What Happens After Surgery

Visiting Hours

The visiting hours in the ICU are different for each patient. Your Transplant Team will decide when you are well enough to see visitors and will tell your family when they are able to visit. Generally, after you’ve recovered from anesthesia, your family may see you in the ICU periodically, after checking with your nurse.

After you are transferred to your room in the Transplant Unit, the visiting hours are not strictly enforced. However, the staff recommends no more than two visitors at one time, since rest is an important part of your recovery. The Transplant Unit also requests that reasonable hours (from 9 a.m. to 8 p.m.) be observed. Children under age 6 should not visit while the patient is hospitalized. If you have any questions or concerns about visiting hours, please ask the Transplant Unit staff.

Here are some tips for making your hospital stay more comfortable:

  • Bring a tape player, favorite music, books, or other things from home to make your stay more comfortable.
  • Personalize your hospital room with photos of family and friends, cards, and get well wishes — whatever makes you feel comfortable.
  • If nights are especially stressful, ask for special arrangements to allow your support person to stay with you. (Patients in the Children’s Hospital may always have a support person remain overnight. No special arrangements are necessary.)
  • Keep a calendar of events or record your thoughts and feelings in a diary or on a tape recorder. Try to take one day at a time rather than worrying about what will happen next week.

Pain

As you recover and "wake up" from the anesthesia, you might experience pain and/or nausea. You also will feel some pain at your incision site.

In most cases, your pain will be managed by a patient-controlled pain pump to make you as comfortable as possible. The pain pump has a hand-held button that will allow you to deliver pain medicine (as prescribed by your doctor) directly into your IV on demand (when you decide you need it). After a few days, your discomfort should gradually decrease.

Breathing exercises and activity

A healthcare provider will show you how to do deep breathing exercises with an incentive spirometer. An incentive spirometer is a breathing aid to help keep your lungs clear and active while you are recovering from surgery.

You also will be asked to cough frequently. Because coughing will put pressure on your incision and might be painful, we recommend holding a pillow against your chest while you cough. Coughing helps remove secretions from your lungs to prevent infection.

It is important to change positions and move your legs and feet often during your recovery to maintain your circulation and improve your strength. The nurse will help you with these activities.

As soon as possible after surgery, your nurse will help you get out of bed and walk in the hallway. Your family and friends can walk with you when they visit. Stop and rest whenever you feel tired, but try to increase the distance you walk a little every day.

Diet Restrictions & Hospital Routine

Initially, you will be given intravenous fluids and food through the tube in your arm.

After the tube in your throat is removed, you might only be able to eat ice chips and/or drink clear liquids. Your diet will gradually be increased to solid food over the next few days after your surgery.

A low-fat, low-sodium diet is required after transplant. If you have diabetes, you will follow the same diet you had before your surgery.

Initially, a member of the surgical team will visit you to tell you about the surgery. Every day while you are in the hospital, you can expect early morning visits, as well as periodic visits at night, from your doctors. Your transplant coordinator also will check on your progress frequently throughout the day.

The dressing over your incision will be changed, and blood samples will be taken every morning. The blood samples are tested in a laboratory, and the results indicate how well your new lung is working.

Your weight will be checked every day. Your weight reflects your fluid level and how well your kidneys are functioning.

Your urine output also will be measured daily. Once the catheter is removed, make sure you collect your urine so the nurse can record the amount.

How much you eat and drink will be recorded daily.

Every day, you will gradually increase your activity. You also will continue to learn more about your medicines and daily healthcare in preparation for your recovery at home.

Although you might find it difficult to be so dependent on your healthcare providers for your daily needs, you must remember that they are specially trained and know what type of care you need. You should be reassured that your healthcare providers are doing everything possible to help you regain your health.

