Brian's Story

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I would like to share his story on his behalf
as we made some discoveries on this journey
that helped his survival and most of all
the quality of his life.

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When dad was a teenager embarking on his life career
he had no idea the choice he made then
would impact on the way his life ended.
He became a boilermaker in his home town.
In 1951 he was gripped by the idea of the Army
and travel and enlisted and went to Korea
where he remained in service for 2 years.
He did not return to NZ from Korea,
instead he went to Queensland Australia
where he met and married my mother.
Dad spent the next decade travelling around Queensland
working on power plants,
shipyards and other areas
requiring the services of a boilermaker welder.
He moved his family back to NZ in 1962
and continued working in the industry until 1973
when it became obvious that the industrial deafness
he suffered would take his hearing all together
and he left boilermaking
and became a porter at Kaitaia Hospital
where he worked until he retired.

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Dad had no idea of the implications of asbestos exposure.
Looking back after he got ill it was obvious
that he had pleural plaques in his left pleura for many years,
they were noted in all his xrays but dismissed as of no importance.
The first actual symptom of his disease
was a large pleural effusion in Jan 2011
that came on suddenly making him think he had pneumonia.
He attended A and E and the effusion was drained
twice with lots of dragging on a syringe,
all in all a thoroughly unpleasant way
to drain three litres of fluid.
I contacted Mr Brandon Wong
a General medicine Physician in Whangarei
who performed tests and biopsies on Dad.
By Feb 2011 dad was diagnosed with mesothelioma.

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Dad was 82 years old and soon to be 83.
He had a history of a heart attack
and well controlled heart failure.
After a good discussion dad decided a heart attack
would be a better way to go than mesothelioma,
so he stopped all of his routine medications.
This helped him in some ways
as his pleural effusions could be drained
without worrying about his Warfarin.
The reality was Dad at his age and state of health
was considered to have a low performance status
in the medical world.
In our world however
he was the much loved father of five,
father in law of five,
grandfather of seventeen
and great grandfather of ten.
.We did not care much about the medical stats
and fortunately for us
Brandon was willing to support us
with whatever we wanted to do.
Dad was given a talc pleurodesis in Auckland
that unfortunately failed

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So we set about doing our own research.
The first thing to come to my attention
was paw paw cell reg
a tablet made from pawpaw bark
www.pawpawresearch.com
explains the effect of acetogenins in the tablets
on the mitochondria of cancer cells.
We sourced the tablets on line from Natures sunshine
and dad took the highest dose from day one.
We did have to pull the capsules apart
and sprinkle it in his drinks
as he had trouble swallowing them.
The most visible and instant effect
of the paw paw was our ability
to keep dads weight up.
As the cancer cells were starved of energy
dad's regular cells were able
to use the food he was eating.

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We made enquiries with a law firm
in Australia handling no fault asbestos claims
due to dads Australian work history.
They were simply amazing
and within six weeks of an enquiry with them
dad was compensated by the Australian Government.
This was to be an incredibly important payment for him,
as it meant he could be looked after until the end.
Money being no object.
He also bought himself a mobility scooter
so he could keep zooming around his property
with his dogs.
He was however still made miserable by the pleural effusions.
Brandon had an excellent technique for draining them
using a Bonanno catheter
(usually designed for suprapubic urine drainage).
The bonnano catheter is inserted
and a urine bag attached
whereupon the effusion drains freely
over the course of an hour or two.
Far kinder than the syringe technique.
The downside to this was
dad was stuck full of fluid for weeks
until Brandon came to the area to drain him.
When it became clear that the effusions
were developing more rapidly
we turned to more research.

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The gold standard in the western world
for palliative care for mesothelioma management
of pleural effusion is a PLEURX catheter.
There are many many studies in all the thoracic journals
on the use of these indwelling catheters.
This incredibly was not available in NZ.
Brandon however was willing to use one for dad
so we contacted care fusion Australia
and I am now proud to say they are available to purchase in NZ
if you can persuade your surgeon to try one.
Unfortunately they are not subsidised by the government
but may possibly be paid for by insurance
as they are certainly covered in insurance policies in other countries.

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The catheter kit itself costs $1500
and the bottles for drainage around $90 each
PLEURX catheters are a long term indwelling device.
They are tunneled under the skin
and remain permanently in the pleural space.
They have a one way valve system
so nothing can be introduced into them
and they are simple for a patient
and their family to maintain at home.
They literally are curled up under a little dressing
and other than the 1st week
when the bruising from the swelling
under the skin was present
it was completely painless.

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Risks to the procedure are much the same as the the drainages
but these can be explained by your physician.
The system comes with sterile drainage bottles
which are attached to the tube,
they have a suction which you activate
and hey presto the fluid is drained
without stepping near a hospital or doctors surgery.
A new sterile dressing is then placed
over the tube until next time.
Dad was a new man.
He walked, he rode his scooter,
he played with his great grandchildren
and he held court and talked!!
He had the most wonderful Christmas.
Every time he felt fluid build up in his chest
we applied a drainage bottle
and he was immediately relieved.
A year went by from dads diagnosis
and he looked great much to everyone's astonishment.
The family joke was that
he was a bit of a possum playing up to us all.
Sadly though,
it was his heart that was to be his undoing.

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He developed an infection in his tooth in March
that promptly turned into heart failure
that was irretrievable.
Dad decided to let nature take its course.
He required morphine for the breathlessness
that came from his heart.
We were reluctant to do this
as morphine has been shown by reputable
studies to work in reverse
of the way paw paw does and feed tumours.
But it was necessary at that stage.
We stopped dad's pawpaw at the end of march
and within weeks he had visible tumours
all over his left chest wall.
They literally grew like mushrooms before our eyes.

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Dad fought on for quite a few weeks.
The compensation from Australia
meant he could afford the drainage bottles
for the pleurx and meant my family
could take turns flying home
to give him round the clock care.
The pleurx could not help with the breathlessness
from his heart but certainly meant
that the dying process was more bearable
as he did not have the double whammy
of his chest as well.
We are sad at our loss
but comforted by the fact he was pain free
and died in his own bedroom
looking out over his lake view
as he was determined to.
I am happy to answer any questions about
PAWPAW Bannano catheters
Australian asbestos compensation
or PLEURX drainage systems.
I am not a doctor.
These are our discoveries
and experiences battling mesothelioma
with dad
and I hope it may be of assistance
to someone else even if it just
points you in the direction of the
questions to ask
Regards Tania Currie

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On to Neroli's Story .

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