Techniques have changed over the years as surgeons have become more technically skilled. The most common operation carried out today is called a double lung transplant, or Bilateral Sequential Lung Transplant.
Recently survival rates have improved to 85% at 1 year. There are still many patients who are alive and well over ten years after their operation. Transplantation can help some people live longer and bring them a better quality of life.
When is the right time to discuss lung transplantation?
Transplantation should be considered for everyone with CF well before it is actually needed. There are many factors which are looked at to determine if someone should be referred for lung transplantation. The main criteria include:
- FEV1 between 30-40% predicted
- A rapid decline in lung function
- An increase in the number of exacerbations requiring antibiotic therapy
- Reduced quality of life
Eligibility for transplantation
There are factors that may affect whether or not you are eligible for transplantation. These include:
- Being a healthy weight
- Adherence to treatment and attendance at clinic appointments
- Smoking, recreational drug use and high alcohol consumption
- Certain bacterias in sputum
- Diabetes control
- Psychological health
Transplant Centres
There are five lung transplant centres in the UK. They are;
- Queen Elizabeth Hospital, Birmingham
- Harefield Hospital, London
- Freeman Hospital, Newcastle upon Tyne
- Wythenshawe Hospital, Manchester
- Papworth Hospital, Cambridge
When deciding on a transplant centre, things to consider include travelling time and expense as well as cost of accommodation for relatives immediately post transplant.
What does the transplant centre do?
Your surgeon and transplant team will want to get to know you. They will discuss options to help you decide whether to be considered for a transplant. If the team agrees that transplantation may help you and you agree, you will be placed on the waiting list. A number of medical tests will be performed at this stage.
You will be offered transplant when a suitable donor becomes available. Remember you can say no at any stage in this process. There are not enough donor lungs for everyone who needs a transplant and many people never have the opportunity. This is why we aim to place you on the waiting list approximately two years before you need a transplant but this does vary considerably.
What does the operation involve?
In double lung transplantation the surgeon will remove your two damaged lungs and put two new lungs into your chest. They will stitch them to your windpipe and attach them to your heart. To prevent rejection of the new organs you will have to take medication which partially suppresses your immune system. You must always take these exactly as prescribed.
What are the benefits?
The new lungs do not develop cystic fibrosis. Hundreds of people with CF have had successful transplants. Transplantation is not for everyone but it can completely transform a life. Many people from the Heartlands centre have benefited and their quality of life has been improved by transplantation.
What are the risks and complications?
Transplantation is a major operation and some people develop complications. These can be as a result of any operation.
Very occasionally people may die from this type of surgery, despite a high standard of care. It is important that you understand that there are risks involved with these types of operations.
Sometime the anti rejection drugs are not fully effective and the new organs can be rejected either straight away or more slowly over a period of years. With modern medicines this has become less common.
Any procedure will only be carried out with your consent and you will be asked to sign a consent form.
Does CF "go away" after you have a lung transplant?
Transplanted lungs do not have CF because they come from people who do not have CF. However, after the transplant, the person still has CF in the sinuses, pancreas, intestines, sweat glands and reproductive tract.
The new lungs do not "get" CF, but immunosuppressive drugs may decrease the ability to fight germs like Pseudomonas aeruginosa. These germs may stay in the upper airways after a transplant and can infect the new lungs. The risks of infection are highest right after the transplant operation. This is because immunosuppressive drugs are given at the highest doses right after the transplant so the body will not reject the new lungs. These drugs make it hard for the body to fight infections, and this can lead to lung infections.
Will I still receive care from the CF team at Heartlands?
As you will still have CF you will continue to be reviewed by members of the team at Heartlands.
Eg diabetes advice, port flushes, nutritional advice, exercise, psychology and social work support.
You will also continue to need an annual review at Heartlands CF Centre.
We are more than happy for you to contact us regarding any concerns or issues you or your family may have regarding any aspect of your CF care.