Trouble sleeping after surgery

Yes. Many people complain of having trouble sleeping for some time after surgery. You might experience insomnia (an inability to sleep) because of:

  • The effects of anesthesia
  • Discomfort related to healing
  • Unfamiliar surroundings or noisy environment
  • Stress from personal concerns
  • Side effects from medicine

If you cannot sleep, try these tips:

  • Arrange the pillows so you can maintain a comfortable position.
  • Avoid napping too much during the day. At the same time, remember to balance activity with rest during recovery.
  • If you feel nervous or anxious, talk to your spouse, partner, or a trusted friend. Get your troubles off your mind.
  • Listen to relaxing music.
  • Practice relaxation techniques. Tense and relax your muscles. Begin with your feet and work your way up to your shoulders.

Length of Stay

You can expect to stay in the hospital two to three weeks, depending on how quickly you recover from surgery and whether you develop any complications.

Remember, each patient has a different rate of recovery. You will be discharged only after your Transplant Team has determined that you have regained your strength and your health is stable.

You can expect to remain in the Cleveland area for an additional two to three weeks after discharge for close medical observation.

Ten Tips for a Healthy Lung Transplant Recovery

  1. Take all of your medications exactly as prescribed.
    • If you have any pre-transplant medications left, do not take them unless otherwise instructed by your healthcare provider.
    • Keep a list with you of all your medications and their dosages.
    • Do not take any other medications (over-the-counter or prescribed medications) unless you talk to your doctor first.
    • Don’t stop taking your medications unless you talk to your doctor first.
    • Never double the dose of your medication.
    • Do not keep outdated medication or medication that is no longer needed. Throw old medicines away or bring them to Cleveland Clinic and give them to your transplant coordinator.
    • If you store your medications in a container, label it with the medication name, dose, frequency and expiration date.
    • Keep your medications in your carry-on luggage when you travel. Do not pack your medications in a suitcase that is checked, in case the suitcase is lost.
    • Take extra medication with you when you travel in case your flight is delayed and you need to stay away longer than planned.
    • If you have any pre-transplant medications left, do not take them unless otherwise instructed by your healthcare provider.
  2. Keep all of your scheduled appointments with your physician or transplant coordinators.
  3. Call your physician or transplant coordinator if you have any questions or concerns or if you have:
    • A fever over 100°F.
    • Flu-like symptoms such as chills, aches, headaches, dizziness, nausea or vomiting
    • Cold symptoms such as a cough, sore throat or runny nose
    • New pain or tenderness around the transplanted lung
    • Increased shortness of breath
    • Flu-like symptoms such as chills, aches, headaches, dizziness, nausea or vomiting
  4. Do not ignore any signs or symptoms that you are experiencing. Always call your physician or transplant coordinator if you have any unusual symptoms or symptoms that cause you concern.
  5. Have your blood drawn promptly, as recommended by your transplant physician or transplant coordinator.
  6. Report your lab work results to the Transplant Center promptly.
  7. Follow your recommended dietary plan.
  8. Follow your recommended exercise plan.
  9. Perform your pulmonary function tests every day as recommended.
  10. Avoid being around anyone who has an infection.

Nutrition after Transplantation

How will my diet change after the lung transplantation?

Because of the new freedom to indulge in many different foods, and an increased feeling of hunger due to medications such as prednisone (Deltasone), it is easy to see why excessive weight gain is a common problem for many transplant patients.

To promote healing after lung transplantation surgery, you should eat more lean meat, poultry, fish and low-fat dairy products. You should include a variety of grains, fruits and vegetables for adequate calories, vitamins and minerals.

Will I have a nutritional plan to follow?

Yes. In order to monitor your weight gain after transplant surgery, a registered dietitian will work with you to develop a nutritional plan. This plan will be determined by your weight, blood work results and medications.

The information below describes some of the dietary guidelines a dietitian may recommend for you. These guidelines cover only some of the changes that may take place in your diet. Your dietitian will plan a nutritional program to meet your personal needs.

Potassium

Some transplant medications may cause your potassium level to dramatically increase or decrease. This is a serious condition; but fortunately, it usually does not last long. In order to control your blood potassium level, make sure to eat the foods your dietitian recommends.

