Our Lung Transplant Program, recognized for excellence and innovation, is located on the campus of top-ranked Inova Fairfax Medical Campus and has performed 500 lung transplants to-date. We routinely exceed national averages for transplants performed, waiting time, and patient survival rates, according to Scientific Registry for Transplant Recipients (SRTR) reports. Review our latest outcomes.
Our transplant surgeons and advanced lung disease specialists offer new hope to individuals dealing with serious life-threatening lung disease that once was considered untreatable. Our team coordinates every facet of your care during the transplant process, from organ procurement and transport to the actual surgical procedure, inpatient recovery, and the vitally-important recovery and rehabilitation process that continues for many weeks following transplantation.
New Patient Information including information about insurance, medical records, forms, directions and parking.
Patient Information and Resources also includes details on educational and support services available to you and your family as you navigate this complex and challenging time. Learn more about support groups, resources and patient stories.
Please contact us if you need more information.
A Letter from Our Advanced Lung Disease and Transplant Program Director
from Steven Nathan, MD
On behalf of Inova Advanced Lung Disease and Transplant team, welcome. Transplantation is like no other procedure in terms of meticulous planning. Unlike popular TV shows, it doesn't happen overnight in hospital emergency rooms!
Our team carefully completes a series of important steps to ensure that patients are appropriate candidates and are well prepared for transplantation. This care and precision, we believe, is reflected in our higher-than-average survival statistics. Our most recent statistics show Inova lung recipients have the following survival rates: 1 month – 100% (with expected probability adjusted for patient and donor at 97.47); 1 year – 91.09% (with adjusted of 88.89) and 3 years – 66.67 (with adjusted of 70.26).
We also believe education is a key component to the preparation process because patients who are better informed tend to deal with post-transplant demands more successfully. Knowledge is empowering and demystifying for both patients and their caregivers.
We hope you'll explore this site with your family and friends and contact us if you need more information. Referring physicians, you may contact us at any time.
The Transplant Process
We understand that the prospect of a lung transplant is both intimidating and overwhelming for patients and their families. We want you to be informed and prepared. We hope you'll explore the following information with your family and friends to learn about the important steps before and after lung transplant.
You may be referred to the Lung Transplant Program by your primary care physician, pulmonologist, insurance case manager, or you may self-refer.
Referrals may be received by mail, fax, email or telephone. In the case of a verbal referral, the referring party is instructed to mail or fax all your pertinent patient records.
For more information, contact:
Advanced Lung Disease and Lung Transplant Clinic
Inova Fairfax Hospital
3300 Gallows Road
Falls Church, VA 22042-3300
Each referral is reviewed in detail by a transplant pulmonologist and pre-transplant coordinator. The referring physician is notified if the patient has a contraindication (an obvious reason that precludes transplantation) and is not eligible for a transplant. Of course, a patient not eligible for transplantation may benefit from other treatment. In this case, the patient may be evaluated further for other therapies.
If you appear to be a candidate for transplantation, a consultation is scheduled to gain additional information. During this visit, you and your family talk with the lung transplant coordinator and a transplant pulmonologist. If possible, bring original (or copies of) CAT scan(s) and chest X-rays to your first visit, in addition to the summary reports.
If you are considered a potential transplant candidate after the preliminary evaluation, you are invited to the Inova Transplant Center for further assessment and to meet members of the transplant team. (Please keep in mind that while a consultation is the next important step in the transplantation process, it does not guarantee a transplant.)
During the first visit, you will see the lung transplant coordinator and a transplant pulmonologist. Before this visit, our team works to obtain and review your medical records, radiographic studies, pulmonary function tests, and where appropriate, hemodynamic data and pathology slides. Please bring originals (or copies of) CAT scan(s) and chest X-rays rather than just the reports from these tests.
The transplant coordinator explains the transplant process. Because transplantation affects caregivers as well as the patient, family members or support persons should attend.
The transplant pulmonologist performs an assessment to determine if you are a good candidate for transplantation. The assessment confirms the underlying disease process and its severity, determines that all available therapies other than transplantation have been considered or tried, and carefully looks for potential contraindications that rule out transplantation.
This process continues during the comprehensive work-up phase of the evaluation when a number of medical tests will be scheduled and performed.
Indications - who is a candidate?
A patient may be considered for lung transplantation if he or she presents with end-stage lung disease from any of the conditions listed below and meets the age criteria.
- 60 to 70 for a single lung transplant
- Younger than 60 for a bilateral lung transplant
- Younger than 55 for a heart-lung transplant
- Conventional treatment has failed
- Life expectancy is limited (less than 2-3 years)
- Patient is at least ambulatory with oxygen to increase odds of a successful outcome
- Actively enrolled in Pulmonary Rehabilitation
- Patient meets the social and psychological profile to adhere to a disciplined medical regimen
- Patient is willing to live less than 1 hour drive time from Inova Fairfax Hospital for at least eight weeks following discharge from the hospital and 4 hours drive time from Inova Fairfax Hospital for at least 3 months following discharge from the hospital
Indications for single lung transplantation
- Chronic obstructive pulmonary disease
- Alpha-1 antitrypsin deficiency-induced emphysema
- Pulmonary fibrosis of any cause
- Pulmonary langerhans cell histiocytosis (eosinophilic granuloma)
- Lymphangioleiomyomatosis (LAM)
- Bronchiolitis obliterans
- Select patients with idiopathic pulmonary arterial hypertension (formerly known as primary pulmonary hypertension)/Eisenmenger's syndrome
Indications for bilateral lung transplantation
- Cystic fibrosis
- Select COPD patients
- Select patients with pulmonary fibrosis
- Select sarcoidosis patients
- Most patients with idiopathic pulmonary arterial hypertension/Eisenmenger's syndrome
Indications for heart-lung transplantation
- Eisenmenger's syndrome with irreparable cardiac defect(s) or irreversible cardiac failure
- Sarcoidosis with significant cardiac involvement
During a comprehensive work-up, you will be seen and evaluated by a transplant pulmonologist. Towards the completion of your transplant testing, you will have a lung transplant education day where you will meet the transplant surgeon, social worker, post lung transplant nurse practitioner, financial coordinator, nutritionist, pharmacist, and pulmonary rehabilitation expert. Additional consultations (i.e. psychiatrist, cardiology, nephrology, infectious diseases, etc.) are obtained as necessary.
