Just over seven years ago, John Wallace, 55, became a lung transplant recipient. During Organ Donation Awareness Week he is telling his story to raise awareness of organ donation and the importance of letting people know your decision about whether or not you want to be a donor.
John had been working offshore for 25 years and, other than being diagnosed with asthma, had no health concerns. In May 2014, all that changed.
John said: “I went for a standard offshore medical and was told I had the lungs of a 90yr old - a bit of a shock to me at the age of 47yr old. I immediately contacted my GP and very quickly was sent for x-rays, scans and tests.
“I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF). This is a degenerative disease of the lungs where the air sacs weld together with scarring to be rendered non-functioning, in a similar way to asbestosis, but with no known cause. I felt ok for the first six months but then started feeling breathless doing simple things.
“Part of pre-transplant therapy is to try and remain as strong and fit for as long as you can so I attended pulmonary exercise classes. These are a light form of circuit training to work the arms, legs and lungs.
“After a year of that the breathlessness was such that I was on ambulatory oxygen, a carry tank with nose tubes, for walking and exercising. That then progressed to having an oxygen generator at home and being confined to the house due to the amount of oxygen required. I was then admitted to Raigmore Hospital when the generator did not supply what I required.”
John had reached the point where he was ill enough to require a transplant but strong enough to survive the operation. His consultant in Inverness would speak to the Freeman Hospital in Newcastle, the closest hospital to Inverness that carries out lung transplants, daily to push his case for transplant.
He said: “When I got the call I was transported down by air ambulance for a set of lungs, only to be told they were diseased. I remained in the Freeman and got a call two days later only to find one lung was damaged and I needed two.
“Following a collapsed lung a week later, I was put on an ECHMO machine which takes blood out, oxygenates it, and returns it back to the patient. After a week my surgeon came in and said 'I have a set of lungs for you, they are a good set which are too big for you but I will make them fit.' Nine hours later I didn’t just have a new set of lungs but was also off the ECHMO machine. A day later I had all drains and feeding tubes removed and was back in the ward. I was discharged and allowed home, 30 days after my transplant.”
Following an organ transplant it is important for patients to have a fitness regime. In John’s case it was to work the lung and build up muscle strength and fitness in general. He also had an option, as part of his recovery, to become a participant in the Transplant Games.
These are held each year in various UK cities and were initiated to promote and encourage fitness in patients. They have been running since 1978 and also include European and World Games. They are like mini Olympics with various sports including golf, football, swimming, cycling and a full athletics programme. You choose a couple of events and compete in your age range, which can be from 4yrs to 80.
John said: “I have competed in football at North Lanarkshire, volleyball, bowling and 100m in Birmingham and Newport. I won Bronze in volleyball at the Newport games. There is also a Donor Walk to honour the gift of life the donor has given us. All participants get a medal for taking part.
“You are told very little about your donor to retain anonymity but contact can be made with their family through the hospital Transplant Coordinator who ensures any identifying text is removed. Once both parties are accepting, direct contact is allowed. My wife and I sent my donor family medals from both Birmingham and Lignano, the European games venue. They replied delighted that their son had returned to Italy as a part of me and that both medals were hanging from his photo in the sitting room.”
He continued: “Personally, since transplant, I have got married, I have grandchildren and I have seen the children succeed in their chosen professions.
“In this Organ Donation Awareness Week please take the time to register your decision online and, most importantly, have the discussion with your family letting them know your decision. Remember one donor can change the lives of eight people and that of their families.”
To find out more about organ donation, including how to register your decision:
visit www.organdonation.scot