Food Guide Pyramid

Sodium or Salt

Many people experience high blood pressure or fluid retention following lung transplantation. If fluid retention or high blood pressure are problems for you, the dietitian will incorporate low-salt foods throughout your meal plan.

You may need to follow a low-sodium diet indefinitely after transplant.

How can I control my weight and cholesterol levels?

Two common long-term problems for transplant patients are weight gain and high cholesterol levels. The following are suggestions that may help you control both:

Weight Gain

The medication prednisone (Deltasone) may cause you to experience an increased appetite, which could lead to excess weight gain. Because you may or may not need to gain weight after your transplant, it is important to discuss this concern with your dietitian.

If you do need to watch your weight, it doesn’t mean you have to eat less food, just be more selective about the foods you do eat.

Your dietitian will work with you to achieve and maintain your ideal weight. In general, you should follow these suggestions:

  • Limit foods that are high in fat and calories.
  • Include more high fiber foods, such as fruits, vegetables, whole grain breads and pasta in your diet.
  • Consult your physician for recommendations on the types of exercise you can include in your daily schedule.

High Cholesterol Levels

  • By limiting fat in your diet and eating foods high in fiber, you may be able to control high cholesterol levels.
  • If you are overweight, your dietitian will discuss a diet plan that is low in both fat and cholesterol.

How can I make an appointment with a dietitian?

Registered dietitians are available in the hospital, at the Transplant Center and also in the Department of Nutrition Therapy.

If you have questions or need to schedule an appointment with a dietitian, please call 216.444.3046 or 800.223.2273, ext. 43046.

Nutrition Hotline: 216.445.2710.

For More Information

If you have any questions or concerns, please call us at 216.444.6996.
We will be happy to answer your questions.

Returning to Your Regular Activities

Now that I feel better, when can I return to my regular activities?

You can resume your previous activities as soon as you feel better, but remember that your recovery will take several months and you should increase your activity gradually. A daily pulmonary rehabilitation program, prescribed by your physical therapist, will strengthen your lung and continue to improve your overall health as you recover at home.

You will not injure yourself or your new lung if you follow these general guidelines:

  • Do not lift anything over 5 pounds (including your suitcase when you leave the hospital) and avoid strenuous physical work for at least six to eight weeks after surgery. It is important that you also not lift anything greater than 10 pounds after six months from the date of your surgery.
  • Avoid driving for at least six weeks after surgery. Plan ahead so a friend or family member can help out during this time. When you are in a motor vehicle, always wear your seat belt.
  • Gradually increase your physical activities after your incision has healed. Exercise is encouraged. We recommend beginning with stretching exercises and walking to help you regain your strength. Pay attention to how you feel when exercising; stop and rest when you feel tired or if you feel pain.
  • As a general rule, rough contact sports should be avoided since they may cause injury to your transplanted lung. If you have doubts about any activity, please ask your doctor or transplant coordinator.
  • Keep your home and work environments smoke-free. Don’t go near areas where there are fumes or smoke, and avoid areas where people are smoking.
  • Follow your doctor’s guidelines regarding your diet, level of activity and returning to work.
  • Call your physician if you have a temperature over 100°F, have a cough that is different from other coughs you had before the transplant; are feeling overly tired or short of breath; are dizzy; or have any sores, blisters, new growths or lumps (check your neck, armpits and groin and women should check their breasts for lumps). Go to the emergency room if you have a cut that is deep or bleeds heavily.
  • See your family physician for a complete physical every year after your transplant.

What to do if you have trouble sleeping?

Many people complain of having trouble sleeping for some time after surgery. You may experience insomnia (an inability to sleep) because of discomfort related to healing, stress from personal concerns or side effects from your medications.

