March 2010

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					 Wellington Region Kidney Society                                       March 2010

                               AUTUMN EDITION
                             It seems like summer
                          barely got under way, but
                          here we are, heading into

The focus of the fifth World Kidney Day was on
diabetes, the commonest cause of kidney
failure. This international event, marked in more
than 100 countries, aimed to raise awareness
about the link between diabetes and kidney
disease, as well as the need for early screening
and treatment to reduce the risk of kidney
About 40% of people with diabetes will develop
chronic kidney disease (CKD) which also
increases the risk of cardiovascular disease
and other complications of diabetes.
Professor Lynn, Medical Director of Kidney
Health New Zealand notes that “Maori and
Pacific people with diabetes have an increased
risk of getting chronic kidney disease and that
one in three people on dialysis are Maori and
one in five a Pacific person.”
Early detection and treatment of CKD in people
with diabetes is very important as it slows or halts the progression of patients to kidney
failure. Kidney damage from diabetes can be reduced or even prevented if detected
early. A simple test of urine and blood, and a blood pressure check can reassure or
detect if there are any early signs of kidney problems. A blood sugar check for
diabetes can be done on a finger prick blood sample, and Dr Lynn says,”It is important
for people with diabetes to have regular tests to check their kidneys.”

To highlight how easy it is to screen for kidney disease and diabetes, Kidney Health
New Zealand, with the help of kidney nurses and doctors from Wellington Hospital and
the local Diabetes Society, offered blood pressure checks, urine protein checks and
blood sugar tests for Members of Parliament and their staff at Parliament Buildings on
the 16th March.

Dr Lynn says, “Good blood pressure and blood sugar control for people with diabetes
are the best ways to reduce the risk of kidney damage. Lifestyle changes such as
losing weight, exercising, stopping smoking, eating less salt and drinking less alcohol
are also important.”

WRKS wanted to use World Kidney Day as a platform to increase the Wellington
public’s awareness of kidney disease. This we did, with the help of some volunteers…
  • Bernadette Hanify and some of her Year 6,7 and 8 pupils from St Michael’s
    school in Taita spent the day handing out information in the Queensgate-
    Westfield plaza in Lower Hutt;

  • Wayne Bedford (Train Manager at Kiwi Rail/Tranz Metro) arranged for us to have
    posters displayed on all the trains (some of you have mentioned seeing them),
  • we also had assistance from some great volunteers who distributed posters and
    pamphlets in various locations around the city – thank you to Eileen McGlinchy,
    Robin and Kathy Howarth, Tania Psathas, Alan and Margaret Griffith, Paula
    Barkley, Roberta McBryde, Penny Gurr and from further afield Christine Drysdale
    in Masterton, and Margaret Cooper in Richmond.

In May 2008 the Central Region Renal Network (CRRN) was established to progress
identified priorities for the delivery of renal services in the lower half of the North
Island, and the top of the South Island. One of those priorities was a project to identify
practical actions to improve the level of support for renal patients and their families.
As a member of the CRRN, I was involved in helping to pull this study together.

The project looked at the practical day-to-day issues faced by renal patients, and what
supports are currently provided by (or through) DHBs in the central region to address
these issues.

One key finding from the study is that the level and type of information available for
patients and their families was highly inconsistent across the region. Inconsistencies
were found across all aspects of managing renal disease, but they were most
pronounced for information about non-clinical supports (that is, information about
Government and non-Government income support and other social services for renal
patients). At one stage, the study notes:

“ … [responses from] DHBs indicated that there was no generic or standard
information for renal patients and families about non-clinical support … From the
responses given, this type of information appeared ad hoc and depended on Renal
Unit staff. However, given the limits of DHB staff to have an overview of all non-
clinical supports available … it is doubtful whether any renal patient in the Central
Region is given comprehensive (and consistent) information about non-clinical
supports available.”

The CRRN is now looking at options for addressing this gap. I also raised these
issues at the National Renal Advisory Board’s meeting just a few weeks ago. The
Board – which was established by senior clinicians in the early 1990s to address
significant issues in renal service provision requiring a consistent national approach -
supported moves to address the gaps identified by the study. I expect to be able to
report on what actions have come out of the study within the next few months.

