Wellington Region Kidney Society
March 2009
IT’S 2009!!
Welcome to the first edition for 2009.
We hope you all had a safe and
peaceful break over the holiday
period.
VALENTINE’S DAY GET-TOGETHER
This was held on Saturday 14th February, and after days of
rain and miserable weather, the sun came out and
provided us with a glorious day. We had a great turnout,
and it was wonderful to see, and meet, so many new
faces! Thank you to all of those who joined us, and thank
you to Michael and Paula for hosting.
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OPEN DAY AT THE NEW RENAL UNIT
The new Renal Unit of the hospital will be in operation soon. All in-centre and satellite
dialysis patients will have received some information about this, but mark your diaries
for an Open Day on Friday 20th March, from 1.30 – 4pm.
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HELLO AND GOODBYE…..
A warm welcome to our new renal social
worker, Amber Campbell, and our new renal
dietitian, Eirean Kiely. Many thanks to both
Eileen Carter and Olwyn King who filled these
demanding roles previously. Eirean Kiely
kindly came to our February committee meeting and explained how
she is defining her role. She mentioned that her top priority is for patients on dialysis
who can expect regular follow up. Eirean plans to give us an item for the next
newsletter, where she can explain all her goals for the dietitian role. In the meantime if
you have pressing questions try her email; [email protected]
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LETTER FROM THE PRESIDENT
Welcome to 2009!
We kicked off 2009 with our Valentine’s Day BBQ, which doubled as a Special General Meeting for
the Society, to change our constitution so that we are fully compliant with the requirements of the
Charities Commission. I’d like to thank everybody who came to the BBQ – it was good to see so
many new faces and meet a greater number of our members. There was a lot of conversation –
people telling their stories to others, and getting some tips and support along the way. I certainly
learnt more about various aspects of renal disease during the day, and was impressed by the spirit of
you all in facing what is, after all, a very challenging disease.
Challenging seems to be the buzz word for 2009. The economic times are challenging, credit is
harder to come by, income is down and people are losing their jobs. I hope the recession is not
affecting you too badly at the moment.
It will be affecting the Society – in the form of reduced income. Over the past few years our main
income source has been an annual grant from the Kidney Health New Zealand (KHNZ - previously
the Kidney Foundation). We have been extremely fortunate in having the KHNZ grant, and I would
like to acknowledge the financial support they have been giving us. However KHNZ have indicated
that their income levels are down, and they will need to cut back on their annual grant to us. The final
impact is not yet known – KHNZ are doing their own budgeting exercise for the year – but we can
expect that in a year’s time, the KHNZ grant could be no more than half what it is now.
Our second largest source of income over the past few years has been interest income. Our
Treasurer, Ted Fecteau, has been doing a fantastic job in securing the best interest rates on our
savings – but a year ago interest rates were over 8% whereas deposit interest rates in 2009 are likely
to be about 4%.
This will be no news to many of you, who are living off fixed incomes and the interest on your
accumulated savings.
Sometimes, I hear criticism of the amount of money that WRKS has in the bank – which is currently
over $175,000. But it is a reality that organisations such as ourselves live off interest income and ongoing fundraising activity. In the short term, the Society could keep going by running down the level of
savings in the bank – but then what? The Committee do not want to jeopardise the future of the
Society in this way. So we are going to have to generate new income sources and develop new
approaches to fund-raising.
I can assure you that in the challenging times ahead, we will have three underlying principles in mind.
First – we want to make sure the services we provide to renal patients and their families do not
diminish. Second, that we will use the feedback we have had from you – through your feedback in the
survey results - to deliver more focused forms of support for patients and their families. Third – we
want to ensure the financial sustainability of WRKS as a “going concern”.
We will keep you posted.
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KIDNEY HEALTH WEEK - 9th-15th March
(incorporating National Just Water Week and World Kidney Day, 12th March)
Kidney Health NZ has many events planned for Kidney Health Week, which
incorporates both World Kidney Day and National Just Water Week.
World Kidney Day is on Thursday 12th March, and is celebrated in more than 100
countries on 6 continents. This year, the message is "Keep the pressure down", with
the campaign highlighting the importance of high blood pressure as one of the
key symptoms and causes of Chronic Kidney Disease (CKD).