If you cannot sleep, try these tips:

  • Establish a regular sleep schedule; go to bed and get up about the same time every day.
  • Make sure your bed and surroundings are comfortable. Arrange the pillows so you can maintain a comfortable position.
  • Keep your bedroom dark and quiet.
  • Use your bedroom for sleeping only; don’t work or watch TV in your bedroom.
  • Avoid napping too much during the day. At the same time, remember to balance activity with rest during recovery.
  • If you feel nervous or anxious, talk to your spouse, partner or a trusted friend. Get your troubles off your mind.
  • Listen to relaxing music.
  • Do not take sleeping pills. They are very harmful when taken with your other transplant medications.
  • If you can’t sleep, get up and do something relaxing until you feel tired. Don’t stay in bed worrying about when you’re going to fall asleep.
  • Avoid caffeine.
  • Maintain a regular exercise routine, but don’t exercise within two to three hours before bed time.

When will I be able to return to work?

Many lung transplant patients are able to return to work within a few months after surgery. However, various aspects of the recovery process can affect the timing of your return.

You will need to discuss returning to your job with your doctor and transplant coordinator. When the time approaches, a “return to work” letter will be provided. This will let your employer know when you may begin working and what limitations, if any, you may have at work.

How soon can I take a vacation?

You may travel as soon as you are feeling better, but always let your transplant coordinator know when you plan to go and provide a phone number where you can be reached.

By remembering these traveling tips, your vacation will be worry free:

  • Always take all of your medications with you, and make sure you have enough medications to last throughout your trip.
  • If you are traveling by plane, carry your medications with you. Never check them with your luggage. You may need a letter from the Transplant Team that verifies all of your medications, especially if you are traveling internationally. Pack this letter with your medications.
  • Always wear your Emergency Medical Identification.
  • Make sure you have Cleveland Clinic Transplant Center’s phone number.
  • Check to see if there is a medical laboratory or transplant center nearby where you can have your blood work completed. This lab will need to report your results to Cleveland Clinic’s Transplant Center.
  • Be careful to avoid infection when traveling. In areas where the water might be unsafe, drink bottled water or other beverages (order beverages without ice). Swim only in chlorinated pools.
  • Select food with care to avoid illness.

Sexual activity after transplantation

  • There are no restrictions on resuming sexual activity.
  • To avoid straining yourself while recuperating, you may want to use a low-stress position.
  • We recommend that you use condoms to prevent infection.
  • Report genital rashes, sores, unusual discharge or yeast infections to your transplant coordinator.

Recommendations for Female Transplant Patients

Even if your periods seem to have stopped, you should always use a safe and effective method of birth control after transplant surgery. We do not recommend birth control pills, because of the added risk of side effects.

Pregnancy is not recommended, especially within one year after transplant surgery. The medications you take after surgery are harmful to a developing baby, and the stress of pregnancy on your body can be harmful to your health.

If you desire to have children after your transplant, there are other options such as adopting and serving as foster parents.

Please discuss these options with your transplant coordinator or social worker.

Recommendations for Male Transplant Patients

Male transplant patients may experience difficulty with erections after surgery. This may be caused by a reduction of blood flow to the penis or it maybe a result of the transplant medications. In most cases, this situation can be corrected.

If impotence becomes a problem for you, please feel free to discuss any concerns with your physician or transplant coordinator. Cleveland Clinic has specialists who are available to help you with these issues.

For More Information

If you have any questions or concerns, please call us at 216.444.8282.

Contacting the Family of Your Organ Donor

Any time after your transplant, you may decide to write to the family of your organ donor. This decision is a personal one. In order for you to make the decision, it may be helpful for you to know that organ donor families have expressed their appreciation for the correspondence they receive from recipients.

You do not have to contact the donor’s family. This information is provided for you only if you decide to do so.

What information should I include?

Here is some information you may want to include in your letter to the organ donor’s family:

  • Your first name only
  • The state where you live
  • Recognize the donor family and thank them for their gift
  • How long you waited for a transplant, and how the wait affected you and your family
  • How the transplant has improved your health and changed your life
  • What has happened in your life since the transplant
  • Mention if you are married, have children, grandchildren, etc.
  • State your hobbies or interests

What information should not be included?

  • Do not include your address, city or phone number.
  • Do not include the name or location of the hospital where your transplant surgery was performed, nor the names of your transplant healthcare providers.
  • Use caution when including religious comments, as you do not know the religion of the donor’s family.