Many of the following studies are obtained in potential lung transplant candidates. Please note, all tests are not a prerequisite for referral. You will be informed which tests are required.
- Pulmonary function tests (PFTs). Includes spirometry, lung volumes, diffusing capacity, arterial blood gas and others as needed
- 6-minute walk test
- Chest X-ray (CXR) at Inova Fairfax Hospital
- CT scan of the chest at Inova Fairfax Hospital
- Ventilation/perfusion (V/Q scan with quantitative perfusion). This study may be omitted in patients requiring bilateral transplants.
- Bronchoscopy (in select cases)
- Right and left heart catheterizations
- Serologies for CMV IgG and IgM, VZV Ig and IgM, EBV IgG and IgM, HTLV, RPR, measles, HIV, HepB Sag, HepB AB, Hep C AB
- Toxoplasmosis titers for heart-lung recipients only
- Pneumovax (if not previously received)
- Prevnar 13 (if not previously received)
- Annual influenza vaccine
- Hepatitis B if not immune
- Shingles (Shingrix)
- HPV (<26 years old)
- Tetanus every 10 years
- Sputum culture and sensitivity test, fungi, and AFB in bronchiectasis and cystic fibrosis patients
- Blood type – checked twice
- 24 hour creatinine clearance, urinalysis
- PAP smear, mammograms in all females once a year
- Duplex scan to r/o DVTs
- Arterial dopplers of lower extremities if there is clinical suspicion of peripheral vascular disease
- Carotid doppler studies in patients with suspected vascular disease
- Colonoscopy for patients over age 40 or Cystic Fibrosis
- Esophagogastroduodenoscopy (EGD)
- Right Upper Quadrant Ultrasound/Liver Ultrasound
- Barium Swallow Study
- Gastric Emptying Study
- 24 hour pH Probe and Manometry
- Bone densitometry
- Dental clearance
- Dermatology clearance
- CBC with differential
- Lipid panel as needed (LDL, HDL, cholesterol, and triglycerides)
- Thyroid function studies
- Stool for occult blood x 3
- PSA and testosterone level in all males over age 50
- Serum immunoglobulins in all patients with bronchiectasis/chronic infections
- Blood type, panel reactive antibody screen
- Immune cell function assay
- Drug toxicity/urine screen
The following factors are carefully considered during the pre-transplant process, since these symptoms or conditions can make a lung transplant inadvisable.
- Smoking. Patients should have abstained from smoking for at least six months prior to placement on the list for transplantation.
- Psychiatric disorders and psychosocial problems that are not resolved and will likely negatively impact the patient's outcome
- Recent drug and/or alcohol abuse/medical marijuana
- Noncompliance with medical care or treatment plans even in the absence of documented psychiatric problems
- Active malignancy within the past 2 years (except basal cell and squamous cell cancer of the skin) with a 5-year disease free interval for extracapsular renal cell tumors, breast cancer stage 2 or higher, colon cancer staged higher than Dukes A, and melanoma, level III or higher
- A history of primary or metastatic lung malignancy
- Ventilator dependency. Patients receiving non-invasive ventilation who meet all other criteria are candidates for lung transplantation.
- Morbid obesity
- Disabling arthritis or other condition limiting exercise
- Progressive neuromuscular disorders
- Systemic disease such as:
- Renal (creatinine clearance <50/mls/min)
- Liver disease (cirrhosis, chronic active, chronic persistent hepatitis, hepatitis B, hepatitis C with advanced or active disease)
- Insulin-dependent diabetes mellitus, which is not well-controlled or has resulted in any end-organ dysfunction
- Chronic pancreatitis
- Active connective tissue disorder
- Coronary artery or other cardiac disease
- Systemic hypertension that requires more than 2 drugs for adequate control
- Severe right-sided heart failure
- Multidrug resistant/pan resistant organism(s)
- Insulin dependent diabetes mellitus
- Symptomatic osteoporosis
- Severe musculoskeletal disease affecting the thorax
- Poor nutritional status (BMI <17 or >32)
- Seizure disorder that is not well-controlled
- Steroid dependency (>20 mg/day)
- Significant pleural disease/prior chest surgery
- Colonization with fungi or atypical mycobacteria
Collaborative Practice Committee Recommendation
Once the comprehensive work-up has been completed, a potential candidate has his or her case presented at Inova's weekly lung transplant collaborative practice committee meeting.
This committee consists of the multidisciplinary team that evaluated you. The committee reviews and discusses in detail each case before making a recommendation (see below).
Every effort is made to inform you of the committee's decision within three working days of the meeting.
The committee will make one of the following recommendations:
- Accept the patient for transplantation
- Request further tests before making a determination
- Defer on listing the patient if his or her case is not advanced enough or if there are concerns regarding compliance, psychosocial support or nutritional status that need to be resolved
- Suggest other forms of therapy prior to listing
- Reject the patient for transplantation
Once you are accepted for transplantation, we will obtain listing authorization from your insurance. Once you have received listing authorization, you are listed with the United Network for Organ Sharing (UNOS). This national organization utilizes a sophisticated database and allocation system to match transplant recipients with available organs.
The names and medical profiles of newly-accepted transplant patients are added to the UNOS database and the waiting list automatically updates. When an organ donor becomes available, the system generates a list of patients who match the donor organ.
How matches are made
Matches are based on blood type and the patient's size, height and lung allocation score (LAS). LAS is a lung allocation system implemented in 2005 and most currently revised in 2017 to maximize the benefits of precious donor resources. When LAS was implemented, the waiting time for donor organs at Inova Fairfax Hospital fell dramatically from a median wait time of 170 days to a median of 95 days.
