Cystic fibrosis is a chronic, progressive disease. At some point, you and your CF team may feel it is the right time to start thinking about lung transplantation. So here are some basic facts about lung transplants.
Lung transplantation is a surgical procedure that replaces severely damaged lungs with new lungs when medical management can not maintain your health or lung function.
Most organs in the body are affected in patients wih Cystic Fibrosis (CF). For many people wih CF, chronic lung infections damage and destroy the lung tissue which in turn causes lung function to drop. At some point, your lungs may not be able to supply your body with enough oxygen and you may find that you require the use of oxygen or that your quality of life is impaired. When it is appropriate your CF doctor may provide you with some information so that you can think about this option in advance and your CF doctor may refer you for a lung transplant assessment.
Once you are referred, the lung transplantation doctors at Toronto General Hospital will review your files and meet wih you and your family/support person(s) to talk about lung transplantation: the assessment process, requirements pre- and post-transplant, the listing process, and possible complications. You will be offered some time to think about the assessment process but often patients may decide to proceed with the assessment right away.
The assessment process is an in-depth review of your suitability for a lung transplant. As part of this process, multiple tests are carried out to evaluate your lungs and other organs such as your heart, kidneys, gut and liver. Usually, these tests take about one week to complete. Most people do these tests as outpatients. During this time, you and your support person(s) will also meet with many members of the lung transplant team such as the transplant co-ordinator, nutritionist, social worker, and anaesthisiologist to determine if you are physically and psychologically ready to manage with the stresses of a transplant.
All patients that have completed the assessment are reviewed at a multi-disciplinary meeting where all members of the team participate. All your tests and interviews with the team are reviewed and carefully discussed. A decision is made about whether you are a candidate for a transplant. You and your CF team will be informed of this decision.
If and when you and the transplant team decide to proceed with the transplant, you will be booked to see one of the thoracic surgeons to sign an operative consent for the lung transplanation. You will also meet with the lung transplant co-ordinator who will tell you about what to expect when you are called for transplant and will arrange for you to get a pager.
Waiting is often the most stressful time for people because there is no way to predict when a suitable donor will become available. During this time it is absolutely essential that you try to stay as healthy and strong as possible. You will be required to participate in a regular exercise program, to eat a healthy diet, to maintain your nutrition, and to continue with all your daily medications and chest physiotherapy. You will also be seen in the pre-transplant clinic about once a month. Some tests will be repeated every 3, 6, and 12 months as needed. When lungs come available, the transplant team decides who should receive the lungs and this is based on how sick you are, your blood type and body size.
The average stay in hospital after your transplant is about 2 weeks but this can vary. Once you are mobile and able to take care of taking your medications your team will discharge you. You will remain on at least 3 medications for your whole life following the lung transplant in addition to some of your other CF medications required for other organs (e.g. pancreatic enzymes). The lung transplant team will follow you very closely for the first 3 months and you will have a lot of bloodwork and breathing tests done. After the first 3 months, if all goes well, we see you every 3 months for the first year then possibly every 6 months for the second year and then yearly after that.