“Every day we have to be ready for that call”: Lincolnshire man on transplant waiting list for a year

A Lincolnshire dad in need of a double lung transplant has spoken out about being on the hospital waiting list for a year.

The median waiting time for a lung transplant in the UK is said to be 422 days, but patients of Royal Papworth Hospital in Cambridge have an average wait half of that at 212 days.

Father-of-four and grandfather-of-three Ron Flewett, 61, from Torksey said “I will always remember the day I was put on the list”, which he has now been on for 12 months.

“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’,” he added.

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. It makes the lungs stiff and means it it difficult for oxygen to get into the blood and breathing is increasingly challenging.

Idiopathic means the cause is unknown and there is no cure. However, there are several treatments that can help to relieve symptoms and slow down disease progression, but for patients like Ron the end-stage treatment is a lung transplant.

To mark Organ Donation Week 2022, which runs from September 26 until October 2, people across the UK are encouraged to share their donation wishes with their loved ones.

Ron said: “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.

“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.”

Ron’s wife Maxine is also his carer as he needs to be supported with additional oxygen every day.

Maxine said: “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.

“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.”

Ron is also a patient research ambassador, passionate about improving treatment and outcomes for others like him in the future. Since first becoming a patient at the hospital in 2013 he has been involved in several clinical trials for new drugs.

He added: “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.”

There are 6,700 people in the UK currently waiting for an organ transplant. About 280 need a single or double lung transplant, and there is an increase in the unmet need resulting in longer waiting times.

Royal Papworth Hospital is the main adult cardiothoracic transplant centre in the UK, performing more heart, lung and heart-lung transplants than any other hospital.