Each patient receives an LAS score based on his or her unique medical information and numerous other factors. The score helps estimate the severity of each candidate's illness and the chance of success following transplantation. Donated organs are first distributed locally within a 250 nautical mile radius. If a suitable match for the organ does not exist within this region, the organ is then offered nationally.
Coordinating on a local level
Patients are also listed with UNOS through our local Organ Procurement Organization, Washington Regional Transplant Community (WRTC). WRTC serves as the vital link between the donor and recipient. They retrieve, preserve, and transport organs for transplantation.
WRTC works closely with UNOS and Inova Transplant Center physicians to coordinate and streamline the transplant process. Currently Inova Transplant Center is the only lung transplant program within WRTC's region.
Once you are accepted as a transplant candidate and listed as a donor recipient, the wait begins. The average waiting time at Inova Fairfax Hospital for a lung transplant is a median time of 3 months, well below the national average.
We understand that waiting for a transplant is a stressful time. The lung transplant team is readily available to provide whatever support and assistance you need.
You can help facilitate the transplantation process by meeting these important requirements:
- Be available by phone 24 hours a day, 7 days a week
- Remain within a 4-hour drive to Inova Fairfax Hospital
- Contact the transplant coordinator as soon as possible if becoming ill, hospitalized or unavailable for any reason
- Continue pulmonary rehabilitation three days per week
- Attend monthly Lung Transplant Education Group
Our commitment to you and your family remains steadfast during your waiting time. You can be certain that your lung transplant team will:
- Remain in close contact with you and your physicians and monitor your medical condition every 1-2 months
- Regularly discuss any psychosocial, financial, physical or emotional concerns you have throughout this time period
- Provide access to social workers, monthly support groups and the resources of the Advanced Lung Disease Program to assist in coping and alleviating the stress associated with your condition.
The Organ Donor
Organ donation is considered a gift of life.
A typical organ donor is a person who has died from a traumatic injury to the brain such as a stroke, aneurysm or in a car accident. Brain death is declared only after strict medical criteria are met, and then only by a physician not involved in the transplantation process.
Once brain death criteria are fulfilled and family permission is granted, lungs and other organs can be procured. Lungs are very sensitive and deteriorate rapidly, so great care must be taken during the donation process.
In the United States, local Organ Procurement Organizations (OPOs) manage the donor process based on UNOS guidelines. The OPO for Inova Fairfax Hospital is Washington Regional Transplant CommunityWRTC).
The transplant team and OPO representatives are dedicated to finding the most acceptable match for each recipient. Unfortunately, due to UNOS regulations, we are unable to release donor-specific information to the recipient or his or her family at the time of transplant. There is a UNOS-approved process to facilitate contact between the recipient and donor's family after transplantation.
Technical requirements for donor suitability are exacting to help ensure the best match possible. General donor guidelines include age (less than 65); absence of significant lung disease, including asthma; limited cumulative cigarette smoking history (less than 30 pack-years); satisfactory bronchoscopic appearance without evidence of aspiration; clear lung fields on CXR; adequate oxygenation (PaO2>300 on FiO2 of 100%), and acceptable lung compliance (elasticity).
Criteria which may exclude a donor's donation include viral infections such as HIV, encephalitis and hepatitis, untreated septicemia or primary lung infection, malignancy other than primary localized brain tumor and current IV drug use.
The donor and recipient should at least match by blood type and thoracic size dimensions. Size is generally gauged by donor and recipient height, since height is the strongest determinant of lung volumes.
Surgery and Post-Op
We will notify you as soon as compatible donor lung(s) become available. Once you receive your call, plan to arrive at Inova Fairfax Hospital within 4 hours unless told otherwise by our staff.
Please do not eat or drink anything. You can take your regularly-scheduled medications with a small sip of water.
Prior to surgery
A final evaluation of the donor lungs is made before you are prepped for surgery. During this time we perform your pre-operative blood work and chest X-ray and administer antibiotics. Once we receive approval to proceed, you are taken to the operating room and prepared for surgery.
Lung transplantation involves removing one or both diseased lungs and surgically placing the healthy, new donor lung(s). During surgery, some patients are put on a heart-lung bypass machine to support blood circulation until the new lung(s) are placed.
For a single lung transplant, an incision is made below the shoulder blade and along the side of the chest. The old lung is removed and the new lung is connected both at the mainstem bronchus level and the vessels (pulmonary artery and pulmonary vein). The ribs are then brought back together and the incision is closed.
For a bilateral lung transplant, the incision is made across the middle of the chest, from one underarm to the other. The lungs are placed and connected one at a time before the ribs are brought back together and the incision closed.
Following the surgery, you will receive attentive care from our highly-trained staff in the 18-bed cardiovascular surgical intensive care unit (CVICU). On average, patients remain in the ICU about 3 days.
Once you are fully stabilized, you are transferred to a private room on a nursing unit where staff is experienced in the care of transplant patients. This portion of your hospital stay averages about 10 days. This may vary based on your post-op course.
You will still be sedated when you arrive in the surgical CVICU and breathing with the assistance of a ventilator. We will perform a bedside bronchoscopy to clear blood clots and secretions from your lungs. Most patients are taken off the ventilator (extubated) within 24 to 48 hours after surgery.
Once you are breathing on your own, it is important to actively participate in the breathing exercises and other forms of pulmonary rehabilitation that will be demonstrated by your therapists. Ambulation is important to prevent blood clots, clear secretions, and fully expand your new lung(s).
All transplant patients have chest tubes inserted into the pleural space surrounding their new lung(s). These flexible tubes remove fluid and air from the chest cavity and are removed 3 to 5 days following surgery. As your recovery progresses, we will remove other catheters placed before and during surgery. These include the Foley catheter that drains urine from the bladder and IV catheters used to deliver fluids and medications and monitor vital signs.
Our goal is to help you effectively manage pain you experience as a result of your surgery. Most patients complain of discomfort at the incision site and entry point of chest tubes. Your nurses will administer intravenous pain medications immediately following surgery.
