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Transplant information and resources

Here, you can find out more about cystic fibrosis (CF) and double lung transplant, liver transplant and the transplantation of other organs. You can also find the Cystic Fibrosis Trust’s transplant information resources for adults and children with CF, and their friends and family, to help them understand what it might mean for their loved one.


On this page, you can find out more about:

While there is excitement and anticipation about new and emerging treatments in the pipeline, and a huge amount of international research is being funded to improve and extend the lives of people with cystic fibrosis, there are many people with the condition for whom existing treatments are no longer having an impact. This is when a double lung transplant might be considered. Transplantation of other organs, including liver, can also be necessary due to the damage the condition inflicts across multiple organs.

Find out more about cystic fibrosis and transplant, or scroll down to explore our transplant booklets.

Transplant booklets

We have worked with people with cystic fibrosis (CF), their families and CF and transplant clinicians to create three booklets on transplant:

Order the booklets

Use our digital form to order the transplant booklets direct to your door!

Order today

You can also order printed copies of the booklets by contacting our helpline. Email helpline@cysticfibrosis.org.uk or call 0300 373 1000.

 

What is covered in the transplant booklets?

As well as information from CF and transplant professionals, you’ll also find stories from real people who have been through the transplant process and have helped us to create these resources. The booklets contain information and advice about being listed for a transplant, the transplant process, and life after transplant.

Being listed for a transplant

The booklets cover a number of areas that you may want to consider if you or your loved one with CF has been listed for a transplant. These include:

  • Talking about transplant with friends, family and children
  • The transplant assessment process
  • Deciding whether or not to be listed for transplant
  • Advance care planning
  • Experiencing life on the transplant list
  • Staying healthy in preparation for transplant
  • Preparing for a call
  • Handling false alarms
  • Coming off the transplant list or choosing not to have a transplant
  • Finding financial support

The transplant process

You will also find information on the transplant process itself, including:

  • Information about the transplant operation, including spending time in the Intensive Care Unit (ICU)
  • Recovery and rehabilitation
  • Dealing with potential complications
  • The psychological impact of transplant

Life after transplant

Finally, we have provided information about life after transplant, which includes:

  • Family planning
  • Restrictions post-transplant
  • Alcohol and drug use post-transplant

Further information and support

We hope that the information and stories in these booklets will help you better prepare for the transplant process, encourage you to ask questions, and seek support.

The trained staff at the Cystic Fibrosis Trust helpline provide an information service and a listening ear, as well as further details about available grants, including a transplant grant. You can contact the helpline on 0300 373 1000 or at helpline@cysticfibrosis.org.uk

Transplant-specific support

Details about support groups specifically for people going through liver transplant: www.pscsupport.org.uk/support-groups-transplant-units

Harefield Hamsters provides support to people who have had, or are waiting to have, an organ transplantwww.harefieldhamsters.org

General psychological support

Butler and Hope (2007) 'Manage your mind' is published by OUP Oxford  

Northumberland NHS Trust have developed a range of ‘self-help’ leaflets: web.ntw.nhs.uk/selfhelp

Post-transplant activities

Transplant Sport is the UK’s largest charity promoting active recovery for transplant recipients and increasing awareness of the benefits of organ donation: www.transplantsport.org.uk

How we’re working to make organs more available

There is a shortage of suitable donor organs, and approximately a third of all those on the waiting list for a lung transplant will die before they receive a donor lung. We are committed to increasing access to successful lung transplants – find out more about our Hope for More campaign.

Read about research we are funding into how to make more donor lungs viable for transplant.

NHS Organ Donor Register

Right now, there are around 6,300 people in the UK who need an organ transplant that could save their life or improve their quality of life, including around 70 people with CF waiting for vital organs.

If you want to help someone live after your death, join the NHS Organ Donor Register and tell your family you want to donate.





Research we're funding

The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis. Take a look at some of that work and the progress that is being made.

Discover more

What is cystic fibrosis?

Find out more about cystic fibrosis, its diagnosis and how it is treated, as well as useful links to our publications and other organisations who can help.

Read on

More information

If you would like to find out more about any of our campaigns, publications or anything else, get in touch and we'll be happy to help.

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