High blood pressure is an important risk factor in chronic kidney disease, and needs to
be carefully monitored. When people suffer from high blood pressure it puts more
stress on blood vessels throughout the body, including the kidneys. When this
happens kidneys cannot filter wastes from the blood properly. Achieving the
recommended blood pressure goals can reduce the risk of needing dialysis or
experiencing a heart attack or stroke. For more information on high blood pressure,
and the importance of treating it, go to
www.worldkidneyday.org/pages/high.php
National Just Water Week promotes water as the drink of choice in the fight against
obesity, which is one of the biggest risk factors in developing diabetes. Schools around
NZ will be sent activity and information packs during February.
There are several other activities planned for the week around the country to raise
awareness of Kidney Disease. Lion Nathan has agreed to have all their staff in
Auckland, Wellington, Christchurch and Dunedin screened for early signs of Kidney
Disease. Once again, Kidney Health NZ hopes to visit Parliament and screen all the
new MPs. With a simple urine and blood pressure test, signs of kidney disease can be
detected, and with more effective treatment available, we can slow down the
progression of kidney disease.
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COFFEE MORNING IN RICHMOND
One of our members, Angela Murton, has recently moved to Richmond in the South
Island, and is keen to start up a coffee group for other renal
patients. She has proposed meeting at her house on Saturday
21st March at 10.30am. She is flexible about the time and date
though, so if you are interested, but the date/time don’t suit you,
please give her a ring, and she will be happy to change it.
Please also call if you’re planning to attend, so she has an idea
of numbers. Her phone number is (03) 544 1818, and her email
address is [email protected]
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CREEKFEST – Saturday March 21st
The annual Creekfest is once again being hosted at Cannons Creek Park on Saturday
21st March 2009. Now in its sixth year, this Health & Cultural
festival attracts in excess of 20,000 festival go-er’s who
gather to enjoy and participate in a wide range of events
and activities promoting healthy lifestyles and to celebrate
the cultural diversity that is Cannons Creek.
There will be a variety of food, crafts, plants and clothing
stalls, as well as plenty of performances and activities to
keep the whole family happy. If you would like more
information, please contact Sandra Moe-Matthews on
238 4754, or by email: [email protected].
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CHANGES TO CONSTITUTION
At the Special General Meeting (held in conjunction with the Valentine’s Day BBQ),
the changes needed to comply with Charities Commission requirements were
proposed and voted on. 19 people were present, and they voted unanimously to
accept the proposed changes, which are as follows (in italics):
The control and investment of the funds of the Society shall, subject to the directions
of the Society in General Meeting, be in the hands of the Committee, with the
following provisos:
(a) any income, benefit or advantage received shall be used to advance the
charitable purposes of the Society.
(b) no member of the Society, or anyone associated with a member, shall take part
in, or influence any decision made by the Society in respect of payments to, or
on behalf of, the member or associated person.
(c) any payments made to a member of the Society, or anyone associated with a
member, must be for goods and services that advance the Society’s charitable
purposes. These payments must furthermore be reasonable and relative to the
open-market value.
If you want to see the full version of the Constitution, please contact Sandra
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MINISTRY OF HEALTH TRAVEL ASSISTANCE
The criteria for claiming Travel Assistance are in the process of
changing, and it is likely that more people may become eligible for
assistance. However, this won't be finalised for a few more months,
so keep checking with the Social Worker, or watch the Ministry of
Health website (www.moh.govt.nz/travelassistance)
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WELL DONE RENAL STAFF!!
Just before Christmas last year, Wellington Hospital completed its
busiest week ever for renal transplants – with 7 patients receiving a
kidney in the space of just 6 days! The week included a single 24
hour period where 4 patients received kidneys.
Dr Grant Pidgeon, Clinical Leader of Renal Services, says in recent years Wellington
Hospital has done between 16 and 25 renal transplants a year.
"Clearly doing 7 transplants in a week is exceptional, and that has enabled us to bring
the total number of patients who have receiving renal transplants thus far in 2008 to
34," Dr Pidgeon says.
The Chief Executive of Capital & Coast DHB, Ken Whelan, says departments and
services across the hospital worked together phenomenally well to enable the four
transplants to occur in one day. “Renal Services pulled it all together, with huge
amounts of input from surgeons, anaesthetists, theatre staff, peri-operative staff
radiographers, laboratory staff, ward nursing and medical staff and many others.
