Why do people with cystic fibrosis sometimes need organ transplants?
There can come a point when standard cystic fibrosis (CF) treatments aren’t working as well as they should be and people with CF can become very unwell, requiring more care and support. This is the point when CF teams may decide that a lung or other organ transplant is necessary. For some people with CF, other organs may need to be transplanted (including the liver or the pancreas) because of the damage the condition can inflict on the whole of the body.
This is not a decision that the person with cystic fibrosis or their clinical team will take lightly. Deciding on the right time for a transplant requires a balancing act of ensuring the person is poorly enough to justify going through this complicated procedure, but well enough that they will be physically able to recover from the operation.
You should remember that people with CF will only be considered for transplant if they are very unwell and if their clinical teams feel that other treatments aren’t enough to stop their health from declining.
What does a transplant involve?
A person with cystic fibrosis will be assessed for a transplant if their doctors feel that they are no longer responding to the usual array of treatments. This will involve them going through a long, gruelling assessment process, which can be very stressful. Eventually, it will be decided whether they are unwell enough to be listed for transplant but also well enough to recover from the operation – it’s a fine balance.
2. Being listed
If it is decided at an assessment that someone is eligible for transplant, they will then choose whether or not to be listed. This can be a huge decision, and there will be many factors that go into making it. For some people, the stress of going on the waiting list and the potential risks of going through transplant might outweigh the benefits of being able to spend time with family and friends. Remember, this decision is very personal and can only be made by the person having the transplant, but you can help them by being there to listen to their concerns and talk things through with them.
3. Waiting for an organ
If someone decides to be listed for a transplant, they will then have to wait for ‘the call’. On average people with CF wait 18 months for a transplant but many will wait longer, and can go through many false alarms before getting their new organ. False alarms happen if an organ is found but upon inspection is not usable – this might mean it is damaged, has an infection or shows signs of other disease. False alarms can be incredibly stressful, and it’s at times like this where your support could be valuable.
Bear in mind that not everyone on the transplant list will get the new organ they need, and sadly only two in three people on the transplant list will get their transplant.
If a viable organ is found, the person waiting for the organ will be called into hospital and will undergo an operation that can take between six and 12 hours. After the call, they will only have a matter of hours to get to the hospital and be prepared for the surgery, so everything may happen very suddenly. Many people will have a plan in place to inform friends and family when they get ‘the call’.
After receiving a transplant, it is common to need to spend a very long time recovering in hospital and then at home. Everyone recovers from transplant at different speeds, but for many people this period can be very challenging.
Does a lung transplant cure cystic fibrosis?
No. Cystic fibrosis is a genetic condition so even though the transplanted lungs will not have CF and will never develop it, the rest of the person’s body will continue to have cystic fibrosis. This means that following a successful lung transplant, some CF treatment will still be needed.
How long is the waiting list for transplant?
There is no set waiting time, nor is there a straightforward queuing system. Lungs and other donor organs need to be biologically matched to the person with cystic fibrosis. Some people may wait a matter of weeks for donor lungs to be found, others may wait years, and sadly, some people will die on the waiting list. The average waiting time is around 18 months.
People on the waiting list who are rapidly deteriorating can now be registered for an urgent or super urgent lung transplant. This new system means that patients who are at most risk will be given higher priority for a transplant, but still cannot provide any guarantees.
Find out more about what the Cystic Fibrosis Trust are doing to increase the number of donor organs.
How long does it take to recover from a transplant?
Transplants are major operations that take many hours and require a stay of several weeks in hospital to recover physically, though this stay can end up being much longer. It’s really important to remember that, for some people, the psychological recovery can take a lot longer. It can be very difficult for some people to adapt to and cope with everything that has happened to them after they have had a transplant.
What is the life expectancy after lung transplant?
Lung transplants do not give people with CF a ‘normal’ life expectancy, but they can extend someone’s life and improve their quality of life. The NHS estimates that around nine out of 10 people survive a lung transplant, with most of these people surviving for at least a year after having the operation. About half will survive for at least five years after having a lung transplant, with many people living for at least 10 years. There have also been cases of people living for 20 years or more after a lung transplant.
However, it’s really important to be aware that these statistics are averages, and based on the outcomes for everyone who’s had a lung transplant, not just people with cystic fibrosis. Because of this, it’s very difficult to apply these statistics to individuals. Life expectancy statistics can never take into account individual circumstances.
How can I support someone going through a transplant?
When you know someone who is very ill, or who has just been through a major operation, it can be difficult to know how best to help. Here are a few of the ways that people with CF who have been through the transplant journey told us their friends and colleagues could help to support them.
- Offer support, but don’t force it – It can be incredibly valuable for the person you know who is going through transplant to know that support is there if they need it, but remember that the transplant journey can be a very overwhelming time. Letting someone know that they can approach you if they need support can make a huge difference, but don’t be offended if they are too overwhelmed to accept your support straight away.
- Offer specific help – The person you know may be feeling overwhelmed by their situation and feel unable to ask for help sometimes, so making specific offers of help like doing their shopping, cleaning their home or giving them a lift somewhere can be really helpful.
- Remain aware of limitations – It is also possible that the person you know could be listed for transplant and not seem any more unwell than they have in the past, or that their health may have deteriorated without you realising. They may appreciate you making allowances and changing your plans to include them, whether that means having a night in or spending time together at a location local to them. If someone you know has had a transplant, they might need a lot of time to recover physically and psychologically before they are able to return to ‘normal’.
Find out more
Need more information on transplant? Explore our transplant packs for people going through the transplant process and their friends and families.