salbutamol inhaler: Cystic fibrosis medicine
Cystic Fibrosis

Organ Donation: are you on the list? (EVLP, lung transplants and CF)

Currently there are around 8000 people in the UK on the organ transplant list, around 70 of those are people with Cystic Fibrosis waiting for a lung, heart or liver transplant- or multiple transplant.

I have been on the organ donor register since I was a teenager. I always thought how good it would be to be able to provide the gift of life to some stranger after I am gone, using body parts that I will no longer have a use for.

I never thought it would affect me, as is the human condition, but now I have a child with Cystic Fibrosis I am aware that one day my son may need an organ transplant, or even multiple transplants- it’s not definite but it’s a much more real prospect than I ever imagined it could be.

Most people wouldn’t hesitate taking an organ that someone else has donated to help save their loved one- but don’t wait until then to think about organ donation. Sign up to the NHS organ donation register today by clicking this link.


As there is no cure for Cystic Fibrosis lung transplants are often needed to help people with CF prolong their life. Despite the high demand for organs 30% of people with CF waiting for transplants will die before they get the organs they so desperately need to survive.

One of the reasons for this is that there’s a shortage of organ donors.

Another reason is that up to 80% of donated lungs are not deemed suitable for transplant and discarded. The Cystic Fibrosis Trust has funded research by the DEVELOP-UK study into EVLP which is short for Ex-vivo Lung Perfusion- this is an experimental technique that takes donor lungs that have been functioning poorly or deemed unsuitable for use and assessing them and potentially improving them so they are safe to use in clinical transplantation.

The DEVELOP-UK study says

” EVLP is performed outside the organ donors or transplant recipients body by connecting the donated lungs to the EVLP system- a modified heart-lung bypass machine. The EVLP system warms the lungs to body temperature and pumps a specialised nutrient solution called ‘perfusate’ through them. At the same time the lungs are ventilated with oxygen by connecting them to a standard intensive care unit ventilator. EVLP provides the opportunity to carefully assess donor lung function over a number of hours before making a decision on their usability for transplantation.”

EVLP machine

So if you want to make a real difference to someones life I urge you to put yourself down on the Organ donation register today– you never know one day you may save my son’s life.

salbutamol inhaler: Cystic fibrosis medicine


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