Idiopathic pulmonary fibrosis steals breath in slow motion. A lung transplant can hand it back-but it’s not a cure, and the road is long. If you’re weighing this, you want the straight story: who actually gets listed, how the waiting works, what surgery and the ICU feel like, the meds and side effects, the odds, and the real day-to-day after you go home. That’s what this guide covers, step by step, without sugar-coating.

TL;DR

• Transplant can extend life and improve function in IPF when disease is advanced or rapidly worsening, but it comes with lifelong immunosuppression and infection risk.
• Expect a long evaluation, an uncertain wait, a 6-10 hour surgery, 2-3 weeks in hospital, 3-6 months of rehab, and ongoing monitoring for rejection and infection.
• Survival: around 85-90% at 1 year and ~55-60% at 5 years for adult lung transplants as of 2025 (International Society for Heart and Lung Transplantation registry).
• Most patients take a calcineurin inhibitor (tacrolimus), mycophenolate, and prednisone; watch for kidney strain, diabetes, high blood pressure, and skin cancer.
• Practical wins: do pulmonary rehab early, vaccinate before listing, line up a caregiver, pack a go-bag, and learn your meds by heart.

What You’re Really Signing Up For

People click on this topic because they need clarity, not platitudes. The promise of a lung transplant for IPF is more time and better breathing. The trade-off is complexity: big surgery, immune system taming, and a lifetime of vigilance. Your goal is to judge if the benefits outweigh the costs for you-and prepare smart if they do.

Jobs you likely want to get done right now:

• Figure out if you or your loved one might be a candidate.
• Understand the waiting list and what you can control during the wait.
• Know exactly what happens on surgery day and in the ICU.
• See the recovery milestones, risks, and meds in plain language.
• Get checklists and a plan you can actually use tomorrow.

One grounding fact: transplant doesn’t fix IPF in your native lungs-it replaces them. That means your new lungs don’t have fibrosis, but they can inflame (rejection), get infected easier, and scar over time (called chronic lung allograft dysfunction, or CLAD). The art is keeping the new lungs healthy as long as possible while managing side effects from the drugs that protect them.

The Path: From Evaluation to Listing to the Call

Before anyone talks operating theatres, your team must decide if transplant is likely to help you more than hurt you. That’s the evaluation.

Typical signals you’re approaching transplant territory in IPF:

• Progressive breathlessness despite therapy (oxygen, antifibrotics).
• Forced vital capacity (FVC) falling (e.g., >10% drop over 6-12 months) or diffusion capacity (DLCO) <40% predicted.
• Oxygen needed at rest or a big desaturation on a 6-minute walk.
• Pulmonary hypertension on echo/cardiac cath.
• Acute exacerbations or hospitalisations for respiratory failure.

Evaluation usually spans 1-3 weeks of testing (sometimes over several visits): pulmonary function tests, CT scan, heart assessment (echo, sometimes right-heart cath), lab work, cancer screening, dental check, bone density, nutrition review, psychosocial assessment, and a fitness check. You’ll also meet surgeons, anesthetists, pharmacists, and a social worker. It’s thorough because transplant pulls every system into the story.

Who is a candidate? There’s no single rule, but teams lean on international guidance and local experience. As of 2025, adult IPF candidates are often:

• Under ~70-75 years, with biological age and frailty weighed more heavily than the number alone.
• Without severe, nonreversible conditions that would cap survival (untreated cancers, active substance use, severe frailty, severe kidney or liver failure not fixable).
• Committed to the regimen: medications, frequent monitoring, rehab, and infection precautions.
• Supported by at least one reliable caregiver for the first few months.

Single vs double lung transplant? For IPF, many centers prefer bilateral (double) because long-term function may be better and it avoids mismatch between one new and one fibrotic lung. That said, single-lung transplant remains common in older patients or when donor supply is tight-shorter surgery, potentially faster recovery, but sometimes higher risk of infection in the old lung and different long-term dynamics. Your surgeon will walk through the center’s data and your anatomy (size match matters).

How the waiting list actually works: you’re matched to donors by blood type, size (height and chest dimensions), geography, and an urgency/benefit score. The scoring system isn’t the same everywhere-some countries use a formal allocation score; others rely on center judgment plus urgency categories. What’s constant: the longer you wait, the more your team reassesses you to make sure the benefit is still there.

While you wait, you can move the needle:

• Do pulmonary rehab: strength and endurance now pay off after surgery.
• Complete vaccinations early (influenza, pneumococcal, COVID-19, hepatitis B if needed, and others your center recommends). Post-transplant, some vaccines (live ones) are off the table.
• Sort dental issues-a hidden infection can derail a transplant.
• Practice airway clearance and breathing drills with your physio.
• Pack a go-bag and plan transport; donor calls often come at night.

Expect false alarms. Donor lungs sometimes look good on paper but fail on inspection. It’s standard to be called in, prepped, and then sent home when the team decides the lungs aren’t safe. Frustrating, yes, but it’s a sign your center is careful.

