Before Transplantation – Getting on the Lung Transplant List
Each hospital has slightly different procedures in place for preparing evaluating lung transplant patients. In general however, evaluation before transplantation is designed to insure the following:
- That transplantation is an acceptable option
- Optimal timing of the procedure
- No medical, psychological, financial or social issues exist which may compromise the transplant
Listed below is an example of procedure followed by University Hospitals of Cleveland in Cleveland, Ohio. This information is meant to serve an example of what may happen in your experience. As always, please talk with your doctor about what you can expect from their facility.
Typical Steps in the Process of Listing for Lung Transplantation
Outline of a typical sequence of evaluation and listing for lung transplantation may involve:
- Initial screening
- Extended testing and evaluation
- Approval at transplant center
- National listing on the lung transplant waiting list
It is important to remember that a patient is not actually listed for transplantation until the final step (National listing on the lung transplant waiting list) is completed. Remember, initial referral does not guarantee that a transplant or listing will occur.
Referral or initial contact with the transplant center is the first step in the transplant process. There is usually a lung transplant office which needs to be contacted. This contact usually comes from your doctor’s office. Your doctor will usually make initial contact to request evaluation for transplant and then forward initial records and information which will assist the transplant team in the initial evaluation process. Occasionally this referral may also be initiated by patients or by an insurance case worker at the patient’s request.
Once the contact is made, a secretary or coordinator will contact you to help set up a time for an initial evaluation. Sometimes initial critical tests may be scheduled before this visit. The purpose of this initial visit is to determine whether or not lung transplantation may be a viable option for you at this time. A second purpose of the visit is to identify potential medical, psychological, social or financial impediments to the transplantation process.
This initial encounter is usually with the transplant pulmonologist. The purpose of this visit is to obtain a detailed review of your medical history and detailed physical exam to better understand the underlying lung disease and any other potential medical issues which may affect the transplant process. Before a patient receives a lung transplant they undergo several tests to make sure they are not only eligible for a lung transplant, but that it would be a helpful and effective way of treating their disease.
Lung transplantation is a difficult and challenging undertaking. It is known that a number of factors may make the risk of transplantation prohibitive. Click here for more information about recipient selection criteria.
Typical events during such an initial visit may include:
- An appointment with the transplant pulmonologist
- A chest X-ray
- Baseline pulmonary testing often including exercise or walk testing
- Blood work
- Psychiatry or social work evaluation
- An appointment with the financial counselor
After the initial screening, some decision about further transplant consideration is usually made. If you and your transplant doctor feel that further consideration for transplantation is appropriate, a second and more extensive evaluation process is initiated.
Extended Testing and Evaluation
After the initial screening, if transplantation is felt to be an option, additional detailed visits may occur with the transplant pulmonologist, surgeon, or other relevant consultants depending on the patient. Some information, procedures or tests the pulmonologist may require are:
Blood Tests – You will have blood drawn for many tests ranging from routine blood counts and blood chemistries to checking for past exposure to hepatitis, HIV and other viruses and infections diseases. Blood typing and preliminary tissue antibody screening will be done.
CT Scan – This test examines your lungs in more detail than a routine chest X-ray; it assists your physicians in determining the severity of your disease. In some diagnoses (such as pulmonary fibrosis) it may help to determine whether a single or double lung transplant is necessary.
V/Q Scan – This test, often performed in a nuclear medicine department, examines your lungs to see if there are areas that cannot exchange oxygen well because of destroyed air sacs or pulmonary vessel disease.
Echocardiogram – This test records the motion of the heart walls and valves. It helps to determine the size and function of your heart.
Heart Catheterization – In some instances it may be necessary to have a cardiac catheterization to measure the pressures in your pulmonary arteries and/or to determine whether there is evidence of coronary artery disease. Your transplant pulmonologist will decide based upon your underlying disease, your age, and the presence of risk factors for heart disease which if either of these procedures is necessary.