The CRRN has also agreed to more in-depth work at other issues faced by renal
patients, starting with a stock-take of the transport issues faced by renal patients in the
central region. This work will continue throughout 2010.

Finally, I would like to thank those volunteers who helped hand out leaflets during
World Kidney Day on 11 March. It’s important that we continue to raise awareness of
kidney issues and it was great to see members volunteering to help us do that. And
the posters on the suburban trains were great!

Michael Papesch
President WRKS

Do you have friends or family in Fiji that you would like to visit, or do you just fancy a
relaxing holiday in the Islands? We
have some information from the Kidney
Foundation of Fiji that will help you with
the necessary arrangements for
dialysing while you are there. This
includes the relevant application forms,
as well as the prices for each holiday
haemodialysis session. If you would
like to be sent further information so you
can start planning your visit, please contact Sandra.

After 2 unsuccessful attempts to hold this event, we finally got a
sunny day!

The miniature train was running, the children were playing, and
some people (no names mentioned…..ok, it was Robin) were
dunking their kids under the tap…..

Thanks to The Mad Butcher in Porirua for providing a huge array of meat, and to
Kathy Howarth and various other members for a delicious selection of salads.

A recent article in The Dominion Post (March 15th, 2010) highlights an interesting
experiment in Israel: “Sign a donor card, and you and your family move up in line for a
transplant if one is needed”.

This new law is the first of its kind in the world, and international medical authorities
hope it will boost organ supply. There has been some initial resistance from Israel’s
ultra-Orthodox Jewish minority whose religious convictions forbid organ donation.

However, Dr Jacob Lavee (Sheba Medical Centre in Israel)
believes that its implementation will “rectify the unfairness of
the situation where people who are unwilling to donate wait in
the same line as those who are willing”.

1. AGM
This has been set for Sunday 16th May. The venue is

Margaret Stewart House (Hospital Road, Newtown).

Everyone is welcome, and it will run from 2-4pm.


Every year, members of the Committee travel up to Taupo to do some gardening and

general maintenance on the house. This year, the Working Bee weekend has been

set for the 18th-20th June. If you are available to help out, we are always looking for

extra volunteers. Some accommodation is available at the house.


These continue to be held at 2pm on the second Sunday of each month, and the

schedule for the next 3 months is as follows:

Sunday 11th April – McCafe in Newtown (190 Riddiford Street)

Sunday 9th May – McCafe in Lower Hutt (338 High Street)

Sunday 13th May – Café Trends in Greytown

                       The first-ever Wairarapa coffee group was held in Greytown on

                       the 14th February, and there was a great turnout from the

                       locals, so this will now be a regular event.

In a world first, University of Otago researchers have developed a simple urine test to
detect whether transplanted kidneys are failing. Once it has been fully tested and
produced commercially, the test could enable transplant recipients to check their own
kidney function daily at home, eliminating the need for expensive and invasive kidney

After seven years of work, scientists devised a test to identify a molecule called major
histocompatibility complex (MHC) - molecules produced in the urine of transplant
recipients whose new kidney was failing, study co-ordinator Dr Alex McLellan, of the
university's department of microbiology and immunology, said yesterday.

A study analysing urine samples from 103 recipients from New Zealand, Australia and
Switzerland showed patients with the MHC molecule in their urine had a 90 per cent
chance of their kidney failing, he said. The test, which would cost "a few cents" to
carry out, would enable recipients and doctors to discover quickly if a kidney was
failing and give extra immunosuppressive drugs to counter that.

The findings were published this month in the international journal Transplantation.

Dr McLellan said he expected it would be another five to 10 years before kits were
available. "We are hoping the next round of trials will involve more than 1000 people,
probably in the US". The university was also seeking a company which would assist
with producing test kits.

The Otago research was internationally significant, Kidney Health New Zealand
medical director Professor Kelvin Lynn said yesterday. "Kidney transplants are the
best and most cost-effective method of treating chronic kidney disease, so anything
which can be done to improve the outcome for recipients is good news," Professor
Lynn said.