Once you are off the ventilator, anesthesia will place catheters in the paravertebral space in your back that allows for a continuous infusion of numbing medications. You will also receive intravenous Tylenol for a short time after extubation. Other medications will be available as needed for pain. Narcotics are used sparingly and tapered off as you approach discharge due to side effects. Pain decreases as healing continues. At the time of discharge, all patients go home on oral pain medication.
You will receive an education binder post- transplant. The transplant team will teach you and your caregivers what to expect during the recuperation period and especially once you return home. When you get close to discharge, a formal education session will be scheduled for you and your caregivers to meet with the transplant nurse practitioner, pharmacist, and dietician. This education session will take approximately 3 hours. You will learn about the medications you will be taking, diet, exercises and how to monitor your progress at home.
Distance to Inova Fairfax Hospital
If you live more than an hour's driving distance from Inova Fairfax Hospital, please make arrangements to stay close to the hospital for the first 4-6 weeks after discharge. Out-of-state patients should make arrangements for close-in temporary housing for at least 3 months after transplant surgery.
After discharge from the hospital, you will be seen regularly in the lung transplant clinic by a post-transplant nurse practitioner or a transplant pulmonologist.
The frequency of your visits depends on when you received your new lungs and your overall medical condition. Expect twice-weekly visits during the first month after transplant. In addition to monitoring your physical condition, we will provide as much information as possible to you and your family to facilitate your return to an independent and fulfilling life.
Caring for new lungs is a lot of work. Once discharged from the hospital, each day you will monitor your temperature, blood pressure, weight, lung function (through daily microspirometry sessions) and possibly blood sugar.
You must carefully follow your daily medication schedule and participate in at least 6 pulmonary rehabilitation sessions. We will schedule you for routine bronchoscopies about every 3 months during the first year so your pulmonologist can monitor the health of your new lungs by checking for infection and rejection.
Take your temperature twice a day, before breakfast and before dinner. Record the results in your daily record. Also, take your temperature any time you feel chilled, hot or achy, as this may be the first sign of infection or rejection. Contact the transplant team if your temperature ever exceeds 99 degrees F.
Take your blood pressure in the morning before breakfast and before dinner and record the results in your manual. Notify your transplant team if your blood pressure is:
- Systolic (top number) greater than 180 or less than 100
- Diastolic (bottom number) greater than 100 or less than 50
Your blood pressure machine also takes your pulse. Notify the transplant team if your pulse is greater than 140 or less than 60.
Weigh yourself every morning after you urinate and before you eat breakfast. Notify your transplant team of any weight gain greater than 3 pounds in a 24-hour period.
While you are still in the hospital, you will be instructed to purchase an at-home microspirometer to check your lung function twice a day. Read further instructions below.
Once home, measure your FEV1 and FVC every day at the same time and record the numbers in your daily record. You will also receive an incentive spirometer and acapella for airway clearance. Use these 3 times a day during the initial post-transplant period following discharge.
Notify your transplant team if either your FEV1 or your FVC decreases by 10% for 2 days.
Blood sugar (diabetics only)
If you were diabetic before your transplant or have developed diabetes since your surgery, you will need to monitor your blood sugar 3 to 4 times daily. Record the results in your daily record. Notify the transplant team or your endocrinologist if your blood sugar is less than 60 or greater than 350.
This valuable monitoring and diagnostic test is performed for a number of reasons. Read more below.
Bronchoscopy is another tool for monitoring and diagnosis. A bronchoscope is a thin, long instrument equipped with a light and camera. It is inserted into a sedated patient's airways and lungs to examine for abnormalities and rule out infection and rejection.
Bronchoscopy is performed by a pulmonologist. The procedures takes place in the bronchoscopy suite located adjacent to the pulmonary function laboratory at Fairfax Inova Hospital. There are two types of bronchoscopy procedures.
- Surveillance bronchoscopy is performed on a routine basis following transplantation to ensure there are no underlying problems with your new lungs. We generally will schedule you for a bronchoscopy between 7 and 10 days after your transplant and again at 1 month, 3 months, 6 months and possibly 9 and 12 months following transplantation.
- A clinically-indicated bronchoscopy is performed when a patient's condition changes and the physician needs to know what is happening in the lungs. Symptoms that may necessitate a bronchoscopy include shortness of breath, a drop in lung function numbers, a change on a patient's X-ray or unexplained fever.
Depending on timing, a clinically-indicated bronchoscopy may replace the next routinely-scheduled surveillance bronchoscopy.
Before a bronchoscopy
Do not eat or drink anything prior to your bronchoscopy without first talking with your physician/NP. You may take your medications with sips of water. Bring your medicine with you to take after the procedure.
Consult with your phsician/NP prior to your procedure if you take a blood thinner or medication for blood pressure or diabetes.
Arrange for a family member or friend to accompany you to the procedure and to remain in the waiting area during the procedure. You can return home after your bronchoscopy but will be drowsy and unable to drive.
The trachea is entered and both sides of the lung are inspected in detail. The physician uses the bronchoscope to suction out any secretions. Sterile fluid is put into the lung and then suctioned out into a collection container.
The specimens collected are called bronchial washings or bronchoalveolar lavage. These fluids are sent to the microbiology laboratory to check for viruses, bacteria or fungi which may require treatment and for abnormal cells (cytology).
Close attention is paid to the bronchial anastomosis, which is the hook-up between the native bronchus and the donor bronchus. The physician looks for scar tissue or stricture formation.
A biopsy (tissue sample) of the lung is usually obtained, especially if rejection is suspected. The physician passes biopsy forceps through the bronchoscope into the lung and collects tiny snips of lung tissue by opening and closing the forceps. The physician uses fluoroscopic (X-ray) guidance to ensure that the forceps are properly positioned.
Complications from biopsies may include bleeding or pneumothorax (also known as a collapsed lung). Bleeding is controlled through suctioning or by passing medication such as epinephrine through the bronchoscope to constrict the bleeding vessel(s). You may cough up a little blood for up to 24 hours.
