So you want or think you need a transplant - how do you start.
Your Pulmonologist is the best place to start. He knows you as a patient, and should know if your lung disease makes you a potential candidate for lung transplant.
He (or she) should also know if there are any other medical reasons you would not be considered for transplant listing.
Next is the money part - who is going to pay. You need to talk to you insurance company, Medicare, Medicaid or the VA. They will tell you where you can have a transplant. Take this list to your doctor and discuss where he has would like to refer you. (VA tells you which of their centers you can go to).
Your doctor will prepare a package as required by the Transplant Center and send it there for their staff to review. If they think you might be a good candidate, you will be invited for an evaluation.
This is a simplified description of the steps to start the listing process.
Side Benefit of Evaluation
Listing is a long and stressful process. It can take up to six months from the time your doctor utters the words until you are listed. It took me almost six months. There are some major upsides to the process. You will have more tests than you have ever had and they will learn more about your lung disease and every other working part of your body and mind. You will get more attention to your disease than you ever had. You will see doctors, nurses and a variety of techs. They will look for ways to keep you alive and functioning well until your transplant. They may even prolong the time until you need a transplant. In some cases transplant centers have helped patients find alternate treatment plans instead of a transplant.