Video report by ITV News Reporter Liz Summers
The number of people waiting for a lung transplant has risen by 46% over the past five years, the latest figures show.
There are now 354 people on the lung transplant waiting list compared with 242 five years ago, NHS Blood and Transplant warned.
In comparison, the overall waiting list for all organs has declined over the same period by 17% – down from 7,335 to 6,013.
NHS Blood and Transplant is calling on people to urgently talk to their families about organ donation this week – which is Organ Donation Week – because a lung transplant is the only long-term hope for everyone on the waiting list.
It said the ageing population, and improvements in trauma care and public safety, are likely to be contributing to the rise in the lung transplant waiting list, by changing the profile of donors.
Today’s organs donors are mostly over the age of 50 and more likely to have existing health problems. This can make the successful donation and transplantation of more delicate organs such as the heart and lungs less likely.
Another factor is thought to be an increased awareness of the benefits of lung transplants, leading to an increased number of referrals.
But it said family refusal remains the biggest barrier to all forms of organ donation and transplantation.
Although more people are supporting donation than ever, one in three families still decline to donate.
Laura Beattie, 29, from Stretford in Greater Manchester, has cystic fibrosis and was added to the transplant waiting list just over a month ago. Her lung function has declined in the last couple of years and is now at around 24%.
The Manchester United fan now uses oxygen in daily life and also a wheelchair at times when she goes out for more than a few hours. She also requires non-invasive ventilation – airway support administered through a nasal mask – overnight.
“I’ve known for more than 20 years that I would need a transplant one day but I was still terrified to be told I was going on the list because it made it real,” Ms Beattie said.
“But I know it’s the right thing to do. I get breathless even turning over in bed or getting dressed.
“I could be waiting a short time or a long time, I don’t know. I just try and get on with my life.
“I really hope more people support and really consider donation because a transplant is my only option now and donation can save so many lives.”
Around 17% of people listed for a lung transplant have died a year later.
John Forsythe, NHS Blood and Transplant associate medical director for organ donation and transplantation, said: “Last year, 65 people died on the lung transplant waiting list and many of those lives could have been saved or transformed had more families said yes to donation.
“Telling your family what you want also makes things easier at a difficult time.
“Sadly, many donation opportunities are lost every year because families don’t know if their loved one wanted to be a donor or not. We urgently need people to tell their families they want to donate.”