You will have a chest X-ray after the bronchoscopy. A pneumothorax is trapped air between the lung and the chest wall. Depending on the size of the pneumothorax, a chest tube may be inserted to evacuate the air. You may also develop a low fever after the procedure. Contact your transplant coordinator if your symptoms worsen or persist for more than 24 hours.
Lung tissue biopsies are graded on a scale of 0-4. Zero (0) means no rejection. Four (4) means severe rejection. Your pulmonologist will review the biopsy with a pathologist and evaluate all of your symptoms to determine the best course of treatment for you. Biopsy results are usually available the next day.
We follow our post-transplant patients very closely and will see you frequently in the lung transplant clinic after your surgery. Outlined below are our general clinic guidelines, but a sudden change in your condition may warrant additional unscheduled tests such as chest X-rays, CAT scans, 6 minute walk test (6MWT) to detect activity-related low oxygen levels, blood work, spirometry, or bronchoscopy.
We make every attempt to maintain an efficient clinic schedule and to see you at your scheduled time. However, lung transplant patients who present with unexpected complications require the care of multiple providers and may need to be seen ahead of waiting patients. Be assured that you will receive our full attention once it is your turn to be seen.
Our clinic patients can develop various infections. There is no reliable way to isolate sick patients from well patients in the waiting area. Always wear a mask for your clinic visits 4 to 6 weeks after transplant.
Frequency of visits
After you are discharged from the hospital, we will see you in the clinic for a visit twice a week for the first month. If clinically stable, your appointments will be scheduled as weekly visits for 1 month, every other week for 3 months, monthly for 3 months and then once every 3 months after the first year. If there is a change in your condition we will need to see you between routine appointments.
Hours of operation
The post-transplant clinic sees patients from 9 a.m. to 4 p.m., Monday through Friday.
What happens during the visit
Regular appointments include spirometry (done at our clinic or pulmonary function lab), blood work (done in our clinic) and a clinic visit with our staff. A chest X-ray (performed in the Radiology department) may be requested as well.
A nursing assistant will check your vital signs and do blood work. The transplant coordinator will review your vitals in your daily record and confirm that you are taking your medications appropriately.
The transplant nurse practitioner or pulmonologist will perform an exam, review your studies, discuss any problems you may be experiencing and make any needed changes to your care plan. At the end of your visit, staff will confirm your next appointment.
Before your visit
Do not take your morning dose of immunosuppression (Prograf, Cyclosporine, Rapamune, Everolimus) or antifungal (posaconazole, voriconazole, itraconazole) before your blood is taken. We routinely test for complete blood count (CBC), chemistries, immunosuppression and antifungal levels and CMV infection. Blood test results are usually available the same day as your visit. We will notify you by telephone if your test results indicate a need to change your regimen.
Please bring your medication list and daily records with your vital signs and spirometry with you to every visit.
Spirometry is one of the ongoing pulmonary function tests (PFTs) we use to monitor lung function following transplantation. As you know, vigilance is a key to success in lung transplant patients, and spirometry is one of the simplest and best tools we have to catch even small changes in lung function.
Spirometry is routinely performed at each of your clinic visits, but you will need to also measure your lung function at home every day. You will receive your own personal portable microspirometer, and instructions how to use it, before leaving the hospital.
To perform a spirometric maneuver, take in as deep a breath as possible and then blow out as hard and as long as possible through your mouth into the microspirometer. You must maintain a tight seal between your mouth and the mouthpiece. We also recommend you wear a nose clip for best results. The goal is for every molecule of your exhaled breath to be captured by the microspirometer.
The home spirometer records two numbers. Forced vital capacity (FVC) represents the total volume of air blown out. Forced expired volume in 1 second (FEV1) represents the amount of air blown out in the first one second of exhaling.
Perform 3 maneuvers at the same time each day and record the highest FVC and FEV1 readings you obtain, even if they come from different maneuvers. Note that the readings obtained at home may run a little lower than those recorded in the PFT lab.
Call the Lung Transplant Center if you experience a drop of 10% in either of the numbers over 2 days time. Depending on your situation, you may be asked to come to the PFT laboratory for further testing.
Your physician will prescribe several medications which you will need to take regularly for the rest of your life. The transplant team will provide you with detailed information about how and when to take your medication.
Transplant patients generally receive a 3-drug regimen including a calcineurin inhibitor (cyclosporin (CSA) or tacrolimus), a purine synthesis inhibitor (mycophenolate mofetil (MMF) or azathioprine (AZA)) and corticosteroids.
The following information about immunosuppressive drugs is detailed and quite technical. Feel free to talk to the transplant team about your medication and any side effects you may experience. Also, keep in mind that each transplant patient responds differently to medication. It is unlikely you will experience all of the side effects listed here.
|Mechanism of action||Side effects|
|CSA||Blocks calcineurin (inhibits T-cell activation)||Nephrotoxicity, hypertension, neurotoxicity, hirsutism, gingival hyperplasia, hepatotoxicity|
|Tacrolimus||Blocks calcineurin (inhibits T-cell activation)||Nephrotoxicity, hypertension, neurotoxicity, diabetes mellitus|
|MMF||Purine synthesis inhibitor (inhibits lymphocyte replication)||Leucopenia, thrombocytopenia, gastrointestinal symptoms|
|AZA||Purine synthesis inhibitor(inhibits lymphocyte replication)||Hematotoxicity, alopecia, hepatotoxicity, pancreatitis, rash, gastrointestinal symptoms, teratogenicity|
|Prednisone||Alteration of T-cell proliferation, inhibition of cytokine production, suppression of macrophage function||Cushing’s syndrome, hypertension, hyperglycemia, infections, osteoporosis, cataracts, mood alterations|
|Sirolimus||Suppression of cytokine-driven T-cell differentiation||Hypertriglyceridemia, hypercholesterolemia, rash, hypokalemia, leukopenia, thrombocytopenia, gastrointestinal symptoms|
Cyclosporin A (CSA, Neoral, Gengraf, Sandimmune, Eon)
The major cyclosporin side effects include nephrotoxicity (kidney problems), which occur in one-third of patients. Fluid retention (swelling in feet and legs), high potassium and chloride levels may accompany elevated creatinine levels. It is often associated with high trough levels, and is mostly reversible upon dose reduction.