How can I send the letter to my donor’s family?

After you write a letter to the donor’s family, place it an unsealed envelope (The correspondence is reviewed for confidentiality.) and include a separate sheet of paper with your full name and date of transplant. Send this information in a separate envelope to:

Lung Transplant Coordinator
The Cleveland Clinic
9500 Euclid Ave., A110
Cleveland, OH 44195

After receiving your correspondence, the transplant coordinator forwards it to Lifebanc, Northeastern Ohio’s organ procurement agency. Lifebanc will notify the donor’s family that there is correspondence from the recipient.

Confidentiality

In general, the identities of the donor and the recipient of the organ are confidential, to protect each individual’s privacy.

Although there is no law that a donor’s family and the organ recipient cannot meet and know each others’ names, all organ procurement agencies (such as Lifebanc) maintain the privacy of the donors and recipients.

Will I hear from the donor’s family?

You may or may not hear from your donor’s family. Some donor families may feel that writing about their loved one and their decision to donate helps them with their grieving. Others choose not to write to the organ recipient.

If the donor’s family chooses to respond, they will send a letter to Lifebanc. Lifebanc will forward the correspondence to your transplant coordinator, who will forward the response to you.

For More Information

If you have any questions or concerns, please call us at 216.444.6996. We will be happy to answer your questions.

Preventing Infection at Home

Why is there such a risk for infection during transplants?

One of the jobs of your immune system is to fight infection. Immediately before your transplant, you will need to take immunosuppressant medications, which suppress your immune system to prepare your body to receive the transplant. These medications decrease your body’s ability to fight infection. When the body’s defenses are down, infection can spread quickly.

There are several ways you and your family, friends and healthcare providers can help prevent infection after the transplant.

What can I do to prevent infection?

Practice good hygiene

  • Frequently wash your hands with soap and warm water, especially after using the bathroom. Lather well, rubbing your hands back and forth together, to clean all surfaces including the nail beds and the webbing between your fingers.
  • Bathe every day. Avoid using hair spray, oils or creams. Keep your hair clean and neat. If you have oily hair, try to keep it pulled back from your face.
  • Wash your face in the morning and at bedtime, using a mild soap and washcloth. To help prevent acne, keep your skin as clean and oil-free as possible.

Take care of your mouth and teeth.

  • Examine your mouth and gums daily.
  • After each meal, brush your teeth with a small, soft toothbrush and fluoride toothpaste.
  • Use dental floss daily.
  • If a mouth sore develops, eat foods that are warm or at room temperature, and avoid consuming acidic foods and beverages (such as tomatoes and oranges).

Protect your skin from scratches

  • Sores and other irritations might lead to infection.
  • If you have a cut (even if it’s small), clean the area well with soap and water or hydrogen peroxide. Dry your skin, and cover the cut with a sterile bandage.

What can my friends and family do to help prevent infection?

  • Do not send or bring live plants. Fruit baskets, balloons and fresh or silk flowers make nice gifts.
  • Follow the transplant unit’s guidelines about hand washing.
  • Do not visit if you have cold or flu symptoms such as a fever, cough or runny nose. Please return when you are feeling well.

For More Information

If you have any questions or concerns, please call us at 216.444.6996. We will be happy to answer your questions.

Transplant Rejection

What are the risks of transplantation?

The risks of transplantation are the same as those of any surgery, including the risk of bleeding or breathing problems. Some transplant recipients also may experience side effects from the medications.

The two main complications of transplant surgery are organ rejection and infection. Since the body recognizes the new lung as a foreign object, it will normally try to get rid of it or "reject" it. Anti-rejection drugs taken after surgery help prevent a rejection episode, but they also inhibit part of the immune system. Since the body’s ability to fight infection is decreased, transplant recipients are more prone to infections.

Years of experience, research and improved medications help prevent rejection, and your transplant team will take every precaution to prevent these complications. While you are recovering in the hospital, you will learn to recognize signs of rejection and infection.

