Patient donates life-size paper lungs to support organ donation

A patient with cystic fibrosis who had a lung transplant nearly 10 years ago has given a replica pair of lungs made using origami to Harefield Hospital.

Joe Russell, 47, spent two years designing the pattern. With help from Vicky Gerovasili, his lung transplant consultant, Joe was able to ensure every detail, from the trachea to the bronchi, was accurate and true to size.

Joe learned origami when he was 8, and used the Japanese art of paper folding to support his transplant recovery. He describes it as therapy. He said: “It buoys me up when I'm down, it is calming when I'm agitated and it focuses my mind away from my struggles.”

Joe created the replica origami lungs to show his gratitude to those who have cared for him, to his donor and their family, and to raise awareness of the importance of organ donation. 

Vicky has been Joe’s consultant since 2019. She said: “When Joe presented the origami lungs to me, I was emotional – I had never seen something so perfect. I couldn't believe how much time he had spent on the design and how real they looked. 

“For me, the origami lungs are a physical manifestation of what a lung transplant can give to someone – they represent a life being lived. Every time I see them, I think of Joe. And they give meaning to what I do and why I come to work every day.”

Although Joe gave the origami lungs to Vicky, she has loaned them to Harefield to be framed for display in the transplant unit of the hospital.

Joe was diagnosed with cystic fibrosis, a rare genetic condition that affects breathing and digestion, when he was 2. He said: “Compared with some people, I had it relatively easy. But in my 20s my lung function dropped dramatically and I was transferred to the care of Royal Brompton Hospital.”

Joe, from Worthing in West Sussex, received treatment for his symptoms and responded well. But in his 30s, Joe’s condition worsened and his clinical team advised he needed new lungs if he were to survive.

Joe added: “It was shocking how quickly I went from being mobile to being on oxygen. But fortunately for me, once all the assessments were done, I was only on the transplant list for a miraculous 10 days. The average in the UK is 18 months. I couldn’t predict the future, but that’s probably one of the reasons I’m alive, because it was so quick.”

On Christmas Eve 2015, Joe received his new lungs at Harefield Hospital. He was discharged after 3 weeks. He said: “After my transplant, I felt transformed. The change was so dramatic. I pushed myself hard with exercise, but learned to pare back. I just felt this joy of being alive.”

There are around 500 transplant patients in the outpatient clinic at Harefield Hospital, and 200 have cystic fibrosis. Many of their lives have been transformed by transplant.

Joe is passionate about spreading the call for organ donation. He said: “I and so many others wouldn’t be here without people signing up to be organ donors and, crucially, letting their families know their wishes.”

To find out more about organ donation and how to register your wishes, go to https://www.organdonation.nhs.uk/