Hypertension, both systolic and diastolic, occurs in 50% of patients and usually develops within few days to a few months after CSA administration. Neurotoxicity, including headaches and fine hand tremors, occur in 1 in 3 patients and may improve without stopping therapy.
Peripheral neuropathy with symptoms of numbness, tingling and burning may also occur, as can mild alterations in mental status. Seizures, when CSA is used with high-dose steroids, have been reported.
Mild hirsutism (increased hair growth) on the face, arms, eyebrows and back occurs in 1 in 3 patients. Gingival hyperplasia (swelling of gums) occurs in 1 in 10 patients and may improve with vigorous oral hygiene.
Tacrolimus (FK506, Prograf)
A side-effect profile of Prograf is similar to CSA and includes similar rates of nephrotoxicity (kidney problems), neurotoxicity (tremor, headaches) and hypertension. Unlike cyclosporin, it can also cause diabetes mellitus and may need to be replaced by cyclosporin in patients with difficult-to-control diabetes.
Azathioprine (AZA, Imuran)
Major side effects of azathioprine include hematologic toxicity, temporary hair loss, hepatotoxicity, pancreatitis, rash and gastrointestinal (GI) side effects. Hematologic toxicity manifests as dose-dependent low white blood counts, although all bone marrow lines may be suppressed.
Liver function abnormalities may require dosage decreases or discontinuation of the medication. Other infrequent side effects include rash, nausea and vomiting. AZA should never be taken with allopurinol (medications for gout), as the combination can cause severe bone marrow suppression.
Mycophenolate mofetil (MMF, Cellcept)
Potential toxicities of MMF include low blood counts and GI side effects such as nausea, vomiting and diarrhea. GI side effects may be reduced by splitting the daily dose into three or four smaller doses. Sirolimus (rapamycin, Rapamune) can cause high triglycerides and cholesterol in a dose-dependent fashion.
It can also result in bone marrow suppression with low blood counts, especially when used with MMF. Low potassium levels, rash, nausea and vomiting have been reported.
Corticosteroids (prednisone, prednisolone, deltasone)
Prednisone toxicities are numerous and include high blood sugars and increased appetite, fluid retention, high blood pressure, cataracts, mood alterations, increased risk of infections, musculoskeletal symptoms and osteoporosis. Efforts are usually made to reduce the steroid dose as quickly as possible because of its multiple side effects.
According to the International Society of Heart and Lung Transplantation (ISHLT), just over 4,600 lung transplants were performed world wide in 2016.
Survival for all lung transplant recipients was analyzed. Benchmark survival rates were:
- 88% at 1 year (in the US)
- 72% at 3 years (in the US)
Survival depends on many factors, including the pre-transplant diagnosis, recipient age, weight and overall health, type of transplant, various donor characteristics and other factors.
More than 80% of patients had no activity limitations at 1, 3, 5 and 10 years after transplant.
Go to ISHLT's Web site. Choose "Overall Lung and Adult Lung Transplantation Statistics" for a slide show depicting informative and detailed statistics.
We Want You to Be Aware of These Potential Complications.
Lung transplantation is a complex procedure and complications do occur during and following surgery. Many of the complications outlined in this section are the direct result of the critically-important immunosuppressive medications you need to take as a transplant recipient.
We want you to be aware of these potential complications. At the same time, we are fully committed to minimizing or preventing complications whenever possible. Please come to us with your questions and concerns.
Your body's immune system protects you from foreign substances such as bacteria, fungus and viruses that can cause infection.
Unfortunately, your immune system identifies your newly-transplanted lung(s) as a foreign substance and goes to work fighting off this intruder.
When your body's immune system attempts an attack, it is called rejection. Almost everyone develops rejection at some time. You will take immunosuppressive medications to fool your body and to prevent your immune system from attacking and damaging your new lung(s).
Rejection usually occurs in the first 6 months after transplantation, but it can occur at any point, especially if you do not take your medications correctly. This is one of the reasons we schedule you for frequent visits to the post-transplant clinic.
Learn the signs and symptoms of rejection. If you experience any of the following signs and symptoms of rejection, report them to your transplant team immediately:
- Fatigue or weakness
- Shortness of breath
- Decrease of 10% in FEV1 or FCV readings over 2 days
A bronchoscopy with lung biopsy is used to confirm rejection and/or an infection.
Your transplant team has many medications available to treat rejection. Treatment is usually given intravenously and includes higher doses of steroids or other medication. Depending on your situation, you may receive your treatment at home or in the hospital.
The heart is the "bridge" between the lungs and the rest of the body. Both organs sit in the chest cavity with the heart surrounded by the lungs. The right side of the heart receives blood from the body and pumps it into the new lung. The new lung provides oxygen to the blood and removes carbon dioxide. The blood is then returned to the left side of the heart and pumped out to the rest of the body. As such, the heart and lungs function in tandem to supply and deliver oxygen to the rest of the body.
Despite this close relationship, long-term heart problems after a lung transplant are rare. The transplant team carefully screens for pre-existing heart disease prior to transplant to minimize problems.
You may, however, experience heart-related problems immediately following transplant. You will receive medication to counter low blood pressure, a common problem which occurs due to blood loss, dehydration, coming off the heart-lung machine or a shift in the heart's position within the chest cavity.
Arrhythmias (irregular heartbeats) may also occur post-operatively but usually are short lived and easily controlled with medication. Some patients take medication for arrhythmia on an ongoing basis.
Despite close scrutiny of the heart vessels prior to transplantation, myocardial infarctions (heart attacks) can still occur during or soon after the transplant procedure. This may be precipitated by prolonged low blood pressure or low oxygen levels.