What is transplant rejection?

The body’s immune system protects you from infection. Immune cells recognize the transplanted lung as different from the rest of the body and attempt to destroy it; this is called rejection and is your body’s way of not accepting the new organ.

After transplant surgery, you are prescribed immunosuppressive drugs to "fool" your immune system into thinking your new lung is your own so it doesn’t try to attack the new lung.

Although rejection is most common in the first six months after surgery, it can occur at any time. Fortunately, rejection can be treated, especially if the signs of rejection are recognized early. While you are in the hospital, the Transplant Team can usually recognize a rejection episode before it causes any major or irreversible damage.

After you go home, it's vital for you to be aware of the possible signs of rejection so you can report them to your healthcare providers and be treated immediately. It is also very important for you to continuously take your medications as prescribed, have your blood work drawn as scheduled, and follow your pulmonary function test and bronchoscopy schedules.

What are the warning signs of possible rejection?

If you are experiencing any of these symptoms, contact your transplant coordinator immediately:

  • Fever over 100°F (38°C)
  • "Flu-like" symptoms: chills, aches, headache, dizziness, nausea and/or vomiting
  • Chest congestion
  • Cough
  • Shortness of breath
  • New pain or tenderness around the lung
  • Fatigue or generally feeling "lousy"

How is rejection identified?

The Transplant Team will be able to determine if your body is rejecting your lung by completing daily tests of pulmonary function during your hospital stay. If the Team thinks you may be experiencing any problems with your new lung, the following tests may be completed:

  • Repeated blood work including a complete blood count
  • Bronchoscopy
  • Lung biopsy and surveillance bronchoscopy
    • These tests are performed routinely as part of your follow-up care (at three weeks, six weeks, three months, six months, nine months and one year after transplant surgery)

What is a lung biopsy?

A lung biopsy is a procedure in which a small sample of lung tissue is removed and tested. A lung biopsy is usually performed on an outpatient basis.

In order to take a biopsy, or a small sample of tissue, the skin above your lung is numbed to allow a small needle to pass directly through to your lung. Once complete, a microscope is used to examine the sample of tissue and establish a diagnosis.

The actual biopsy generally takes between 20 to 30 minutes. You will be required to lie flat for two hours following the procedure to prevent bleeding.

How is rejection treated?

If rejection develops, your physician will prescribe medications to treat rejection and prevent continued complications. In order to control the rejection, you may need to be admitted to the hospital, or you may receive care in an outpatient setting.

Will rejection treatment cause side effects?

The medications used to treat a lung rejection episode are strong drugs. The first few doses may cause the following side effects:

  • Fever, chills
  • Headaches
  • Nausea, vomiting
  • Weakness
  • Diarrhea
  • General flu-like symptoms

In order to help control these symptoms, you will receive a pre-medication of acetaminophen (Tylenol) and diphenhydramine hydrochloride (Benadryl) before each dose.

For More Information

If you have any questions or concerns, please call us at 216.444.8282. We will be happy to answer your questions.

What You Need to Know About CMV

Anti-rejection drugs taken after surgery help prevent a rejection episode, but they also inhibit part of the immune system. Since the body’s ability to fight infection is decreased, transplant recipients are more prone to viruses and infections.

What is CMV?

CMV is short for Cytomegalovirus. It is a type of herpes virus. CMV can affect almost any organ and cause almost any type of infection.

What are the symptoms of CMV?

Since CMV can affect almost any organ, it can cause many different symptoms. However, the majority of CMV infections are without symptoms (asymptomatic). Some symptoms include:

  • Fever over 100°F (38°C)
  • Low white blood cell counts (leukopenia)
  • Muscle weakness
  • Arthritis-like pain in the knees, hips, ankles or wrists
  • Fatigue
  • Mental confusion
  • Shortness of breath
  • Blurry vision or loss of vision (The CMV virus often infects one eye and tends to infect the other.)
  • Blood in the stools, nausea, vomiting or diarrhea (due to CMV gastritis or colitis — stomach or colon infection)
  • Seizures, headaches, confusion or coma (due to CMV encephalitis — brain infection)

What causes CMV?

