Once you’re officially listed for a transplant, the next step is waiting – and staying ready. Here’s what you can do:

Take care of your body

Use this waiting time to stay as healthy as possible. That means:

  • Eating well: Stick to your pulmonary hypertension-friendly, low-sodium diet. If your transplant center gives you a weight goal, follow their plan.
  • Staying active: Even light exercise can help. Ask your team what types of movement are safe for you.

Let your transplant team know if:

  • You have a major change in health
  • You get sick or start a new medication
  • You are admitted to a hospital

The stronger you are before surgery, the smoother your recovery may be.

The emotional impact of listing

Getting listed for a lung transplant is a big step – and it can bring a lot of emotions. You may feel scared, anxious, hopeful or even guilty.

These feelings are all normal.

Why this time can be hard

  • You may have just gone through many tests.
  • You might worry about the surgery or what happens next.
  • You may feel pressure to move or make big life changes.
  • The wait for an organ can be long and uncertain.

Some people also feel guilt – knowing that a donor has to die for them to live. Others feel stressed by false alarms or changes in their health.

Coping with emotions

It’s okay to have good and bad days. What matters is having healthy ways to cope. Here are some ideas that have helped others:

  • Talk to friends, family or a therapist
  • Join a transplant support group
  • Practice relaxation techniques like deep breathing, meditation or yoga
  • Keep a journal or start a new hobby
  • Set small goals and celebrate progress
  • Keep moving – even light exercise can help your mood
  • You are not alone – many people have felt what you’re feeling

You can also ask your transplant center about local support groups or talk to a spiritual advisor if you have religious concerns.

Even though most transplants go well, it’s important to prepare for the unexpected.

  • Advance directive: A written plan for your medical care if you can’t speak for yourself.
  • Durable power of attorney: A trusted person you name to make health decisions if you can’t.

Talk with your loved ones about your wishes, then put those wishes in writing.

Financing a lung transplant

Lung transplants can be expensive. There are both medical costs (like surgery and medicines) and non-medical costs (like travel and time off work). Luckily, there are many ways to get help.

What does a transplant cost?

Costs can include:

  • Medical care: evaluations, tests, surgery, follow-up appointments and rehab
  • Medicines: especially immunosuppressants
  • Travel, lodging and food: if you have to move closer to a transplant center
  • Childcare or lost wages for you or a family member

Every hospital sets its own prices. Your transplant center will give you an estimate.

Who pays for what?

Your transplant team will include a financial coordinator to help you understand your options. These may include:

  • Covers many costs, but you may still owe deductibles or co-pays.
  • Read your policy carefully and call your insurance company with questions.
  • Keep track of every call or letter you send or receive.
  • Medicare covers transplant surgery at Medicare-approved centers.
  • You may also qualify for a supplemental plan to help with uncovered costs.
  • Medicaid rules vary by state. Ask your social worker for help applying.
  • Some drug companies offer free or discounted medications.
  • View PHA’s treatment access information.
Financial Assistance Resources
  • If you’re a veteran, you may qualify for help through the VA or TRICARE.

Some organizations offer information and/or financial support for transplant patients. Here are a few:

  • Crowdfunding or events can raise money – but check legal rules first.
  • Be careful: Some types of donations may count as income and affect your eligibility for Medicaid or other benefits.

Who pays for what?

Your transplant team will include a financial coordinator to help you understand your options. These may include:

  • Covers many costs, but you may still owe deductibles or co-pays.
  • Read your policy carefully and call your insurance company with questions.
  • Keep track of every call or letter you send or receive.

  • Medicare covers transplant surgery at Medicare-approved centers.
  • You may also qualify for a supplemental plan to help with uncovered costs.
  • Medicaid rules vary by state. Ask your social worker for help applying.

  • Some drug companies offer free or discounted medications.
  • View PHA’s treatment access information.

  • If you’re a veteran, you may qualify for help through the VA or TRICARE.

Some organizations offer information and/or financial support for transplant patients. Here are a few:

  • Crowdfunding or events can raise money – but check legal rules first.
  • Be careful: Some types of donations may count as income and affect your eligibility for Medicaid or other benefits.

Getting “the call”

When a donor organ becomes available, things can move fast. You may get a phone call at any time – day or night – asking you to come to the hospital right away.

How it works

  • A local Organ Procurement Organization helps hospitals match donor organs with people on the waiting list.
  • If you’re the best match in the area based on your Lung Allocation Score and other factors, your transplant center will contact you.
  • You’ll be told to come to the hospital, usually within a few hours.

Important: Do not eat or drink anything after you get the call unless your transplant team tells you otherwise.

What happens at the hospital

Once you arrive:

  • You’ll go through a quick checkup called a pre-operative workup. This may include blood and urine tests, a chest X-ray and an EKG.
  • If the donor lungs are still healthy, surgery will begin shortly.
  • Sometimes, the lungs turn out not to be useable. This is called a false alarm. It can be disappointing, but it does not affect your CAS or your future chances of getting a transplant.

How you can prepare

You may want to prepare in advance by:

  • Packing a hospital bag.
  • Making travel plans with family or friends.
  • Keeping your phone nearby at all times.

Being ready to respond quickly can help things go more smoothly when the time comes.