Some of the immunosuppressive agents (steroids, tacrolimus, cyclosporin, rapamycin) can boost blood cholesterol and triglyceride levels. Patients may need a lipid-lowering agent as one of their long-term post-transplant medications. Interestingly, statins (a class of cholesterol-lowering agents) have been shown to decrease the incidence of rejection and are frequently taken by transplant recipients.
Infrequently, elevation of pressure in the lungs (pulmonary hypertension) may develop in the post-transplant period.
Bronchiolitis obliterans (BO) is more commonly known as chronic rejection. Between 25% and 50% of lung transplant recipients experience BO.
Its cause is unknown but may be related to previous episodes of acute rejections or infections. There is no specific cure for BO, but there are therapies that may stop or reverse its course. Your physician will discuss an individualized plan of care if you develop chronic rejection.
Chronic rejection is characterized by a narrowing and disintegration of the small bronchioles. These are the smallest of the airways through which air travels into and out of the alveolar sacs. The alveolar sacs are where gas exchange (oxygen taken up and carbon dioxide eliminated) occurs within the lungs.
Symptoms of chronic rejection include a drop in spirometry levels and subsequent shortness of breath. Patients who develop chronic rejection are also at greater risk for lung infections.
A bronchoscopy with biopsy is performed to diagnose chronic rejection. Some of the other conditions which need to be ruled out include airway complications, infection, acute rejection, congestive heart failure and pulmonary hypertension.
Because the cause of BO is unknown, in 1993 the International Society for Heart and Lung Transplantation coined the term "bronchiolitis obliterans syndrome" (BOS) to describe deterioration of lung function for which there is no other identifiable cause. Patients have BOS if there is a 20% reduction in their FEV1 (forced expired volume in 1 second) from their previously established baseline.
Unfortunately, chronic rejection is a difficult condition to treat. There are several medications shown to arrest or stabilize progression of the condition. Radiation therapy has also shown to be effective. New medications currently in clinical trials hold promise for improvements in future treatment and prevention of chronic rejection.
The gastrointestinal (GI) tract is often the "spoiled child" of transplantation recipients because it tends to act up when the recipient is otherwise feeling well.
GI problems are usually medication related or signal an infection. If GI upset is accompanied by a fever, it is more likely to be infection related. GI upset can be characterized by one or all of the following:
- Vomiting (If unable to hold down medications, contact the transplant team. IV fluids or medication may be required.)
- Stomach cramps
The most common drugs used post transplant that may result in these symptoms include:
- Cellcept (mycophenolate mofetil)
- Prograf (tacrolimus, FK506)
- Cytovene (ganciclovir)
- Fosamax (alendronate)
Infectious agents affecting the GI tract
Clostridium difficile colitis (C.diff) most often affects patients who recently have taken large doses of antibiotics. Symptoms include diarrhea, which can be explosive and foul smelling, fever and occasionally vomiting.
C.diff also can have the opposite effect and cause a paralysis of the GI tract. On rare occasions this can cause extreme dilation of the colon or a so-called toxic megacolon, which can be life threatening.
C.diff is referred to as pseudomembranous colitis because it is characterized by plaques in the GI tract that resemble membranes. A stool sample generally sufficient for diagnosis, but sometimes a gastroenterologist will perform a sigmoidoscopy or colonoscopy to view the interior of the rectum and colon. C.diff is effectively treated with antibiotics (vancomycin or Flagyl).
CMV (cytomegalovirus) can cause a troublesome infection in the GI tract or elsewhere in the body. Symptoms include nausea, vomiting and diarrhea. CMV can cause ulcers and plaques in the GI tract. Ulcers in the colon can lead to profuse bloody diarrhea while ulcers in the upper GI tract (stomach, duodenum) often mimic peptic ulcer disease. CMV can also cause hepatitis.
Viral gastroenteritis includes the same "24-hour-bugs" and general maladies affecting everyone else. Unfortunately, transplant recipients are more prone to these pesky viruses because their immune systems are suppressed.
Viral gastroenteritis is generally not dangerous and tends to run a short, self-limiting course. Excess vomiting may be a problem if patients can't hold down their medications. If this is the case, hospitalization may be required to give intravenous fluids and medications.
Diabetes (high blood sugar levels) is the most common hormonal problem patients face post transplant and generally is the result of other medications taken, specifically Prograf and steroids.
Patients may require oral insulin or insulin injections. Severe and uncontrolled diabetes may require a change from tacrolimus to cyclosporin. As steroid dosages are reduced over time, the severity of the diabetes may lessen, along with the need for medication.
Testosterone levels may test low in males following transplantation but can be a pre-existing condition and associated with the underlying primary disease process.
Transplant recipients have lowered or suppressed immune systems, making them more susceptible to infection.
Here are some ways to protect yourself:
- Wash your hands frequently.
- Keep your hands away from your mouth and eyes.
- Stay away from people with colds and other infections.
- Avoid crowded enclosed areas for the first three months post transplant and after any treatment for rejection.
- Ask friends to visit only when they are well.
- Wash your hands after coughing and sneezing. Throw used tissues into the trash immediately.
- Do not eat or drink using the same glass or eating utensils used by anyone else.
- Ask family or friends who live with you to follow these same guidelines when they are sick.
- Avoid gardening or working in soil for six months after your transplant. Wear gloves once you resume gardening activities.
- Avoid handling animal waste and avoid contact with stray animals. Do not clean bird cages, fish or turtle tanks, or litter boxes. Cover your cat litter box.
- Avoid vaccines that consist of live viruses, such as Sabin oral polio, measles, mumps, German measles, yellow fever or smallpox. The live virus can cause infection. If you or any family member intends to receive vaccinations, notify your transplant team.
- Practice thorough oral hygiene every day. The mouth and teeth can be a source of infection. Regular brushing and flossing are essential, as are regular dental checkups.
- Avoid construction sites. Discuss in advance any possible home remodeling or construction projects with your physician or coordinator.
- Wear a mask when you come to the clinic. Park away from active construction sites.
