Lung transplant patient given the chance to be spontaneous, active and enjoy the simple things in life again

Louis Knibbs, a 44-year-old father and partner from Silverstone, Northamptonshire, is revelling in the routine things in life again, something which would have been unthinkable three and a half years ago when he was put on the transplant list in desperate need of a double lung transplant.

Louis always led an active lifestyle; playing football, swimming and competing in motocross, but 15 years ago he noticed he was struggling to maintain his fitness. His partner, Helen, suggested he get it checked out. After being referred by his GP and following tests, doctors at Royal Brompton Hospital found a mass on his lung. This was managed successfully for nearly 10 years with medication and he was able to return to the sports he loved doing.  However, five years later he caught pneumonia and his condition worsened.

“My lungs had deteriorated to a point where I had to be on oxygen and I was physically unable to do any sports. I developed hypersensitivities to things like damp and straw, but it was always difficult to pinpoint the causes. These had instant and severe effects on my breathing.”

After consultation with specialists, Louis was placed on the organ transplant list in March 2019. He was told to build up his fitness to give himself the best possible chance for a successful recovery upon receiving a transplant. Working with a personal trainer, Louis improved his fitness levels, “he started as a personal trainer, but he quickly became a close friend. He knew where my limits were and he wanted to train me to be the best I could be.”

Only six weeks after being put on the transplant list, Louis was called by the transplant team at Harefield Hospital who had a pair of lungs for him. He drove in the dark and rain to the hospital, only to be told shortly after arriving that unfortunately the lungs would not be compatible.

 “This crushed me. That drive over to Harefield, I had built it all up in my head, I thought this would be the beginning of my recovery and we could all start to move on from my illness as a family. When I got home, I had to take some time off work to get things straight in my head so I could learn from it and grow stronger.”

Louis received a total of eight false alarms for potential lungs. During this period, he also became ill with Covid, his fitness levels declined and he started to become worryingly close to going past the window of opportunity to receive a transplant because of how sick he had become.

This was until a phone call at 6am on New Year’s Day 2022.

Louis received a donor set of lungs at Harefield Hospital after nearly three years on the transplant list, but he wasn’t out of the woods.

Helen, Louis’ partner said, “The operation went well, I was called by the surgeon to say Louis was waking up in record time. He was able to sit up only a couple of days after surgery, which was a significant milestone. It was only at the third day following surgery that things started rapidly going downhill.”

Louis had developed a major infection which his body couldn’t fight on its own. After exhausting all antibiotics available to fight the infection, he was placed on ECMO (extracorporeal membrane oxygenation) a machine which pumps blood through an artificial lung outside of the body when a patient’s own lungs are unable to function properly.

“That really could have been the end for Louis. We were at the last resort and I was starting to think ‘what if I have to say goodbye to him?’”

After two weeks in a coma, Louis began to make improvements. Slowly, with the support of physiotherapists and nurses, he was able to go from sitting up, to moving around with a wheelchair, to eventually returning to walking unaided and visiting the sunshine garden daily at Harefield Hospital. Louis was eventually discharged from the hospital at the beginning of April.

“I got to know everyone in the hospital, from the porters and cleaners to the doctors and nurses. It felt like a supportive family for me when I couldn’t be with my own and I will never forget any of them. They saved my life and have guided me back to where I am today.”

Although his journey to recovery was long and tumultuous, Louis has continued to improve and has been able to return to normal life.  Louis and his family have been on holiday twice since his discharge from Harefield Hospital, including a trip to Devon where Louis was remarkably able to tackle a five-mile coastal hill walk comfortably. He has also returned to the sports he loved prior to his transplant and is planning on mountain biking the length of the Grand Union Canal from Birmingham to Harefield hospital to raise money for the hospital next year.

Some of the greatest achievements since returning home have been more routine; from doing the washing up, or playing with his 10-year-old daughter Ivy, or taking his bulldog Rosie on walks.

“The past few years have taken a toll on the whole family, and we can now start to return to a normal family life. Being able to do the simple things and the spontaneous things again are really what I cherish most about my recovery.”

Building on his learnings of going through the organ transplant process himself, Louis has begun to mentor another patient who needs a transplant. He hopes to be able to offer advice and guidance to ease the emotional toll for others going through the same experiences.

Reflecting on his journey to receiving his transplant Louis said, “I am just so thankful to everyone who helped me along the way. They don’t realise what effect they have had on me, my family and my life.

“There were a lot of low points in my journey, but the high points are coming thick and fast now. I wouldn’t change any of what I’ve been through for the world, even the bad stuff, because it has made my family stronger and made me realise that life isn’t so complicated, and you should appreciate what you have in the moment.

“I am grateful beyond words to the donor and to their family for giving me the gift of life. I would like to think the family are proud of how I am honouring their loved one by doing everything to get everything out of life.”

Dr Vicky Gerovasili, Consultant in Respiratory Medicine and Transplant Medicine at Royal Brompton and Harefield hospitals said, “Louis’ story has been a medical and emotional rollercoaster with a happy ending. Donor lungs are a scarce resource and it’s not uncommon for patients to wait for years for a suitable organ. The lung utilisation rate (the proportion of lungs found suitable after they are donated) is less than 20%, which partially accounts for the many aborted calls that Louis received.

“Seeing patients like Louis doing so well is what motivates me to come to work every day. It makes it all worth it.”