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The Heart & Lung Transplant Clinic is celebrating its 21st Birthday in 2010. Regular celebrations are being held through the year...read more
(right_hand_side)The Website of the Heart and Lung Transplant Trust (Vic) IncThe Website of the Heart and Lung Transplant Trust (Vic) IncThe
Jon Rolfe
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.
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, but
every movement is strained and difficult.
The muscle fibres begin to adapt to this low oxygen environment,
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 dishelleved,
drugged up, individual stared back at me.
The cut across my chest looked like a very bad ‘boob’ job.
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
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.
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.
The hospital transplant team encourage all recipients to set goals.
I’m thinking big and the idea of cycling 40km in a team
triathlon is suggested by friends.
Having missed out on Noosa a few years earlier, I’m
determined to set the record straight.
Jane is keen to do the individual event, so why not make it a
family holiday as well.
Jane joins a tri-fitness club, but I’m stymied.
I’m not allowed to do group classes, the cross infection risk
is too great because of the immuno-suppression drugs I’m taking.
I’m too scared as well, imagine never having done group
exercise in your life before, and knowing your fitness is so far
behind everyone else. I
can’t run yet, the chest pain is too intense, I can’t swim yet,
doctors advise against swimming pools this early,
and cycling on the road requires way too much confidence at
this stage.
So I’m doing the only thing I can, cycling in the home gym on a wind
trainer. My confidence
builds and then I’m cycling to the Alfred hospital for check-ups.
I’ve yet to progress to pedal clips though, that’s a bit too
far.
Breathing while exercising now is amazing.
Its like I’m just sat in the chair, while my legs are
spinning, so this is what ‘normal’ people feel like!
Wow! Only trouble
is now the rest of my de-conditioned body has to catch up.
My skinny legs need some muscle, and fast.
The boys from Tri-Fitness don’t give up on me.
Within a short time, Matty, the cycle trainer, is coming
round the house giving me one-on-one spin sessions.
There is nowhere to hide.
He is encouraging me to get on the road bike, clips and all,
and circuit Albert Park lake, finally I do it.
Now that hurdle is cleared its time for the
Black Rock and back is the first milestone, 25km that’s the furthest
I have ever gone on the bike, even in my ‘fit’ days.
Then Matty lifts the bar again, he wants me to cycle Black
Rock to Mordialloc with him early one morning.
Bike in the car and off I go to park up at Black Rock, to
discover Matty has wimped out, some little flu thing he reckons.
‘Flu?? Come on I’ve had a double lung transplant, no sympathy
from me!
So am I going to head home, or conquer Mordy?
Well here I am 6.15am, pointless to go home, I’m on the
bike and off I go. I
discover the steep hills, although I’m sure to everyone else
these are gentle rollers, but I’m pedalling up albeit in the
lowest gear as the Beach Road cycle packs fly by.
I’m gaining confidence and speed each week.
The hospital clears me to start swimming again and I’m in the
pool, feeling what it is like to breathe normally and swim.
I discover I don’t have to suck in the air like a
drowning man anymore, there is plenty of capacity to spare,
small breaths only thank you.
What an incredible difference.
Kane, from Tri-Fitness, is writing my programs now.
I’m beginning to feel like a ‘proper’ athlete.
Swimming (2 sessions), cycling (4 sessions) and some
additional core work with my exercise physiologist, Chris,
become my weekly routine.
It is all going so fantastically well, when disaster strikes.
My body has had enough of all this exercise, and I suffer
a prolapsed spinal disc in the L5/S1 joint.
Constant pain shoots down my leg and I’m stopped in my
tracks. My new lungs
and mind are willing, but the body is not.
Physiotherapist, chiropractor, orthopaedic specialist all
get involved and I’m reduced to the only exercise possible -
walking in the hydrotherapy pool.
Noosa hangs in the balance.
In fact, nobody gives me a chance of making the
triathlon.
Gradually though the pain reduces, gentle stretching and every
day walking in the pool seems to be helping.
I’m finally able to walk properly again and I tentatively
start swimming. I’m
then trying the bike and finally, after 2 months of sidelining,
I’m back to training again.
My calf is still a problem though, so running is
impossible.
Matty is on my case again, and he drags me off to
I’m even brave enough to start group swimming sessions, although
you wouldn’t believe how nervous I was for the ‘first day at
school’. The
Tri-Fitness gang make me feel welcome, despite being the slowest
swimmer.
The penultimate training ride was a
The final crowning achievement in training was to ride up
Unfortunately, during this week Jane had an altercation with a
magpie while cycling and lost rather heavily.
6 hours in Frankston hospital, and her Noosa dreams were
over for this year.
Battered, bruised, in shock but nothing broken, thank goodness.
It was a rarity to be the carer in hospital!
And so to the Noosa Triathlon……………..
The first race post transplant, with adrenalin pumping my Team
Lazarus swimmer, Joules, hands the timing chip over and I leave
transition. Let me
tell you, it’s a long way from the team bike racks to the
mounting area when you can’t run.
On the bike I hop and I’m away, the crowd is infectious and
excitement takes over - I’m pedalling like a mad man, breathing
out of control, legs pumping.
I’m trying to calm myself as I can’t maintain that effort
for 2 hours. As the
crowd thins, I slow back into a rhythm and settle in for the
long haul.
Next stop is the big hill 10km out.
Its 3km long and steep.
I’m feeling confident about the hill having completed it
a couple of days before the race, but that was relaxed, I’m
gunning for it now.
I hear Matty’s words – “lock in the core Jonni, smooth and
relaxed on those pedals”, it’s a mantra to repeat as I climb,
smooth and relaxed.
Before I know it, I’m trying to look good for the cameraman as I
near the top and all of a sudden I’m screaming with delight as I
crest the summit.
Now for the rest of the ride…..........
On the way back to town I pass the closing course vehicle
heading to the turnaround point, I’m praying that’s the first
and last time I see it, I’m desperate not to be last.
Fairly soon, I’m on the downhill straight and I tuck
down, avoid the brakes and let the bike fly.
67km/h I hit on the speedo, never, ever been that fast on
the bike before, and miraculously I managed to pass somebody –
put the flags out!
I’m into the last 15mins when my body starts to falter.
One of my groin abductors decides now is the moment to
fatigue. That early
pace has finally caught up with me.
I’m left cycling 15 strokes before the pain gets too much
and I have to coast for a while, then stroking again for 15 and
coasting, a pattern that is the only way to get to the finish.
And then the rain shower starts, just to add to the
discomfort.
Finally I’m on Noosa Parade and the crowds start to grow.
Then I see the cheer squad, a very proud wife Jane and
nephew Christian, “Go Jonni New Lungs!” is the cry and all of
sudden the groin doesn’t hurt anymore, I’m cycling into the
finish with a sprint.
I dismount and walk into transition, all the organisers are
clapping and cheering, teammate Joules has been busy telling
them my story. She
gives me a huge hug and off she goes to complete the run for
Team Lazarus.
I’m done with the 40km in a little over 2 hours, a massive
personal best, thanks to Team Jonni - the Alfred hospital team
of doctors, nurses, surgeons, physios and other support staff,
Matty, Jimmy & Kane from Tri-Fitness, Chris, my exercise
physiologist, Carmen, the chiropractor, David, the local
physiotherapist, Ros & Tash the masseuses, and my darling wife
Jane.
It’s my tribute to the anonymous donor who gave me my life back
again.
