Most lung transplant patients go home from the hospital 10 to 14 days after their surgery. For the next several weeks, patients are followed closely by the Penn Lung Transplant team.
Written letters and progress reports are sent to every patient’s primary care provider and community pulmonologist to keep them current with the details of recovery. Patients are strongly encouraged to schedule a follow-up appointment with their primary care provider and local pulmonologist within three to four months of the transplant surgery.
Immediately following hospital discharge, patients are expected to return to the Penn Transplant Institute three times a week for 12 weeks. During these visits, patients receive ongoing therapy and medical care while they are monitored for any signs of infection, rejection or medication side effects.
It is important for patients and their support team to understand all the details of care prior to going home. The transplant team encourages patients to take an active role in designing the plan for their post-transplant care.
Patients receive a discharge guide before leaving the hospital that outlines all of the information needed to take good care of themselves and their new lungs. As is the case with any major life event, it takes some time to get used to this new lifestyle. Some basic guidelines for care include:
- Temperature: Patients should take their temperature every morning before breakfast and every evening before dinner. Temperatures 100 degrees or above require a call to the transplant nurse coordinator (daytime) or the doctor or nurse practitioner on call (nights and weekends).
- Weight: Patients should weigh themselves every morning before getting dressed or eating breakfast. Weight gain or loss of five pounds over two or three days should be reported to the transplant nurse coordinator.
- Microspirometer: This small pulmonary function testing monitor should be used every morning at the same time. A decrease in numbers should be reported to the transplant office right away.
- Keeping records: Writing down microspirometry numbers, medications and (if advised) blood sugar, body weight or blood pressure, is very important. By keeping track of this information, patients help the doctors and nurses to understand how their body is recovering from surgery and responding to medications and therapy. Work sheets are included in the discharge booklet for documenting this important information. The work sheets should be brought to all followup appointments.
- Medic Alert®: Lung transplant patients are encouraged to participate in the MedicAlert® program. Should they ever require emergent care and unable to provide their medical history, the medic alert operators can provide it on their behalf.
- Exercise: Exercise programs are specially designed by the pulmonary rehabilitation team for every patient based on their abilities and needs. Patients are expected to go to pulmonary rehabilitation three times a week and should exercise at home as they feel comfortable without getting overtired. For the first six weeks the surgical incision is still healing so patients should not lift anything heavier than five pounds.
- Nutrition: It is very important to eat a well-balanced diet and follow the guidelines provided by the lung transplant dietician. Because patients are taking a lot of medications, they are asked to avoid alcohol.
- Emotional recovery: Patients and their loved ones have been through a great ordeal. Even though transplant is a life-saving procedure, it is very stressful for all involved. Patients are encouraged to talk with the lung transplant social worker or transplant nurse or doctor and participate in the monthly lung transplant support group meetings.
- Sexual activity: Sexual activity may be resumed as soon as patients feel ready. Safe sex practices are recommended.
- Infection prevention: People who have had transplants are immunosuppressed and very susceptible to infections. Avoiding people with contagious infections such as measles, mumps, chicken pox, colds, or flu is recommended. Patients exposed to anyone with a contagious disease, should call the transplant office right away.
- Over-the-counter medications: Tylenol® (acetaminophen) can be taken as prescribed on the bottle. Patients should not take any other over-the-counter medications without checking the transplant team.
- Dentist: Good oral health is important and patients should see the dentist every six months. Prophylactic antibiotics may be prescribed for any dental procedures so patient should call the transplant office before dental appointments.
- When to call the transplant office:
Patients should contact the Penn Lung Transplant Team when they have questions or concerns about their health, or in case of:
- Weight gain or loss of 5 pounds
- General feeling of illness
- Persistent cough
- Shortness of breath
- Increased sputum production or change in color of sputum
- Sore throat
- Tooth or gum pain
- Redness, swelling, or drainage of a skin sore
- Pain or burning when you urinate
- Nausea, vomiting, or diarrhea