Follow-Up Care After Lung Transplantation

Your transplant team's involvement with you does not end when you leave the hospital. They are dedicated to providing you with follow-up care indefinitely.

Follow-Up Clinic Visits, Blood Work and Other Testing

Before leaving the hospital, you will receive a schedule of follow-up clinic visits for lab tests and checkups. The purpose of these important visits is to track your recovery progress and detect any potential complications as early as possible.

You will return to the comprehensive outpatient transplantation center once a week for the first two or three months following your surgery. These may be reduced to biweekly visits at the discretion of your transplant team if your recovery is proceeding without any complications. After three months, your visits will be scheduled once a month for the first year and then every other month thereafter, depending on how well you are doing. You will also return to your referring physician for your care that is not related to the lung transplantation.

  • On the days you are scheduled to see the transplant team, bring your medications list and your handbook.
  • You need to be at the clinic to have your blood drawn one hour before your morning dosage of medication is due.

Afterwards, you will take your medication. This is necessary so we can get an accurate reading of the immunosuppressant levels in your blood. The lab tests we perform monitor your blood counts, lung function, lung function, electrolytes, and the medication levels in your blood. Other tests may be ordered as necessary.

Laboratory Testing

During the first six-week post-transplant period, you will have chest x-rays and blood tests every week and then at regular intervals as necessary. The outpatient center has its own laboratory so that results from your blood tests can be available to your transplant team within 24 hours. This enables immediate and appropriate responses to any problems that are identified, prompting any necessary adjustments to your medications.

Tests for Blood Count

WBC tells us if your white blood cells have increased (usually a sign of infection) or decreased (indicating a lower defense against infection).

HCT measures your hematocrit, the percentage of red blood cells present in your blood. Red blood cells carry oxygen to all parts of the body. When your HCT is low, you may feel tired or have little energy.

PLTS measures the level of platelets in your blood. Platelet cells form blood clots when your body is injured. Low platelet levels may cause you to bruise easily and to bleed for a longer time period.

Tests for Lung Function

PFTs: A noninvasive, outpatient test used to measure lung function

CXR: A radiologic examination to assess chest and lung abnormalities

CT Scan of Chest: An outpatient, noninvasive, radiologic test to assess your chest cavity including your heart and lungs.

Bronchoscopy: is an outpatient, minimally invasive procedure during which your pulmonologist looks at your lungs and airways (the bronchial tubes and lungs).

6 Minute Walk: This is a preoperative evaluation where the physical therapist will walk with you to measure your oxygen saturation level over time and distance.

Intravenous Medications

For the first few months following surgery, you will probably also require intravenous (IV) medications. Your transplant team will make all arrangements for your regular IV treatments.

Remaining Compliant and Vigilant

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.

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. During your first three months following surgery, you will wear a mask covering your nose and mouth whenever you're in public places or taking public transportation, when you have company in your home or you're around children, and even while visiting the outpatient transplant center.

Monitoring for Rejection

At the time of your discharge from the hospital and then at regular intervals during the first year (usually six 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

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.

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.

Tooth and Mouth Infections

Teeth and mouth infections can be particularly threatening. So, make sure you have your teeth cleaned twice a year. But before each cleaning, check with your physician in case you may need to take antibiotics right before the cleaning.

Monitoring Vital Signs

After you leave the hospital you will be asked to monitor your temperature, blood pressure, weight, pulmonary function and to keep a record of these measurements and laboratory test results.

Temperature

It is important to take your temperature every day in the morning. An increase in your normal temperature can be a symptom of either organ rejection or infection. Both rejection and infection are easier to treat when recognized early. Someone whose immune system is suppressed does not always get high fevers. Call your transplant team any time your temperature reaches 101° F (39.5° C).

Blood Pressure

High blood pressure is a common side effect of both Neoral® and Prograf®. It can also indicate that you are retaining fluids. Once you return home you will need to take your blood pressure in the morning, afternoon, evening and at bedtime, and keep a record of the results.

You may be discharged on medications that control blood pressure. You can help keep your blood pressure under control by eating a low- salt diet, and by losing extra weight. The team's nutritionist can help you with this.

Your nurse will teach you how to measure your blood pressure. The top number (systolic) is noted at the first sound you hear and the bottom number (diastolic) is noted when the sound changes (not stops). It is important that you know your normal blood pressure, normal fluctuation range, and when you should be concerned. You should notify your transplant team or local physician if your blood pressure measures:

  • Systolic: more than 160 or less than 100.
  • Diastolic: more than 90 or less than 60.

Headache can be a symptom of high blood pressure. If you develop a headache, take your blood pressure. If it is above normal for you, call the transplant team. Also check your blood pressure if you are feeling dizzy or light-headed. These symptoms can be caused by low blood pressure. If your pressure is atypically low, call the transplant team.

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.

Weight

You should weigh yourself on a standard bathroom scale at the same time each morning after going to the toilet. Record your weight. If you gain more than 2 pounds per day, you could be retaining fluid. Report this to your transplant team or local physician.

Pulmonary Rehabilitation

For at least three months, you 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 Columbia University Medical Center, you can participate in a local rehabilitation program recommended by your transplant team.

You may be able to go back to normal non-strenuous activities, including work, in three to six months. Of course, that will depend on whether your overall recovery process is eventful or not. Remember: Not only are you recovering from a major surgery but also your serious pulmonary disease. To regain your strength, you will need to begin exercising. But be careful. Start slowly. Begin with walking at a slow pace for a short distance. Then gradually increase the pace and distance as you feel stronger. Also, do not lift anything heavy for at least two months following your surgery. Eventually you'll be able to expand your type and level of exercise. Just let your transplant physician, surgeon or coordinator know if you plan to try a more strenuous activity.