“The fact we had surgeons operating until 3 o’clock in the morning to complete the
fourth transplant in that 24 hour period shows the level of dedication and expertise on
display. I’m enormously proud of the work our teams did,” Mr Whelan says. “Working
together produced a spectacular result”.
Grant Pidgeon says the main factor limiting the number of renal transplants which can
be performed is the availability of donor organs. “In the past most transplants were
deceased donor transplants,” Dr Pidgeon says, “but donor rates in New Zealand have
fallen to very low levels. These days most of our transplants are from living donors but
sadly many of our patients on the waiting list have no suitable live donor.”
“Of course in each case where a deceased donor is involved there is a family which
has suffered the loss of a loved one, and we do feel profoundly for them. We hope
they can take a small measure of comfort in the fact the organs they have agreed to
donate can make a profound difference for those who receive them – giving the
recipients a new lease of life, and in many cases decades of productive life which they
might otherwise not have experienced.
“You can see how important this gift is from the way our team and this hospital moved
heaven and earth in the last week to make use of every available kidney. We did
everything we could to ensure that we could accept all the kidneys which were offered
for our patients.”
“My hope is that more people give serious consideration to being an organ donor and
make sure they discuss this with their families,” Dr Pidgeon says.
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AND IN THE UK…..DONORS UP BUT ORGANS STILL SHORT
(For full article, go to http://news.bbc.co.uk/2/hi/health/7842331.stm)
The number of people on the organ donor register in the UK has hit a record 16 million,
meeting a government target of doubling 2001's numbers a year early. However, the
gap between supply and demand for organs is still growing.
The NHS figures show people in Scotland and the south-west of England are the most
willing to become donors. It is thought the debate on presumed consent may have
boosted numbers.
The idea of introducing presumed consent, under which people would be placed on the
organ donor register automatically unless they "opted out", was rejected last year by a
panel of experts appointed by the government. They said such a move was unlikely to
increase donor numbers and posed a significant risk of eroding patient trust.
Instead, a £4.5m public awareness campaign is to be launched in England aimed at
boosting voluntary donor numbers. More than one in four people in the UK are now on
the donor register.
But, despite the rise in numbers, the UK still has one of the lowest organ donation
rates in Europe.
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MEMBERSHIP SURVEY
Many thanks to those who have already given us their input. We are still in the
process of contacting as many members as possible, although issues of time and cost
have led us to focus on the local calls with those further afield having to wait even
longer. So if you have not yet been contacted, and are interested in having your say,
please do let us know. If you would prefer, we can post you a survey to complete.
Thank you to those who have already given their time to talk to us. It has been a real
pleasure talking to you and lots of valuable ideas have been recorded.
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SUBSCRIPTIONS
As mentioned in the last newsletter, we are trying to simplify our membership system,
so our membership subscriptions will now run with the calendar year, with subs due in
January. A big thank you to every one who has sent in their subs.
If this circle ‫ ۝‬is coloured in, your membership is overdue.
Annual membership is still only $10 a year for an individual membership, and $15 for a
family membership.
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REFLECTIONS ON A 'LONG' STAY ON WARD 40.
Rob Cameron
OK, let's be honest here, for most renal patients Ward 40
(as it is now, no idea what it will be called in the new
hospital) is our home away from home. It's where we end
up when we're not at home! In 2008 I spent 5 weeks there!
Way too long really, but essential given I'd broken a
vertebrae and the associated pain meant I couldn't dialyse
home.
at
On the up side it gave me a chance to think a lot about what was good about the
experience and what wasn't so good.
On the good side are the staff - an amazing bunch of dedicated people there to make
our lives better (even if some of us don't at times think so). We all live with lots of blood
tests and weighing but before 8am! I need my beauty sleep!
Two staff merit special attention – social worker Eileen Carter and ‘head’ nurse Toni
Richardson. Just as I felt I was about to fall into the gulf between the Ministry of Health
and ACC these two appeared and in a radical move stopped offering problems and
started offering solutions (real solutions that work!). As the ‘patient’ I finally found hope
returning and the prospect of a life outside Ward 40 a reality. My deepest and most
sincere thanks to the two of them – they were just amazing!
