Rather than ‘sit around thinking I’ll die soon’, Ron and wife Maxine tour the globe
Since his diagnosis in 2014, Ron, 59, and his wife Maxine have visited a staggering 56 countries as he races to complete his “bucket list” before the terminal lung disease makes travel impossible. So far the devoted couple, who downsized to free up cash, have travelled to all four corners of the world, ticking off everywhere from Iceland to Thailand and Malaysia to Malta – and even squeezed in getting married.
Ron and Maxine, 59, have also visited another 13 islands and territories around the world and most recently cruised to Brazil in November to tick off country number 56.
They hope to complete their foreign forays before Ron – given three to five years to live in 2014 – is put on the list for a double lung transplant which will limit opportunities to travel abroad.
IPF has a prognosis worse than many cancers and most sufferers go on to develop respiratory failure and die of suffocation as their lung capacity reduces.
The disease – which kills 5,300 people every year, one in every 100 deaths in the UK – creates a build-up of scar tissue in the lung which makes it thick and hard and less able to take in oxygen.
Regardless of treatment, people with IPF – which usually strikes those in their late 40s or early 50s –on average live for only around three to five years from diagnosis.
Although still considered a rare disease, IPF has in fact become more common in both the UK and the US over the past 30 years.
Determined to remain positive, Ron and Maxine have splashed out on a motorhome to be nearer home if and when a suitable donor can be found.
Ron and Maxine have visited another 13 islands and territories around the world
Former triathlete Ron from Torksey Lock in Lincolnshire says in April and May they plan to complete the Scotland 500, a scenic road tour taking in the north coast. “If we can’t travel the world, we’ll tick off a few places we are both yet to see in Great Britain,” says Ron. “Then if we do get the call and are told to come in for a transplant, we will not be too far away.
“I am not just going to sit around thinking ‘I am going to die soon.’ I am living life to the full.
“Maxine and I have downsized our home and are using the money to travel as much as we can – but I know things will be different when I go on the transplant list.
‘’That may happen next year. The consultant has essentially given me an extra year to enjoy rather than put me on the list now, and so we are making the most of it.
“People think that having a lung transplant solves the problem, but it actually creates a whole lot of other problems.
Ron, who also has two daughters, two step-children and three grandchildren, added: “It can lead to skin cancer, lung cancer and even type 2 diabetes.
“Some people who have a lung transplant live another three or four years, but others can live for just two or three weeks afterwards.’’
Ron first went to the doctors when he found himself short of breath during a training session for a triathlon seven years ago.
Doctors scanned him and sent him home after finding nothing amiss. A year later even walking up stairs left him panting.
The devastating diagnosis came another 12 months later in April 2014.
Desperate to make the most of their time left together, Ron and Maxine created a spreadsheet and set about buying tickets for their trips. The following year they cruised to Morocco, Menorca, Madeira and the Med, including Gran Canaria, Lanzarote, Tenerife and Las Palmas.
Then in April 2016, they flew to the Caribbean and visited Barbados, St Martin, the British Virgin Islands, St Kitts, Antigua and St Vincent.
A cruise around Italy, Sicily, Corsica and Greece followed in October 2016. In January 2017 they headed off on another cruise to Dubai, Oman, Abu Dhabi and Qatar.
In early March they took in New York and soon after they got married at Barnsdale Hall Hotel in Oakham, Rutland. A cruise through the Suez Canal visiting Spain, Gibraltar, Greece and Jordan followed.
Ron, pictured in New York, wants to tick-off a ‘bucket list’ of visiting 50 countries before he dies
A cycling holiday in Scotland and a zip wire in Snowdonia, Wales, was next. Then Ron headed off to attend IPF conferences in Lisbon and Brussels.
In July the couple sailed from Southampton to the Norwegian fiords, Iceland and back to Dublin.
Vancouver, Alaska and the glaciers were next, then Victoria in Canada and on to Astoria in Oregon. In November they cruised to Gran Canaria and Cape Verde, across to Barbados, Bonaire, Curacao, Aruba, the Panama Canal, Colombia and Jamaica.
In May 2018 Ron and Maxine cruised to Sweden, Denmark, Finland, Estonia and Russia, adding another five countries to their total.
And later on in the year they cruised to Colombia and the Panama Canal. After welcoming in 2019 Ron and Maxine embarked on a two-week cruise to Thailand, Cambodia, Vietnam, Malaysia and Singapore.
Not long after they returned home from their latest break a routine doctor’s appointment brought the couple crashing back down to earth.
Ron, a former technical salesman in heating and ventilation systems, was told his lung capacity had reduced from 62 per cent to 53 per cent.
The consultant explained the anti-fibrotic drug he had been on had stopped working and that he had lost nine per cent of his lung capacity in just six to nine months.
After a heart-to-heart with Maxine, a former company secretary and foster carer, Ron opted to switch to Nintedanib, which he always considered his “safety net” if the Pirfenidone stopped working.
Ron has also now undergone a lung transplant assessment – a three-day examination of a patient’s physical and mental health – and is hopeful of joining the list.
The pair sunned themselves in the British Virgin Islands, Caribbean
Amid the realisation their opportunities to travel the world may soon be limited, the couple headed off on a 25-night cruise to Jamaica, Mexico, Grand Turk, Bermuda, Guatemala, Honduras and Belize.
During the summer at a follow-up appointment Ron was told by his consultant that his positive attitude and love and support of Maxine had enabled him to “defy the odds”. The doctor told him: ‘I have carried out transplants on patients with the same lung capacity as you’.
Mike McKevitt, director of patient services at the British Lung Foundation, says: “We’re inspired by Ron’s positivity and sense of adventure. We hope Ron and Maxine’s travels provide hope for anyone living with a lung condition.
“Idiopathic pulmonary fibrosis is a devastating illness and sadly there is no cure yet. Through our research we’re hoping to find out what causes the condition so we can better treat it.”
- For support or advice on IPF call the BLF helpline on 03000 030 555