At 2:10 a.m. on a Tuesday, Lakshmi’s phone lit up on the bedside table. It was the transplant coordinator: “We may have lungs for you. Please don’t eat or drink anything, and come to the hospital now.” Her bag had been packed for five months. Her son had the car keys hanging by the door. Ninety minutes later, she was in the transplant ward having her blood drawn.

Lakshmi, a 46-year-old schoolteacher with lung fibrosis, is a composite of many patients we have cared for. Her story shows something families rarely hear: life on the lung transplant waiting list is not passive waiting. It is active preparation. The strength you build, the infections you avoid and the plans you make in these months directly shape how well you come through surgery.

This guide explains how the waiting list works in Karnataka, why the call can be unpredictable, the five things that matter most while you wait, and exactly what happens when your phone finally rings.

How the Lung Transplant Waiting List Works in Karnataka

In India, organ allocation is run at the state level. In Karnataka, the government-appointed body is the State Organ and Tissue Transplant Organisation (SOTTO), still widely known by its earlier name, Jeevasarthakathe. It maintains the waiting list and coordinates every deceased organ donation in the state. State agencies are linked to regional (ROTTO) and national (NOTTO) networks.

Here is how you get onto the list:

1. Evaluation: Your transplant team completes a full medical evaluation and decides you are a suitable candidate.
2. Registration: The hospital’s transplant coordinator registers you with SOTTO, submitting your medical details, blood group and other information.
3. Verification: SOTTO verifies the application and you become active on the waiting list.
4. Allocation: When donor lungs become available, they are offered according to defined rules, which consider medical urgency, blood group compatibility, body and chest size, and other clinical factors. Patients in an emergency can be prioritised.

The need is far greater than the supply. Government data reported in late 2025 showed fewer than a thousand people registered on India’s national lung waiting list, while researchers estimate the true number of people who could benefit is much higher. That gap is why every donation matters, and why our article on brain death and organ donation myths is worth sharing with your family and friends.

Why Lungs Are the Hardest Organ to Match

Many families ask why a donor might give a kidney and a liver, but not lungs. The answer is that lungs are uniquely fragile.

This is why the timing of your call is unpredictable, and why staying ready every single day matters so much.

Your 5 Jobs While You Wait

Job 1: Get stronger, not weaker

It sounds backwards. You are breathless, so why exercise? Because muscle is your reserve for surgery. Research in lung transplant candidates shows that a longer six-minute walk distance is associated with lower risk of dying on the waiting list and in the first year after transplant. Several studies found that structured pulmonary rehabilitation programmes improved walking distance by around 70 to 100 metres and also improved mood and breathlessness.

A typical “prehab” routine your team might design includes:

• Walking or cycling with your prescribed oxygen, most days of the week.
• Leg and arm strengthening with light weights or resistance bands, two to three times a week.
• Breathing techniques such as pursed-lip breathing to manage breathlessness.
• Daily movement goals, like getting up from a chair ten times without using your hands.

Always exercise with the oxygen settings your team prescribes. Never push through chest pain, dizziness or oxygen levels below your doctor’s safe target.

Job 2: Eat to stay transplant-ready

Being significantly underweight or overweight both increase surgical risk. Advanced lung disease burns extra energy just to breathe, so many patients quietly lose muscle. Ask for a dietitian review and a personal weight target. Focus on adequate protein at every meal, such as dal, eggs, paneer, curd, fish or chicken, and small, frequent meals if large meals make you breathless.

Job 3: Stay reachable, every hour of every day

• Keep your phone charged, on loud, and switched on at night.
• Give the coordinator at least two backup numbers of family members.
• Inform the team before you travel out of town, change your address or change your phone number.
• Plan your route to the hospital and keep transport arranged at all hours.

Job 4: Avoid infections and keep your team informed

An infection can temporarily make you unsuitable for surgery. Wash hands often, avoid crowded places during flu season, and keep up with vaccines your doctor recommends. Get a dental check-up, because hidden tooth infections must be treated before transplant.

Job 5: Look after your mind

Waiting is emotionally exhausting. Anxiety, low mood and “what if the call never comes?” thoughts are common and understandable. Speak to the transplant counsellor, connect with other patients if your centre offers support groups, and keep small daily routines that give you a sense of purpose. Feeling low is not a weakness. It is part of the journey and it deserves support.

The Transplant Hospital Bag: Pack It Today

What Happens When the Call Comes

Knowing the sequence in advance makes those first hours far less frightening.

1. The call: The coordinator tells you to come in and to stop eating and drinking.
2. Travel: Come straight to the hospital with your bag and oxygen. Do not stop for errands.
3. Admission: Blood tests, a chest X-ray, an ECG and a final check that you are free of new infection.
4. Donor assessment: Meanwhile, the retrieval team examines the donor lungs in person, often with a bronchoscopy, before deciding whether they are suitable.
5. The go-ahead: Only when the team is satisfied are you taken to the operating theatre. A lung transplant typically takes several hours.
6. ICU: You wake up in intensive care, usually still on a breathing tube at first, with your family updated by the team.

When the Call Doesn’t End in Surgery

Sometimes, after all of that, the team says the donor lungs are not good enough, and you go home. Transplant teams sometimes call this a “dry run”. It is deeply disappointing, but it means the team protected you from receiving lungs that might fail. Many patients receive their transplant after one or more dry runs. Treat each one as a rehearsal that makes the real day smoother.

A Word for Caregivers

The caregiver is a core member of the transplant team. You will likely help with travel, medicines, exercise, meals and encouragement, both now and during recovery. Plan who can share the load, arrange time off work in advance if possible, and look after your own sleep and health. A rested caregiver is a better caregiver.

Frequently Asked Questions

This article is for general education and does not replace advice from your transplant team. Patient stories are composites, shared to protect privacy. Allocation rules are set by the state authority and may change.