On the not so good side was the late arrival of the phosphate binders - often too long
after a meal to be effective!
The improved magazine supply (they're round by the waiting area for the clinics if you
can't find them was fantastic. Actually being able to read Time magazines that were
about news NOW and not a couple of years ago are a revelation!
However, the lighting around the beds sucks - making the reading of anything harder.
A better arrangement for a reading light (brighter and adjustable for the patient would
be an improvement). Also the 'air conditioning' system seems at best 'flawed'. I spent a
lot of time being either too hot or too cold. There were some fans available but these
were likely to disappear if you went to the dialysis unit. More would be great.
I find the dialysis unit too noisy for my liking and the TVs more an irritant than a help.
Often you're at the mercy of the first person in (who picks the channel). It gets worse if
they've brought their kids (you get to watch cartoons!). I think we need to consider the
arrangement used at HVDHB. There, each location has its own small screen TV on an
'arm' so it can be quickly and easily moved aside if necessary.
Do you have a story that you want to share? Call or email us and we’ll put in the next newsletter!
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CLYDE INDEPENDENT HOLIDAY DIALYSIS FACILITY
Looking for another holiday option? How about Clyde in the South Island? Clyde is
situated just off the main highway near Alexandra, approximately one hour’s drive from
both Queenstown and Wanaka.
The unit is situated in the grounds of Dunstan Hospital in Clyde, and a key to access
the unit can be obtained from the main reception area of the hospital Mondays to
Fridays between the hours of 8am – 5pm. Outside of these hours and on public
holidays, the key can be obtained from staff in the general ward.
PLEASE NOTE: There are NO nursing staff in attendance.
This facility is a self-care unit and is only available for patients who are able to manage
their dialysis treatments totally independently, or with the assistance of a family
member/friend, and are familiar with a Fresenius 4008B machine.
They would require a letter from your primary nurse at your home training unit to verify
this prior to confirmation of booking. He/she will also need to supply information
regarding your treatment requirements and documentation of the results of the
following:
MRSA swabs
(required to be done 2 weeks prior to visit)
VRE
(required to be done 2 weeks prior to visit)
Hep B, Hep C, HIV serology (required to be done within 3/12 of visit)
Staff at Dunstan Hospital are NOT responsible for the unit and are not trained to
provide assistance with dialysis or for any dialysis related problems. They also do not
have an emergency department. Advice/assistance for dialysis problems must be
obtained from nursing staff at the Dialysis Unit at Dunedin Hospital and information
regarding how to contact them is clearly displayed in the unit. Holiday visitors must
have access to a mobile phone as there is no phone provided.
The unit has two Fresenius 4008B machines and can accommodate 2 visitors at a
time but it is advisable to book well in advance. Most dialysis equipment is supplied
but information on anything you need to bring with you will be advised.
The unit has a heat pump and radiators for the winter months but is generally very
warm in summer. There is a small kitchen with a fridge, electric jug, toaster and
microwave. No food or beverages are supplied.
If you require any further information or to make a booking please contact the Dialysis
Unit. We look forward to hearing from you.
Dialysis Unit
Dunedin Hospital
Ph. 03 470 9345
Fax. 03 470 9508
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DIALYSIS MACHINE PIONEER DIES
Dr. Willem Johan Kolff, the former University of Utah medical pioneer who invented
kidney dialysis and helped design the first artificial heart to be used in a human, died in
late February 2009. He was 97.
Known in medical circles as "the father of artificial organs," the scope of Dr. Kolff's
medical accomplishments included rigging the prototype for what would become the
world's first kidney dialysis machine from sausage casings and an automobile water
pump part as a young doctor in the Nazi-occupied Netherlands during World War II.
His work eventually grew in scope and size to include bits of the artificial heart, artificial
sight, artificial kidneys and placentas, and the wearable artificial lung.
Born Feb. 14, 1911, in The Netherlands, Dr. Kolff moved with his wife, Janke, and their
five children to the United States in 1950. He became a U.S. citizen in 1956. He
earned an M.D. at the University of Leyden Medical School in Holland, a Ph.D.
(summa cum laude) at the University of Groningen, Holland, and received several honorary medical degrees.