Surgery Day and the First Weeks: A Plain-English Walkthrough

The call comes. You stop eating and drinking, grab your bag, and head in. Pre-op is blood work, a chest x-ray, lines placed, and a talk with anesthesia and surgery. Someone on the team will confirm consent and answer last questions. Your caregiver will get a place to wait and a contact number for updates.

In the operating room, you go under a general anesthetic. The surgeon uses either a clamshell incision (across the chest) or two side incisions. A heart-lung machine or ECMO may support you while your lungs are swapped. Each lung is attached to your airway and blood vessels. If it’s a single-lung transplant, only one side is replaced. The actual time depends on anatomy, scarring, and donor lung condition-count on 6-10 hours.

What you’ll wake up with in ICU:

• A breathing tube (usually out within 1-3 days if things go smoothly).
• Chest drains on both sides to remove air and fluid.
• IV lines and sometimes a urinary catheter.
• A pain plan-often an epidural plus IV meds early, then tablets.

First breaths through new lungs can feel strange: more air than you’re used to, and coughing will hurt for a bit. Physios will start early with gentle exercises and breathing techniques. Nurses will sit you up the same day or next, and walking the corridor usually starts within 48 hours.

Complications in week one you’ll hear about:

• Primary graft dysfunction (PGD): the new lungs can get inflamed and leaky in the first 72 hours. Most cases are mild and settle. Severe PGD may need more support or ECMO.
• Bleeding or arrhythmias (irregular heart rhythm) from surgery-usually manageable.
• Infections: everyone is on antibiotics and antifungals early; cultures guide tweaks.

Bronchoscopies (camera into the airways) check anastomoses (the joins) and clear mucus. Many centers do scheduled surveillance bronchoscopies during the first year to catch rejection or infection early.

Discharge timing varies. A typical pattern is 2-7 days in ICU, then 7-14 more days on the ward. If rehab is available nearby, you may go there next for a few weeks. Your team won’t send you home until you can cough and clear your airway, your oxygen needs are stable (often none at rest), your pain is controlled, and you can manage the basics of your meds and spirometry diary.

Life After: Meds, Milestones, Risks, and How to Tilt the Odds

Transplant meds aim to prevent rejection while sparing you from side effects. The classic trio is:

• Tacrolimus (or cyclosporine): the backbone; requires blood-level monitoring. Watch kidneys and blood pressure.
• Mycophenolate mofetil (or azathioprine): adds protection against rejection.
• Prednisone: higher doses early, tapering over months.

On top of that, you’ll usually take an antibiotic (like trimethoprim-sulfamethoxazole to prevent Pneumocystis), an antiviral if you or the donor is CMV-positive, and an antifungal early on. Many people also leave with meds for stomach protection, blood pressure, cholesterol, bone strength, and blood sugars.

Common side effects to expect and manage:

• Kidney strain (from tacrolimus): stay hydrated, avoid NSAIDs unless your team says okay, and keep up with labs.
• High blood pressure: often needs medication.
• High blood sugar/diabetes: steroids and tacrolimus can push sugars up-diet, walking, and sometimes insulin help.
• Tremor and sleep issues: often improve with dose adjustments.
• Infection risk: hygiene, masks in crowded places during surges, and quick reporting of fevers matter.
• Skin cancers: use sunscreen and hats daily; in sunny places this risk is real and higher on immunosuppression.

Rejection isn’t one thing. There’s acute cellular rejection (often silent; found on biopsy; treated with steroids) and antibody-mediated rejection (less common, can be trickier). Long-term, the concern is chronic lung allograft dysfunction (CLAD), an umbrella term that includes bronchiolitis obliterans syndrome (BOS). The goal is to delay CLAD as long as possible-good infection control, reflux management, and consistent meds help.

Milestones people care about:

• First week: breathing tube out, chest drains out, first corridor walks.
• First month: home or rehab, visiting clinic weekly, learning meds and spirometer tracking.
• Three months: driving again if your team approves, pulmonary rehab in full swing, clinic visits less frequent.
• Six to twelve months: most people find their new daily baseline, often without oxygen, with better stairs and hills than before.

What about survival and function? As of 2025, the International Society for Heart and Lung Transplantation (ISHLT) registry reports around 85-90% 1-year survival and roughly 55-60% 5-year survival for adult lung transplants across diagnoses. IPF patients can do at least as well as the overall cohort in many programs, especially with bilateral transplants and careful post-op care. In Australia and New Zealand, the cardiothoracic transplant registry has reported similar outcomes in recent years.

A few levers that consistently help:

• Adherence: take meds exactly as prescribed; don’t run out; bring your log to clinic.
• Infection vigilance: wash hands, avoid sick contacts early on, and report fever or new cough quickly.
• Reflux control: untreated reflux can harm the graft; sleep slightly elevated, follow diet advice; some centers treat reflux aggressively.
• Sun safety: daily SPF 50, wide-brim hat, and skin checks-especially crucial in high-UV regions.
• Movement: short, frequent walks beat one long slog; rehab teaches the right pacing.