In New Zealand, kidney biopsies cost $1000-$2000 each and were stressful on
patients who had been through years of dialysis and a transplant, he said.


* Regarded as the best and most cost-effective treatment for treating chronic kidney
* More than 500 New Zealanders are awaiting transplants.

* 122 people received new kidneys in 2008, 53 from deceased donors and 69 from
live donors.

(Reproduced by kind permission of The Dominion Post – January 5th 2010)

For nearly a decade, Brian Fearn was hooked
up to a dialysis machine for eight hours at a
time, three times a week. A gift of a kidney
changed that. Greer McDonald reports on his
life one year on.

Brian Fearn tries not to think too much about the
person whose kidney is the reason his life is so
much better. ‘‘But I do think about the person
and where they came from. . .’’ the 47-year-old

A call to his Upper Hutt home at 12.30am on a          Full of life: A year after Brian
day in early December 2008 changed his life            Fearn’s kidney transplant, the Upper
                                                       Hutt man is back at work, spending
when he heard the words he’d been waiting nine         time with family and persuading his
                                                       friends to become organ donors.
years for: ‘‘We’ve got a kidney for you.’’

Just months later he was back on his feet, at his job at Bunnings in February and
spending time with his family again. ‘‘It’s taken a wee while to recover. But there’s no
dialysis at all so it’s really good. I’ve got more time on my hands.’’

Mr Fearn was just 17, an apprentice plasterer, when an infection destroyed his
kidneys. After three years on dialysis, he got his first transplant in 1986. Thirteen years
ago, that kidney failed. That meant Mr Fearn was tethered to his home – hooked up to
a dialysis machine for eight hours at a time, three sessions a week, to remove toxins
from his blood. He also had to monitor his diet, with mineral-rich foods – such as many
fruit and vegetables – off the menu. But now they’re back, just in time for a summer

‘‘Bananas, avocados, tomatoes . . . oh yeah [eating them]. It’s all standard now,’’ he
said. ‘‘It’s just a big balancing act.’’ Also a balancing act is how he deals with
discussing organ donation. ‘‘All my family and friends are donors now,’’ he says. ‘‘It’s
hard, very much so. You’re really relying on someone else losing someone.’’ He said
the impact on his life had been huge. ‘‘[Organ donation] gets people back into the
workforce. Nothing will top this.’’

      Who can donate? Very few medical conditions prevent a person from being able
      to donate. If you have severe asthma, for example, you may not be able to
      donate lungs but may be able to donate heart, liver, kidneys or eyes.

      How do you become a donor? In New Zealand people can register their wish to
      be a donor when they apply for their driver’s licence and subsequent renewals.
      This information is recorded on the licence with the word ‘‘donor’’ and in the
      Land Transport New Zealand database. You also need to tell your family your
      wishes, and let them know which organs and tissues you are willing to donate.

      What can be donated? Organs that can be donated for transplant include the
      kidneys, liver, heart, lungs and pancreas. Tissue that can be donated includes
      eyes for corneal donation, heart valves and skin.

We are pleased to announce that our Befrienders’ Scheme is ready to be launched.
We are planning an initial briefing for all volunteers on Sunday 18th April.

This will commence with afternoon tea at around 2.30pm, and the briefing should take
around 2-2 ½ hours.

We will endeavour to finalise the session ASAP, and we will be in touch shortly to
confirm all details with you. If you haven’t heard from us, and you are keen to be
involved, please let us know.

Being an ‘empowered patient’ means taking an active role in your health care. Your
actions needn’t be out of the ordinary; even small actions can make the difference
between a good or not so good health care experience.

6 tips to becoming an empowered patient:

1-   Ask a ton of questions.

There’s no such thing as a ‘stupid question’ firstly. If you don’t understand something
that your doctor or nurse has said ask for it to be clarified. Keep asking till you
understand what’s being told to you about your health.