CMV is most often caused by a reactivation of CMV acquired long before your transplant. If you develop your first CMV infection, the virus likely came from your transplanted organ. (The donor may have been exposed to the virus.)

CMV is transmitted by contact between mucous membranes (the mouth and genitals) and live virus present in the secretions of infected CMV patients.

How is CMV diagnosed?

CMV is difficult to diagnose, since its symptoms mimic many other illnesses. CMV may be detected through blood tests that indicate the presence of CMV antibodies. Urine and sputum cultures also may detect the virus. Biopsy of the infected organ can also indicate the presence of the CMV virus.

How is CMV treated?

Patients diagnosed with CMV are treated with an anti-viral medication, delivered intravenously (through an IV). Recovery may take a long time, and patients are advised to increase activity and exercise gradually, while including periods of rest throughout your recovery.

There is no cure for CMV. Once you have been infected with CMV, the virus remains latent and can cause infection again in the future.

For More Information

If you have any questions or concerns, please call us at 216.444.8282. We will be happy to answer your questions.

Follow-up Visits

After you go home, it will be your responsibility to seek consistent and proper medical care to follow-up your lung transplant. It is very important that you maintain your follow-up appointment schedule as recommended after your lung transplant.

Your follow-up appointments play a vital role in effectively monitoring your progress, as well as your lung function and your response to the medications after your lung transplant. These visits also provide you the opportunity to ask questions about your lung transplant recovery.

The role of your local physician in your lung transplant recovery

Your local physician is the doctor who cared for you before you came to Cleveland Clinic for your lung transplant. Your local physician will be notified when you receive your lung transplant and when you are discharged from the hospital.

The Lung Transplant Team will work with you and your local physician to coordinate your care and adjust your medications as necessary.

If you are sick, you should first see your local physician in his or her office, or if necessary, you should go to the nearest emergency room. Your local physician will perform an examination, obtain your current laboratory test results and order any other necessary tests. Your local doctor should discuss your illness and treatment with Cleveland Clinic Transplant Team, as it relates to your lung transplant.

Transplant Medications

The most important step in maintaining your health after your transplant is to take your medications exactly as prescribed. These drugs help prevent rejection and infection, and must be taken for the rest of your life.

What will I need to know about taking my medications?

Before any medication is prescribed, your physician will ask you:

  • If you are allergic to any medications
  • If you are currently taking any other medications (including over-the-counter medications)
  • If you have problems taking any medications

The type of medications, the dosage and side effects may be different for each patient. While you are in the hospital, the Lung Transplant Team will teach you about your medications and give you information sheets describing each drug and how to take it. Before you go home, the Transplant Team will make sure that you know:

  • The name of the drugs prescribed and their action
  • Please note: All medications have two names — the generic or chemical name (such as furosemide) and the brand name (such as Lasix). The Transplant Team will tell you both names of the medications.
  • The dosages, when (the time of day) and how to take the medications
  • The side effects and how you can treat or prevent them

Your family members are also encouraged to learn about your medications.

Will the drugs I’m taking cause any side effects?

Some of the drugs you are prescribed may cause unwanted side effects such as weight gain, acne or excess hair growth. Despite these side effects, never change the dose or stop taking your medications without first checking with your physician.

Many of the side effects can be controlled. Your doctor may adjust your dosage or offer other suggestions for managing the side effects. Keep all appointments with your doctor and the laboratory so your response to the drug can be monitored.

The individual drug information sheets contained in this notebook describe the common side effects of each drug and how to manage them.

Call your doctor or transplant coordinator if you become sick and vomit soon after taking your medication. Do not take a second dose without first talking to your healthcare provider. If you have diarrhea for more than one day, call your doctor or transplant coordinator. Also call if you have any other symptoms that are persistent or severe.

Does it really matter if I miss a dose?

