I received a double lung transplant at the end of June 2019, at the age of 47, as my lungs were failing due to Pulmonary Fibrosis. 

I was diagnosed with Chronic Hypersensitivity Pneumonitis in 2013 which causes slow and irreversible scarring of the lungs. In December 2017 I was recommended for transplant. By April 2018 I was on the waiting list and I gave up work as a freelance TV Director – as you can’t commit to a job when you might be called into hospital at any moment! 

My Fibrosis was progressing steadily and, in August of 2018, the consultants at The Harefield said I really needed a transplant by Christmas. But Christmas came and went without any lungs becoming available and I continued to deteriorate. I was already using supplemental oxygen full time and I didn’t have much strength for getting around. By February 2019 I could no longer manage stairs, so I was confined to the upstairs bedroom and bathroom at home. By April, getting out of bed was becoming completely exhausting so, one day, I lay down on the bed and I never really got up again. 

Throughout this time, my incredible wife, Chloe, stayed by my side and gave up her job so she could become my full-time carer. My kids, Oscar (14) and Felix (11) were also super-helpful, brave and full of light and happiness.  

In May we had our first transplant call. The phone rang late in the evening, and we were so relieved as we knew that time was running out. We needed a full ambulance crew to carry me out of the house as I couldn’t get down the stairs – I couldn’t even sit up anymore without crippling breathlessness. We arrived at Harefield full of hope, and very nervous, but unfortunately the donor lungs were in poor condition when the surgeons received them, and I was sent home again. 

Then in June we had a second call. This time, I got as far as being fully prepped for surgery before the bad news came that the lungs were again no good. I was in pretty poor physical shape at this point and the hospital felt that it was time for me to be admitted. I needed to be put onto ECMO (a machine that oxygenates the blood outside of the body) to give me a chance to gain a little strength for the (hopefully) future surgery. So, I stayed at the Harefield and went into ITU. 

Being on ECMO qualified me for the “Super-Urgent” national transplant waiting list – there were only 2 patients on it in the UK at the time, including myself. But there was no immediate good news and I waited a further 2 weeks in ITU. During this time, my heart started to weaken so my ECMO was upgraded to assist my heart as well as my lungs. I also lost the ability to swallow and speak, and I was getting dangerously thin (I was 50kg, down from around 80kg at the start of the year – I’m 6ft 1in!). 

The amazing ITU team were a little worried about me and advised that I really should get my children to come and visit me – “just in case”. We had so far kept them away from the hospital as we didn’t want to alarm them, but one Sunday they came to visit. While they were there our Transplant Coordinator came into the room and said she had some incredible news. They had a suitable lung for me, and it was already checked and ready to go. 

Just a few hours later I was wheeled into surgery and the incomparable Mr. André Simon and his team gave me a second chance at life. The Coordinator said later that she saw my old lungs and couldn’t believe I had been able to live with them; they were so shrivelled and scarred! 

Recovery was a challenge as I had become so weak. I had to be ventilated through a tracheotomy for several weeks, which is exactly as much fun as it sounds. And I still couldn’t swallow or speak, or really move at all. But the incredible Physios had other ideas, and I came to dread their daily visits to force me out of my comfy bed. Of course, their incredible patience, despite my grumpiness, helped me learn to walk again, trailing tubes and wires along the ITU corridors. 

As the weeks passed, I moved from ITU to HDU then to the normal transplant ward. My voice returned to a sort of croaky version of its old self and my swallow got a little better. Not good enough to eat, but I was given a stomach PEG tube rather than the annoying nasal gastric tube – it was great to no longer have a bit of plastic hanging out of my face at all times! As tubes, drains and lines were pulled from my body one-by-one, each removal became a huge symbolic step towards recovery. 

Finally, 2 months after my operation, I could climb a flight of stairs and walk 100 meters. This meant I was qualified for discharge, and I went home on August 23rd, 2019. 

I’ve continued to recover at home. As my body has got stronger, my swallow has fully returned and I’m now eating and drinking normally. My vocal cords have started to wake up and I can talk again, and I’m going to the gym, taking long walks and being more active than I’ve been in years. I’ve put on most of the weight I lost; though thankfully not quite all of it, as I’m enjoying squeezing into some old shirts I had once given up on! 

I have literally been revived – from being completely bed-bound with all the frustration and discomfort that brings, I am now a healthy and active family man, looking forward to going back to work and enjoying every single moment of life. 

Transplant was my only hope and it has saved me, in every way.