Dental Consultation (to prevent infection) – It is important to determine if there is any potential source of infection in your teeth or gums. Any needed dental procedures are best completed before transplantation. You may need to provide a letter from your dentist stating your teeth are in good condition and there is no potential source of infection.
Other Testing – Depending on your age and gender you may require routine health maintenance and cancer screening tests. These may include colonoscopy, prostate specific antigen testing, PAP smear, and mammogram. Certain patients may require a CT scan of the sinuses, bone densitometry or other consultations.
Infection Prevention – If you have never had chicken pox or hepatitis B, those vaccines may be necessary prior to your transplant. You may be advised by your pulmonologist to receive your annual influenza shot and your pneumonia vaccine at the appropriate interval.
Psychosocial Evaluation – Emotional stability and a supportive network of family and friends are critical to a successful transplant. A transplant social worker may conduct a detailed assessment of your support systems and your ability to comply with the complex medical routine that must be followed after transplant. Your compliance with past medical treatment and physician recommendations is one indicator of future compliance. For example, ongoing smoking, alcohol or drug abuse may affect the decision whether to transplant.
Financial Evaluation – Depending on the hospital, a financial counselor will likely review your insurance benefits regarding transplant and post-transplant medical and pharmaceutical coverage. A severe lung illness that requires transplant can lead to very large medical expenses. It is important to communicate any changes in your insurance coverage to your financial counselor right away to avoid any complications. Some examples of important considerations are:
- Any loss of income associated with a leave or absence from work
- Additional help at home
- Transplant cost
- Pre and Post-transplant tests
- Pre and Post-transplant medication
Approval at Transplant Center and National Listing on the Lung Transplant Waiting List
Once your initial evaluation and testing is complete, all information is presented before a lung transplant committee that carefully reviews all information to determine eligibility and timing of transplantation. If it is decided that the patient is a viable candidate for lung transplantation, they are notified and placed on the national lung transplant waiting list through UNOS (United Network for Organ Sharing).
How long will you have to wait?
It is impossible to tell how long the patient will have to wait; several factors such as blood type, lung size, and severity of illness determine priority for transplantation. Currently lung allocation is through a system adopted in 2005 to help insure that organs are allocated to patients that are most likely to benefit from receiving them. This system is known as the lung allocation scoring (LAS) system.
What to do while on the transplantation list
Maintain healthy habits – You will need to maintain healthy habits while on the waiting list. These include:
- Compliance with any medications
- Eating a healthy diet
- Continue exercising to maintain physical conditioning and optimal body weight.
- Avoiding alcoholic beverages
Keep in touch – You will need to keep in close contact with your transplant coordinator, and if you are on the waiting list for a long time, your transplant surgeon. You should report any illnesses or exacerbations of lung disease to the transplant coordinators right away.
The transplant coordinator needs to be able to reach you as soon as a proper lung becomes available. Be sure that you are reachable 24/7 for the transplant call. You should always have a family member ready to help you travel when the time comes.
What Happens Next?
When an organ becomes available, your coordinator will contact you and you may need to go to the hospital with very little notice. Do the following:
- Contact your family member who is always ready to help you travel when the time comes.
- Do not eat or drink anything after you are called.
- Call your transplant coordinator. The mode of travel may vary depending on the distance from the transplant center, weather and time until transplant. Your transplant coordinator will help make these plans.
The transplant coordinators typically will show you and your family where you are to check in. Often potential transplant candidates will be taken directly to an intensive care unit to prepare for the surgery.
This information originally appeared in the University Hospitals Lung Transplantation Patient Handbook, and was adapted for use on NetWellness with permission, 2008.
More articles about Lung Transplantation:
- Lung Transplant Surgery and Recovery
- Medications for Lung Transplant Patients
- Complications of Lung Transplantation – Infection and Malignancies
- Complications of Lung Transplantation – Rejection
For more information:
Go to the Lung Transplantation health topic.