Toll Free Help Line: (888) 855-9463
Second Wind Lung Transplant Association

FAQ’s

What is Lung Transplantation?

Lung transplantation is the surgical replacement of either one (single) or two (double) badly diseased lungs with healthy lungs from a human organ donor. The decision to perform lung transplantation is made when the doctors feel that there is no other treatment that can help your lung disease.

Who needs a lung transplant?

The lungs provide your entire body with oxygen and remove carbon dioxide.  When lungs can no longer exchange oxygen and carbon dioxide, a patient is considered in end-stage lung failure and lung transplantation is considered.  Several different diseases can lead to end-stage lung failure.

How do I know if I need a transplant?

Some patients with severe lung disease may benefit from transplantation. Your cardiologist or pulmonary medicine specialist may refer you to a transplant center for an evaluation. The purpose of the evaluation is twofold: first, to determine the severity of your disease and whether there are any more conventional treatments; and second, to determine whether you would be able to survive the transplant operation and have a good long-term result afterwards.

What is the success rate of lung transplants?

According to the United Network for Organ Sharing (UNOS) the patient survival rates for all patients that had a lung transplant are 85% at one month, 69% at one year, and 51% at three years for patients transplanted.

What happens during the initial evaluation?

Once you have been referred for a transplant evaluation, a clinic visit will be scheduled.   You will be interviewed, examined, and counseled about your options for care.  This may or may not include a full evaluation for lung transplantation. The realities of having and living with a lung transplant are explained and discussed.  If it is decided to proceed with more evaluation, additional testing willbe scheduled.  Testing may include but not limited to:

  • Q scan
  • Chest X-ray
  • Chest CT scan
  • Six-minute walk
  • EKG
  • Pulmonary Function Studies
  • Psychological evaluation
  • Bone Density Scan
  • Abdominal Ultrasound
  • Echocardiogram
  • Cardiac Catheterization
  • Blood work
  • Urinalysis
  • Financial evaluation

Who makes up the lung transplant team?

There are many members of the lung transplant team.  Each is important because they bring special knowledge and expertise to help you during all phases of the transplant process.

Transplant Surgeon

This doctor will actually perform the lung transplant operation.  Along with your pulmonologist, the surgeon will closely monitor your care before and following surgery

Transplant Pulmonologist

This doctor monitors your care before and after surgery.  The pulmonologist is skilled in treating lung disease and determining whether a transplant would be beneficial.  After surgery, the pulmonologist will visit you in the hospital and monitor your care.

Transplant Nurse Coordinator

This is a nurse who is responsible for “coordinating” your care through the transplant evaluation process up until transplantation.  The transplant coordinator acts as a liaison between you and your doctors.

Transplant Nurse Practitioner

The transplant nurse practitioner oversees the details of your care after transplantation including medications, laboratory and other test results, and collaborates with your physician to provide ongoing management of your care.

Transplant Social Worker

The transplant social worker will help you with the “social aspects” of your care.  The social worker can provide information on insurance, and the financial part of the transplant. The social worker can also help arrange transportation, lodging and support services for you and your family.

Physical Therapist

The physical therapist will help you plan a physical activity program to follow during your hospital stay and at home.

Other Members of the Transplant Team

During your hospital stay you will meet many new people including nurses, resident doctors, the dietician, the psychiatrist, the respiratory therapist, and other personnel as needed.

When will I be placed on an organ waiting list?

After extensive diagnostic testing and consultation with several different members of the transplant team agree that the benefits of lung transplantation outweigh the risks, will proceed with listing you for a donor lung.  Due to the critical shortage of organs, a patient can wait up to two years for a donor organ to become available.

What do I do while waiting for a transplant?

While you are on the list, you need to continue to see your pulmonologist on a regular basis.  Your status on the list is determined by a score called the “lung allocation score” that is calculated based on specific data that is obtained by the transplant coordinator.  Please schedule and keep your appointments with the pulmonologist so we may ensure that you are in the best possible condition prior to transplant. Your physician will determine the frequency of your visits.  COMPLIANCE with maintaining and optimizing your health is PARAMOUNT in successfully undergoing transplantation.

What happens when an organ becomes available?

When a donor lung becomes available, a transplant coordinator will phone you at home first.  We must have a telephone number that will always reach you or someone else who can immediately contact you.  We will tell you that we have a potential donor, and then ensure that you have not been ill, or have any reason why we should not perform the transplant operation.  The first call you get does not always mean the transplant will happen.  The surgeon must first examine the donor lung, and may find that the organ is not strong and healthy.  It is always a possibility that we will prepare you for transplant surgery, and that the surgery may not occur.

How long will I be hospitalized after the transplant?

This depends on your specific situation. Although patients can recover sufficiently after lung transplantation to be discharged within 10 days, it is more typical for patients to be hospitalized for two weeks or more.

Will I have pain after the surgery?

Generally, most patients do not report a lot of pain. You will have an incision that does cause pain and discomfort when coughing. We will give you pain medication and specific instructions to lessen the pain.

How long does it take to fully recover?

It generally takes three to six months to fully recover from the transplant surgery. Age and previous medical history problems may cause the recovery period to take longer.

Will I need to take medications for the rest of my life?

In order to prevent your body from rejecting your new lungs, you will need to take immunosuppressive medications daily for the rest of your life. These medications play a crucial role in keeping your new lungs working properly.

Will my insurance cover the costs associated with the transplant?

This is difficult to say as benefits and coverage limits can vary a great deal. However, most insurance plans cover some portion of the costs. It is important that you contact your insurance company to get specific information on coverage and limitations. Our financial specialist and social worker can provide some assistance in getting you the information you need.

When can I return to work?

The goal of transplant is to allow you to return to former activities, including work. It usually takes about 6 weeks to recover from surgery. Work clearance is given on an individual basis.