Learn the warning signs of infection and report them to your transplant team immediately:
- Fever over 100 degrees F
- Flu symptoms including chills, aches, fatigue, headaches, dizziness, nausea and vomiting
- "Wet" productive cough and/or shortness of breath
- Nasal congestion with thick greenish or yellow drainage
- Sore throat
- Pain, burning during urination or feeling constant urge to urinate
- Any wound that is red or swollen with some drainage
- Mouth sores or thrush
- Rashes or skin lesions
Types of infection
Familiarize yourself with some of the different types of infections that can affect transplant patients. Notify your transplant team immediately if you suspect you have an infection.
- Cytomegalovirus (CMV) infects between 30% and 80% of all people (depending on where they live) at some point in their life. Like many viral infections, this virus is not dangerous to the public but can be serious in transplant recipients due to their weakened immune systems. Symptoms include fatigue, high fever, aching joints, headaches, nausea, vomiting, diarrhea, visual disturbances and pneumonia.
- Herpes zoster (shingles) is a recurrence of chicken pox appearing as a rash or as small water blisters on the chest, back or hip. Shingles may or may not be painful.
- Candida can cause a variety of infections in transplant recipients. Most commonly it infects the mouth and throat, but also can be found in surgical wounds, eyes, respiratory and urinary tracts or the bloodstream. Candida that infects the mouth and throat is called thrush. Thrush produces white, patchy lesions, pain or tenderness, a white coating on the tongue and difficulty swallowing. You will take mycelex troches to prevent thrush. Candida that infects the vagina is more commonly known as a yeast infection and is identified by an abnormal white or yellow discharge from the vagina.
- Pneumocystis carinii is a fungal infection that causes a form of pneumonia called PCP. PCP can be prevented with Bactrim. If you are allergic to Bactrim, another medication will be substituted. Symptoms of PCP are shortness of breath, dry cough and fever.
Different types of bacteria can affect nearly any area of the body. Common bacterial infections include urinary tract infections, bronchitis, pneumonia, sinusitis, wound infections and blood infections. As with any potential infection, it is important you contact your transplant team immediately if you believe you have an infection.
The musculoskeletal system is especially vulnerable after transplantation. Extended hospital stays due to fractures or muscle weakness can lead to other problems such as limited mobility and pneumonia. We want to minimize as many of these problems as possible.
Osteoporosis is thinning of the bones. Osteoporosis can be a major problem post transplant and places patients at high risk for fractures and subsequent complications such as blood clots and pneumonia from lack of activity.
Patients often have osteoporosis prior to transplantation, especially those with chronic obstructive pulmonary disease (COPD), cystic fibrosis or a history of treatment with high doses of steroids. Compression fractures of the back are most commonly seen, but fractures of the arms, legs, or hips can occur.
Great care should be taken to prevent falls. All patients undergo bone density tests prior to transplant and receive aggressive treatment for both osteopenia (bone mass decrease) or osteoporosis (bone density loss). Calcium with Vitamn D supplements and bone mass restorative medications (such as Fosamax) are used routinely after transplant.
Muscle weakness is seen in the post-operative period and often results in prolonged hospitalization. Patients at highest risk include those who are seriously unfit, had limited mobility prior to transplant or received high doses of steroids.
Other medications such as cyclosporin and Prograf can affect the nervous system and perpetuate weakness. Muscle weakness often resolves slowly over time. The goal is to keep patients free of complications during this slow recovery period.
Transplant medications (cyclosporin or tacrolimus/FK506) are the major reason for neurological problems in recipients. Neurological side effects may be worsened by or accompany low magnesium levels, hypertension, low cholesterol, high-dose steroids or beta-lactam antibiotic therapy.
Minor neurological complications occur in about 20% of patients receiving tacrolimus and most commonly include hand tremors, sleep disturbances, headaches and mood changes. These side effects tend to be most pronounced soon after transplant.
Fortunately, more serious neurological complications are uncommon and occur in less than 5% of patients. These may include:
- Encephalopathy as a manifestation of a cerebrocerebellar syndrome resulting in seizures and cortical blindness
- Akinetic mutism, characterized by an apparent state of wakefulness, with no voluntary muscle activity
- A syndrome of unknown cause characterized by high ammonia levels in the blood that can result in severe neurological events or death
Hemorrhage (bleeding) can be a problem in the immediate post-transplant period. Bleeding usually occurs from the pleural space between the lungs and the inner chest wall. Patients who need to be placed on a heart-lung machine during their transplant are more predisposed to bleeding since their blood is thinned. Patients with excessive scarring in the pleural space from prior chest surgery, infection or placement of chest tubes are also predisposed to bleeding.
Post-transplant bleeding is usually easy to diagnose since all patients have chest tubes draining the pleural space. Some bleeding is a normal result of surgery, but heavy bleeding may require intervention. Depending on a patient's situation, he or she may receive blood products or coagulants to slow the bleeding. In some cases the patient must be returned to surgery to find the source of the bleeding.
Patients may also develop bleeding in their gastrointestinal tracts, a fairly common occurrence with any major surgery. Most patients receive medication prior to surgery to lessen the chance of GI bleeding.
Transplant recipients may experience kidney problems as a consequence of the anti-rejection and other medications they take. The cornerstones of current immunosuppressive regimens – cyclosporin and tacrolimus – can cause damage by constricting the arteries leading to the kidneys.
Most patients will have a "bump" in their serum creatinines while taking these drugs, indicating a decrease in renal function. Fortunately, most patients are able to function quite well despite this change in kidney function.
Drugs may be prescribed to counteract the negative effects of the immunosuppressive medications. Some of these include calcium channel blockers (e.g., diltiazem, nifedipine) to dilate blood vessels, pentoxyphylline, which improves the ability of red blood cells to pass through small blood vessels, and L-arginine.
Other drugs used post transplant that may affect kidney function include Bactrim, non-steroidal anti-inflammatories such as ibuprofen and toradol, antibiotics, ACE inhibitors and rapamycin.
Only a small percentage of patients – about 2% – will experience serious kidney problems that eventually could require dialysis or even kidney transplantation.
Other causes of kidney problems not unique to transplant recipients include dehydration and overuse of diuretics.