Jon Rolfe, 45, is passionate about the Heart and Lung Transplant Trust (Victoria). He is the current Chairman of the Second Chance Task Force and former Secretary, former Treasurer and formerly on the Management Committee. Jon was the lucky recipient of a double lung transplant in 2009 due to the debilitating effects of cystic fibrosis.
When his lung function declined to under 30% Jon was listed for a double lung transplant and received the lifesaving call on 27 March 2009. Jon found the first 3 months after surgery very tough to deal with but the constant support of Jane, his wife, and The Alfred team saw him through. The generosity of the donor & his family is something that overwhelms Jon and he tries to honour the memory by making the most out of his life.
“My battle with cystic fibrosis had lasted 41 years, a pretty good innings by anyone’s standard, but I was beginning to falter. My lung function had dropped to less than 30% of normal. At this level, every day-to-day task is a struggle. Have a shower, take a rest, dry off, take a rest, get the clothes out, take a rest, put the clothes on, take a rest, hit the couch and the Foxtel button – that’s my day.
Exercise was vitally important to make the most of what I had and, in the latter stages of the disease, requires supplemental oxygen to get through the congested lungs to arrive at depleted muscles. The muscle fibres begin to adapt to this low oxygen environment, but every movement is strained and difficult. Lactic acid thresholds are much reduced, so that muscle burn comes on almost immediately. If I could mange 3 squats at a time I was having a good day.
Swimming? Forget it. Running? In your dreams. Cycling? Only limited spin, in the easiest gear, at home hooked up to that oxygen bottle. A few weights thrown in for good measure. Walking >100m was nigh on impossible.
All that changed on 27 March 2009. I was the lucky recipient of a double lung transplant. While the donor family grieved, my old lungs were being removed and the new set were being put in their place, less than 4 hours after being taken from the donor. I was opened up like a clamshell, cut from armpit to armpit, with my sternum broken and then re-wired up after it was all done.
It wasn’t all cheers and smiles the day after though. I was kept asleep for 4 days in ICU, ventilated with tubes coming out of every available orifice and some new holes created just for those tubes that wouldn’t fit anywhere else. My caring angel, wife Jane, had to look on helpless.
Gradually, day by day, things improved. Progress was counted by how many tubes were still left attached. Pain, hallucinations, panic attacks, countless drugs, x-rays, scans, blood tests, bronchoscopies were all part of the landscape. The first step was to get out of bed and into the chair. What a mission that was, 3 people to help and I could only bear to sit for 5minutes before the pain got too much and I had to summon the team to climb back into bed.
The day I was able to walk 5m to the bathroom unaided was a day to cheer. Mind you, I caught a glimpse of myself in the mirror, and this dishevelled, drugged up, individual stared back at me.
As the pain started to subside, I began to get more mobile. Walking around the ward was the next milestone, followed by a wheelchair trip to Fawkner Park outside The Alfred hospital.
12 weeks rehabilitation program in the hospital gym was next. Day one was a blurry haze, my haemoglobins levels way too low, puffed up on fluids like the Michelin man advert, staggering like a 3am drunk. All the time being cheered on by Jane. Read a Good Weekend interview on how Jon met Jane here.
It started with a 10min slow walk on the treadmill – 3km/h was the fastest I could manage, followed by 10mins slow pedalling on the bike and strengthening exercises. Gradually over the 12 weeks, I learnt to breathe differently and get stronger. The treadmill speed increased and then the incline button was engaged. The day I graduated to the ‘back row’ of the bikes was another achievement. These bikes have a nasty hill program that was the challenge.
Gym graduation day was soon upon me and the final test – a 6 minute walk test. How far can you walk in that time? I was aiming for the hospital record of 733m, of course, did I mention that I’m very competitive? When it came to it, I managed 705m, well within the ‘normal’ range.”
Careerwise, Jon left university and qualified as an actuary before becoming an investment banker. He was involved in numerous complex financial transactions, travelling around the world, before his illness became too incapacitating in the lead up to transplant.
He returned to work in late 2010 before retiring from full time paid employment in 2011. Since retirement Jon has become the Treasurer to two other not-for-profit organisations as well as his work with HLTTV.
The hospital transplant team encourage all recipients to set goals and for Jon this was one of the easier aspects of the transplant journey.
Jon is keen on keeping fit and attempting numerous sporting challenges. He has completed triathlons in the UK, USA and in Australia. He completed a 40km bike ride as part of a Noosa triathlon team 7 months after his transplant, read the story here.
The Noosa triathlon in late 2011; a 1.5km swim, 40km bike ride and 10km run was the longest and most difficult. He trains with, and inspires, the other members of his triathlon club, his nickname being “Jonni New Lungs”! Read about the Noosa triathlon here.
He also participates in many open water swims around the Melbourne bay over the Summer and has done the Lorne Pier to Pub swim four times.
Jon's most recent challenge was the 2.4km swim from Alcatraz Island to shore in the cold San Francisco Bay in July 2012. He completed this successfully, being the first double lung transplantee to do so. Read the full story here.
On many days you can find Jon training in the Prahran outdoor pool at 6am under the watchful eye of his coaches. Ever grateful to the donor that made his second chance at life possible, Jon tries to make the most of this precious gift.
Jon is also the proud father of Isabelle, his 2 year old daughter, and Samuel born in April. It is another reason for Jon to be thankful to his anonymous donor and the miracle of transplant. Jon looks after Isabelle two days a week in his role as “daddy day care”!
“Having a family is something that would have been too difficult to cope with before transplant. Jane had enough to deal with caring for me and I had enough to deal with trying to stay alive. The joy of fatherhood is indescribable.”
Jon is enthusiastic about helping others through the transplant journey, having experienced its hardships first hand. It is one of the reasons he gives his time voluntarily to HLTTV.
“Giving back by volunteering with not-for-profit organisations and working hard at sporting events to celebrate life – it’s my tribute to the anonymous donor who gave me my life back again. Thank you is nowhere near enough.”