As a young man, Dr. Kolff worked with his hands as a carpenter on weekends, finding
solutions to challenges that would provide the foundation for his future work with mechanical devices.
Dr. Kolff began work on the artificial kidney in 1939, developing the rotating drum kidney in 1941, which led to the 1955 twin-coil kidney, providing the possibility of the first
dialysis for kidney patients worldwide.
He began work on heart-lung machines in 1948, and the first membrane oxygenators
were used successfully in patients in 1955.
Dr. Kolff's first work on the artificial heart began in 1957 at the Cleveland Clinic in Ohio.
In 1967, he became head of the division of artificial organs at the University of Utah
and director of the Institute of Biomedical Engineering.
Dr. Kolff once told a reporter his mind rarely took a rest from the mechanics of medicaldevice designs and how they could save or improve lives. "I nearly always do
something. I can't bear to just lie in the sun. It would drive me crazy," he said.
Dr. Donald Olsen, a former colleague and director of the Utah Artificial Heart Institute,
said Dr. Kolff's work influenced most of those working today in artificial organs research.
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"They either worked at some time in his lab, or he worked with them on site," Olsen
said. "His influence continues to be recognized worldwide. ... His legacy is gigantic
when you consider all the contributions that he has made to medicine and biomedical
engineering. His list of inventions that have been used clinically in patients is very
lengthy."
Dr. Kolff published numerous books, more than 600 papers and articles, was inducted
into the Inventors' Hall of Fame in 1985 and received hundreds of awards during his
lifetime. In 1990, Life Magazine named him one of the 100 most important Americans
of the 20th century.
In September 2002, Dr. Kolff received the Albert Lasker Award for Clinical Medical Research (considered to be the highest honor in American medicine) for his development
of kidney dialysis. The nominating committee noted the invention "changed kidney failure from a fatal to a treatable disease, prolonging the useful lives of millions of patients."
"The glass is still half full," Jack Kolff said of his father in spring 2008. "That is his
attitude." Dr. Kolff is survived by his 5 children, 12 grandchildren and 6 greatgrandchildren.
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AUTUMN BREAK?
If you have been wanting to take a break from the daily grind in and around Wellington,
don’t forget the WRKS holiday home in Taupo. We were fully booked over the holiday
period and received many compliments about the experience. However it would be
great to see full occupancy over more of the year – and easier to pay the bills! The
holiday house has a dialysis unit in one bedroom and is ready for anyone used to
home dialysis (but the house is available to anyone who wants a break). Many people
use it if they are travelling around the country. It is ideal for a family, or group, as the
three bedrooms hold one queen and 2 single beds, 4 bunks and plenty of floor space.
The Taupo hospital is very friendly to those on CAPD. If one person is a WRKS
member, then the house only costs $60 per night for the group. If you share the nightly
rental between the 8 beds you'll be paying less than $10 a night per head.
Getting there, most people go by private car it is 369 Km away about 4.75 hours of
driving. You can also get there by bus - from Porirua, Johnsonville or Wellington for
example. Porirua's i site quoted fares from $36 one way for the early bird fare
raising to $72 one way; only a little more from the Wellington or Johnsonville stops.
There are lots of attractions in Taupo; walking to the Huka falls is free and if you are
full of cash and adrenalin you can do a bungy jump en route!
The house has a table tennis table (bring bats and balls), a BBQ, a television and
DVD or you could garden to your hearts content!
For more information or reservations, contact: Alan and Margaret Griffith at
04 9049884 or [email protected]
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WRKS COMMITTEE MEMBERS 2009
Michael Papesch President)
389 5953
Ted Fecteau (Treasurer)
934 6330
Dave Henderson
972 7708
Rob Cameron (Membership Secretary)
586 3640
Mike Logan
388 8381
Arthur Sanford
479 0630
Alan & Margaret Griffith (Taupo bookings)
904 9884
Sandra Lallemand (Patient Liaison Officier)
382 9693
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Our thanks
go to….
Jeff Orr
of Copy Express in Petone,
who kindly sponsors our
newsletters,
the Community Organisation
Grants Scheme (COGS) which
is run by the Department of
Internal Affairs,
and NZ Post, which provides us with postagepaid envelopes.
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