Work, travel, and food: Many return to some work by 3-6 months if their job allows. Travel is possible once your team is happy with stability; bring meds in original packaging, and sort travel insurance early. Food safety matters-wash produce, reheat leftovers well, and avoid high-risk foods like raw shellfish early on.

Checklists, Straight Answers, and Your Next Moves

Prep checklist (do this before listing if you can):

• Vaccines up to date (flu, pneumococcal, COVID-19, others per your team).
• Dental clearance and any needed extractions completed.
• Home set-up: a stable chair, a shower seat if needed, and a clean space for meds.
• Caregiver plan: names, shifts, transport to clinic.
• Go-bag: ID, med list, comfortable clothes that open in front, phone charger, slippers, lip balm.
• Advance care plan: your wishes, named decision-maker, shared with your team.

Meds quick-start sheet (day 1 at home):

• Use a weekly pill box and alarms; keep a printed schedule on the fridge.
• Take tacrolimus at the same times daily; do labs before your morning dose if a trough level is ordered.
• Don’t start new meds or supplements without checking-interactions are common.
• If you vomit within an hour of taking a dose, ring your team for advice on redosing.

Red flags that deserve a same-day call:

• Fever 38°C (100.4°F) or higher, or chills and sweats.
• New or worsening shortness of breath, oxygen drop, or chest pain.
• Productive cough with green/brown sputum or streaks of blood.
• Sudden weight gain with swelling, or very low urine output.
• Severe tremor, confusion, or persistent vomiting.

Mini‑FAQ

• Is transplant a cure for IPF? No. It replaces sick lungs with healthy donor lungs and can add years with better breathing, but it requires lifelong meds and monitoring.
• Will I still need oxygen? Many people come off oxygen at rest. Some need a little for exertion early on. Your team will test you before clearing you to go without.
• How often are clinic visits? Weekly to fortnightly early on, then monthly, then every few months once stable. It speeds up again if there are issues.
• Can I get a single lung? Yes-common in older IPF patients or when donor supply is limited. Your team weighs risks and benefits for you.
• What about antifibrotic drugs before transplant? Nintedanib/pirfenidone are often continued until transplant to slow decline; your team will guide timing.
• Sex, intimacy, and daily life? Most people resume intimacy once the incision heals and breathing is stable-usually after a few weeks. Ask about positioning to protect the sternum if you had a clamshell incision.
• Driving and work? Driving is often okay around 6-8 weeks once pain is controlled and reflexes are sharp. Work varies by job; desk work may resume by 3 months.
• Alcohol and smoking? No smoking, ever. Alcohol in moderation may be allowed, but check interactions and liver function.

Decision helper: is it time to talk transplant seriously?

• Have you had a measurable drop in FVC or DLCO over 6-12 months?
• Do you need oxygen at rest or after a short walk?
• Have you had a hospital stay for an acute IPF flare?
• Is pulmonary hypertension showing up on your tests?

If two or more of those are true, it’s reasonable to ask for a transplant referral now rather than later. Earlier referral doesn’t mean earlier surgery-it means a calmer evaluation and more time to prepare.

Pro tips from clinic floors:

• Master your spirometry diary and symptoms; you’ll spot problems early.
• Bundle labs, physio, and clinic on the same day to reduce trips.
• Keep a shared digital note (you and your caregiver) with meds, doses, and questions for the next appointment.
• If sun is fierce where you live, make sun-safety a habit before transplant so it sticks when it matters more.

Credible sources behind the numbers: the International Society for Heart and Lung Transplantation (ISHLT) annual registry (latest 2024-2025 data), Australia and New Zealand Cardiothoracic Organ Transplant Registry reports, the Pulmonary Fibrosis Foundation’s medical statements, and consensus statements from transplant societies. Different centers quote their own outcomes too-ask for those and how they compare with the international registry.

Next steps, tailored to common scenarios:

• Newly diagnosed IPF, mild symptoms: Get to a specialist clinic, start antifibrotics if suitable, and ask for an early transplant information visit. Start pulmonary rehab now.
• Moderate IPF, oxygen with exertion: Request a formal transplant evaluation. Update vaccinations and dental checks. Begin caregiver planning.
• Rapidly declining or recent hospitalisation: Push for an urgent review and listing assessment. Discuss bridging options like high-flow oxygen or ECMO if relevant.
• Already listed: Keep your phone on, bags packed, and health stable; report infections quickly. Keep up rehab and nutrition.
• Post-transplant, month 1-3: Prioritise meds adherence, infection precautions, and rehab. Ask about reflux screening and skin checks.

If you remember one thing, let it be this: the best outcomes come from early preparation, relentless consistency with meds and follow-up, and a team approach-you, your caregiver, and the transplant center moving in lockstep.