

Discharge Instructions

Discharge Medicines

The ABC of CMV

Care of Wounds

Diabetes

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.
Pediatric Lung and Heart-Lung Transplant
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