What Patients and Families Need to Know
A lung transplant is a life-saving procedure for individuals living with late-stage lung disease—such as pulmonary fibrosis (PF), chronic obstructive pulmonary disease (COPD), cystic fibrosis, pulmonary arterial hypertension, and sarcoidosis—when other treatments have been exhausted. While preparing for a transplant can feel overwhelming, understanding the evaluation process, candidacy requirements, and waitlist expectations can empower you and your loved ones to navigate this journey with confidence.
1. Receiving a Referral and Choosing a Transplant Center
The transplant journey begins with a referral from your primary care physician or pulmonologist to a specialized medical center.
- Early Referral is Essential: Early evaluation allows patients to prepare physically and mentally while they still have the physical reserve required for rigorous testing.
- Selecting the Right Center: Verify which transplant centers are covered under your health insurance plan. You can research center volume and survival outcomes through the Scientific Registry of Transplant Recipients (SRTR) database at srtr.org. Because your transplant center will be a lifelong partner, consider location, travel support, and lodging options for recovery.
2. Steps to Prepare for Evaluation
Before undergoing a formal medical evaluation, taking proactive steps can improve your candidacy and overall well-being:
- Demonstrate Medical Compliance: Keep all physicals, vaccinations, and dental care up to date. Manage any co-existing health conditions by taking medications as prescribed.
- Maintain Endurance: Transplant centers require a baseline level of physical endurance. Ask your care team about enrolling in a pulmonary rehabilitation program.
- Meet Weight Guidelines: Outcomes are optimal when patients are near an ideal body mass index (BMI). Most centers require a BMI below 30–35.
- Remain Substance- and Tobacco-Free: Candidates must be completely free of nicotine (including patches, gum, and vaping), alcohol, narcotics, and illicit drugs—typically for at least six months before evaluation.
- Establish a Caregiver Network: Most centers require two to three dedicated adult caregivers who can provide continual physical and emotional support pre- and post-transplant.
3. What to Expect During Medical Evaluation
During evaluation, a multidisciplinary team—including transplant pulmonologists, surgeons, social workers, nurse coordinators, and financial specialists—will assess your health. Testing ensures that your lungs are sick enough to warrant surgery and that your other major organs (heart, liver, kidneys) are strong enough to tolerate procedure and post-transplant therapies.
Common Evaluation Tests Include:
- Pulmonary function tests, chest X-rays, and CT scans.
- Cardiac evaluations (echocardiogram, stress test, cardiac catheterization).
- Blood work for organ function, blood typing, and antibody screening.
- Screenings for age-appropriate cancers, infectious diseases, and gastroesophageal reflux disease (GERD).
4. The Waiting List and Organ Allocation
If accepted as a candidate, you will be registered on the national waiting list managed by the Organ Procurement and Transplantation Network (OPTN) and the United Network for Organ Sharing (UNOS).
- Lung Allocation Score (LAS): Priority on the waitlist is determined by an objective calculation that estimates medical urgency and post-transplant survival likelihood. Factors include age, oxygen requirements, pulmonary function test results, and six-minute walk distance.
- Organ Matching: When donor lungs become available, computer matching ranks candidates based on blood type, medical urgency, height, distance, and tissue compatibility. Factors like gender, race, religion, or financial status are never considered.
- Preparing for “The Call”: surgerical cancellations (“dry runs”) happen in roughly one-fifth of planned transplants due to donor organ issues or sudden recipient infections. Keep a bag packed, maintain enough oxygen for travel, and ensure your care team can reach you at a moment’s notice.
5. Surgery and Recovery
- The Procedure: Single-lung transplants typically take 4 to 6 hours, while double-lung transplants require 8 to 12 hours.
- ICU and Inpatient Stay: After surgery, recovery begins in the Intensive Care Unit (ICU) on a ventilator, with most patients transitioning to unassisted breathing within 24 to 48 hours. Total hospitalization typically lasts 1 to 2 weeks.
- Preventing Rejection: Your care team will immediately initiate immunosuppressant medications (such as tacrolimus, prednisone, and mycophenolate mofetil) to prevent your body’s immune system from rejecting the new organ.
6. Long-Term Outcomes and Financial Planning
- Quality of Life: Approximately 89% of lung transplant recipients survive at least one year post-surgery, and 74% survive at least three years, with many resuming active lifestyles, work, and travel.
- Managing Expenses: Transplant financial coordinators assist in navigating costs, including medical procedures, lifelong anti-rejection drugs, travel, and lodging.
- A Note on Fundraising: While personal fundraising or crowdfunding can help cover non-medical costs, consult your financial coordinator before starting, as funds raised may accidentally impact Medicaid eligibility.
How the Lung Transplant Foundation Can Support You
You do not have to navigate the pre-transplant process alone. The Lung Transplant Foundation provides dedicated support and peer connections for candidates, recipients, and caregivers:
- Peer Mentorship Program: Connect one-on-one with a trained peer mentor who has personally navigated the transplant process. Request a mentor at lungtransplantfoundation.org/mentorship.
- Educational Webinars: Participate in our monthly Transplant Talks to hear directly from medical experts and transplant recipients on topics ranging from waitlist management to post-transplant wellness
This resource was developed in partnership with educational materials provided by the Pulmonary Fibrosis Foundation. To read the complete guide, click below:
Download the Full Guide (PDF)