Yes. It is very important to always follow the instructions for your medications every day to prevent rejection. The third major cause of transplant failure results from not taking anti-rejection medications as prescribed.

What if I forget to take my medications at the scheduled time?

If you miss a dose of your medication at the scheduled time, don’t panic. Take it as soon as you remember. However, if it is almost time for your next dose, skip the missed dose and return to your regular medication schedule.

As you begin to feel well, it may be easy to forget to take your medications, but always remember that your body never stops requiring the transplant medications. By taking your medications consistently and following-up with your physician routinely, you are assuming the most important job after your transplant.

Dose changes

Your physician will periodically change the dose of your medications. The dose may be changed because you are having uncomfortable side effects or because blood test results indicate a different dose is needed.

You will receive a medication dosage record to write down your medications and dosages. Every time your physician tells you to change the dose of your medication, cross out the previous dose and write in the new dose. (Use ink, not pencil, and do not erase previous information so you have a record of your earlier doses.)

Remember, never change the dose of your medication unless your physician has told you to.

Other medications

Never take other medications without first talking to your physician. This includes over-the-counter drugs (those you can buy without a prescription). Some over-the-counter drugs include aspirin, ibuprofen (Advil, Nuprin), vitamins, cold medicine, antihistamines, antacids, laxatives and sleeping pills. Some over-the-counter medications may decrease the effectiveness of your transplant medications and can cause unwanted side effects.

Can I get financial assistance to help pay my medication expenses?

Yes. Your healthcare providers realize your medications are expensive, especially since you must take them for the rest of your life. There are several government and state programs that offer financial assistance for medication expenses.

Please ask your healthcare provider what programs are available for you. You also can ask to see a Patient Financial Advocate who can answer questions about insurance coverage and Medicare benefits related to your medication expenses.

Will any new medications be available?

Exciting developments in drug research are creating new immunosuppressive medications. Cleveland Clinic Lung Transplant Program participates in new drug studies on a continuous basis. You may be asked to take part in one of these programs after your transplant. All programs are strictly voluntary and have no influence on your transplant status.

General Medical Guidelines

Note: These are general guidelines. Be sure to ask your doctor or pharmacist for guidelines specific to your medication.

  • Keep a list of all your medications and their dosages with you.
  • Take your medications exactly as prescribed by your doctor.
  • Do not stop taking your medications unless you talk to your doctor first. Stopping your medication too early can cause the illness to return or make it more difficult to treat.
  • Do not double the dose of your medication.
  • If you miss a dose of your medication at the scheduled time, don’t panic. Take it as soon as you remember. However, if it is almost time for your next dose, skip the missed dose and return to your regular medication schedule.
  • Do not keep outdated medication or medication that is no longer needed. Throw away old medicines.
  • Store medications in a dry area away from moisture (unless your doctor or pharmacist tells you the medicine needs to be refrigerated).
  • Always keep medications out of the reach of children.
  • Contact your doctor immediately if you experience any unusual side effects after taking your medication.
  • Do not share your medications with others.
  • If you store your medications in a container, label it with the medication name, dose, frequency and expiration date.
  • Keep your medications in your carry-on luggage when you travel. Do not pack your medications in a suitcase that is checked, in case the suitcase is lost.
  • Take extra medication with you when you travel in case your flight is delayed and you need to stay away longer than planned.

Questions to Ask about your Medication

Be sure you know the answers to these questions before you start taking any new medication:

  • What is the name of the medication?
  • Why do I need to take it?
  • How often should I take it?
  • What time of day should I take it?
  • Should I take it on an empty stomach or with meals?
  • Where should I store the medication?
  • What should I do if I forget to take a dose?
  • How long should I expect to take the medication?
  • How will I know it is working?
  • What side effects should I expect?
  • Will the medication interfere with driving, working or other activities?
  • Does the medication interact with any foods, alcohol or other medications (including over-the-counter medications)?

For More Information

If you have any questions or concerns, please call us at 216.444.8282. We will be happy to answer your questions.