About 280 need a single or double lung transplant. There is an increase in the unmet need resulting in longer waiting times.
One of those waiting for donated lungs is Ron Flewett, 61, from Lincolnshire, who has been on the waiting list for 12 months.
“I will always remember the day I was put onto the list,” said Ron.
“It was a day of mixed emotions. I was pleased to be on the list, knowing that I needed a transplant, but I was also very scared that this was happening to me. People would always say ‘but you look so well’.”
A father of four and grandfather of five, Ron was diagnosed with idiopathic pulmonary fibrosis in April 2014.
IPF is a condition in which the tiny air sacs in the lungs, called the alveoli, become scarred and damaged, making the lungs stiff.
This means it is difficult for oxygen to get into the blood and breathing is increasingly challenging.
Idiopathic means the cause is unknown; there is no cure.
There are several treatments that can help to relieve symptoms and slow down disease progression, but for some patients like Ron the end-stage treatment is a lung transplant.
Ron was diagnosed with idiopathic pulmonary fibrosis in 2014.
To mark Organ Donation Week 2022, where people across the UK are encouraged to share their organ donation wishes with their loved ones, Ron and his wife Maxine have shared their experience of life on the list.
“Every day we have to be ready for that call. It is a challenge living life like that, not knowing if today might be the day”, Ron explained of the emotions attached to his situation.
“Every time my phone rings I think ‘is this going to be the call? Is my life about to change’.
“We also cannot go too far from home in case that call comes and we need to head down to Cambridge. My family are the same; they do not want to be too far from home, never mind out of the country, in case I get that call.”
Maxine is also Ron's carer, as he needs to be supported with additional oxygen every day.
“The challenge for me is that I need to keep Ron fit and motivated while he waits. I have to keep him protected, free of infections and we have to be so cautious,” she added.
“It doesn’t just impact Ron and I, but our family and close friends too. We have a great group of friends who are so supportive, but it can be tough when you have to keep saying ‘no, we are still waiting’ week after week.”
Even though the organ donation law in England and Wales has changed to opt-out, families will always be consulted and get the final say.
Each year hundreds of opportunities for transplants are missed because loved ones are not sure what to do, meaning people like Ron go on waiting.
The median waiting time for a lung transplant in the UK is 422 days, though Royal Papworth Hospital patients on average wait half of that, at 212 days.
“If I get the transplant, it extends my life. We have so much left that we want to do.
“There is trepidation about what we have to face, what that phone call could mean, but it will change our lives. My wait goes on, but I am hopeful my day will come.”
Ron is also a patient research ambassador, passionate about improving treatment and outcomes for others like him in the future.
“Ever since I first became a patient at Royal Papworth in 2013 when I was referred for lung scarring, I have been involved in several clinical trials for new drugs.
“My message is simple: if there is no research there will never be a cure for these awful diseases. Research gives hope to others that they may have a future.”
Find out how to support Organ Donation Week 2022