Lincolnshire grandad receives life-saving double lung transplant nine years after diagnosis

• Report by Matt Price

A grandfather who was given between three and five years to live has received a life-saving double lung transplant.

Ron Flewett, from Torksey in Lincolnshire, was diagnosed with a lung condition in April 2014 and told that he would need a double transplant to survive.

The 62-year-old was put on the transplant list in October 2021 and, almost two years later, he received the donation.

Mr Flewett has written a first person account of his transplant journey for ITV News.

Ron’s Transplant Journey

I was diagnosed with a lung condition called Idiopathic Pulmonary Fibrosis (IPF) with a prognosis of three to five years to live. Being in my fifties and extremely fit, I found this news hard to cope with.

As my disease progressed, it was made clear my only chance of surviving was to get a double lung transplant. However, only a small percentage of people get through the three-day assessment for this, and I was told it would be a long wait to get the transplant.

I decided after some consideration that a transplant was my only option to possibly extend my life.

I was put forward for the intensive assessment during. It was made very clear to my wife and I that 20% of people do not survive the transplant procedure and that you are swapping one set of problems for another set.

Despite all of this, we felt any extension on my life would be worth the risk.

I was lucky enough to be put on the transplant list on October 1, 2021.

While I was hugely relieved that I had a chance to extend my life, there were certain steps I had follow which put some restraints on our lives.

For example, I had to make sure I did not get any infections such as colds, flu and COVID. This restricted who we could see, where we could go, and what we could. We chose not to visit pubs, restaurants, and shops.

Another condition of being on the transplant list was that we had to tell the transplant centre if we travelled more than one hour away so they knew where to collect me from.

We got everything ready, packed our cases and organised where to stay. At first, I felt mixed emotions while I was waiting for the call. I was scared and excited.

As the first year passed, the excitement turned to despair. I wondered whether this was ever going to happen.

This led to feeling isolated and despondent. All the time, my illness was progressing and I kept thinking 'will I lose that window of opportunity?'

As we went into 2023, my condition got worse and I was placed onto the hospital's priority list. This led to renewed optimism and raised our hopes.

After three or four months our enthusiasm waned - even though the consultants assured us the transplant would happen.

Then, one day in May, I was attending an appointment at Royal Papworth Hospital and my guard was totally down. That was when the call we had been waiting for finally came. 

My first reaction was to burst into tears. I felt disbelief that it was finally going to happen and extremely scared of what lay ahead.

My thoughts immediately went to the donor and their family.

During this time, I had to undergo many tests to ensure I was fit enough for the transplant and free from any infection. They also had to check that our lungs were compatible.

If any of these things weren't right, the operation would not have gone ahead. This was a very intense time because I knew it could all be stopped at any time.

The operation finally happened - 12 hours after the call.

The first lung went in easy. It only took three and a half hours. However, the second lung caused lots of complications and this impacted on my heart.

In the end, I was put on a heart bypass and, thanks to the skill of the surgeon, I finally made it to the intensive care unit after a total of 13 hours in surgery.

My wife was told the next 48 hours were crucial. I ended up being in intensive care for an entire week.

The stress on my wife and daughter during this time was hard, but without them being by my side 12 hours a day I would not have made it through.

After this, I was transferred to a ward but unfortunately, one week later, my sternum collapsed. This caused more complications and I needed a second major operation to fit a titanium plate to hold my sternum in position. This meant a further five days in intensive care.

My whole focus during all of this was to get home and get fit enough to try and start a normal life with my family without having the previous restrictions I faced.

My main thoughts now are with the donor and their family for the wonderful gift they have given me, and I want to do the best I can throughout my life to honour them.

I am well aware that I would not be here today if not for the dedication of the staff at Royal Papworth Hospital and the love and support of my wife and daughter.

On several occasions I found it hard to keep going. But, I am alive today and writing this because of my transplant.

I cannot express how important organ donation is. It changes people’s lives and gives them hope.

Since my operation, a lot of people have asked me if I would do it again considering all the complications I faced. The answer is YES.

Want a quick and expert briefing on the biggest news stories? Listen to our latest podcasts to find out What You Need To Know.