As you know, doctors can be a bit rushed. For you to make best use of the time you
have with your health professional be prepared with your written questions before you
see your doctor. This will save time for both you and him/her.

Schedule enough time for your questions to be answered. Request an extended
session if you need one. Most professionals will cater to your needs as long as they
know in advance that you need more time.

Make sure you discuss what’s top of your priority list first- get the important
issues/questions out of the way first otherwise you may find that you won’t have time
for these by the end of your session.

Be prepared, psychologically, for the answers to your questions. If your visit involves
something potentially serious about your health and then you’re told what you need to
do about it, chances are you won’t actually remember all that was said after your
session. This is due to the increased anxiety, fear, disbelief and denial that you are
faced with. It takes a while to process all that was said and really appreciate what’s
going on for you. Take a trusted support person with you- a second set of ears can be
invaluable and they can support you if you don’t hear what you expect. Or maybe
even a tape recorder to record the session – make sure though that you ask the
doctor/nurses permission to do this first.

2-   Get a second opinion if you can.

This is something we don’t do particularly well in New Zealand. For added
reassurance, ask for another doctor to see and interpret your results. The more
information you have the more self-empowered you become.

3-   Use the internet wisely

It is common practice to use the internet to find out information about your health
issue. However, not everything we find on the internet is based on fact. Remember
that anyone can put up a health-related site!

The internet is a great resource for valuable information. It is recommended though
that you check the URL (website address) to make sure they have ‘org’, ‘govt’ (gov) or
‘edu’ at the end of the address. These sites generally provide credible information.
You may also want to read up on the latest research or medical literature or have
someone you know interpret these as they will provide more information and up to
date developments about your condition and treatments for it.

If you find something interesting, take it with you when you next see your doctor and
discuss it. Ask him/her to suggest any articles or websites that may provide you with
more information.

4-   Understand your blood/test results

Go through your results regularly with your doctor/nurse until you understand what the
numbers mean; what your normal range is and what changes you need to watch for.
The more you understand about your blood work for example, the more proactive you
can be about your health. Ask, ask and ask again. Request a copy of your results and
keep a record of them- put them all in a file. This way you can see over time how
you’re progressing/improving or not. Keep on top of this as this is one of the few ways
you can take charge of your health.

5-   Find an advocate/support

It’s not always easy to understand what your doctor/nurse is telling you about your
health or to fully appreciate the impact of your health condition. Not to mention the
wading through all the services that available to support you, including WINZ and
Housing NZ.

Talk to the Renal Social Worker and see how she can support you. (Ask to be referred
to her through your nurse). Approach a budget service to work out what you are
exactly entitled to before talking to WINZ- be prepared and informed on your rights
and responsibilities when dealing with external institutions. Find someone to come
with you to these meetings if you feel unsure of how to deal with them. Find out what
you need to take to these meetings and prepare all documentation before you go.
Make sure you have support letters from your doctor and the social worker and nurses
so that you can quicken the long and tiring process of dealing with these institutions.

Find out who else is available to support you within the health system. Do you see the
Renal Dietician for example? You will need to be referred through your nurse. Talk to
your doctor and nurses to find out what other support you can access.

Get in touch with the Wellington Regional Kidney Society (WRKS) and see what they
can offer for you: Join the Kidney Society’s
informal monthly coffee group where you can meet other people in a similar situation.
Find out how they’re dealing with the issues you face. This is an excellent circle of
support for people at all stages of dealing with kidney disease and not only will you
find support but also tips and tricks around coping with your disease more effectively.
It’s also a great place for your family members to get support from others. Talk to

WRKS about their befrienders scheme; get connected with someone who has gone
through what you’re dealing with.

Ask to see a counsellor from the hospital. Have your family join you. This is a good
way for others in your family to understand not only what you’re going through but also
the impact of your condition on them.

6-   Listen to your instincts and pay attention

Know your medications and why you’re taking which one for what. It may be helpful to
write a word or two on the medication bottle to remind you. If you have trouble
remembering to take your medication, get a pill box which separates your medication
into times and days for the week. Put a reminder in your phone even. Make sure you
take all your medication when you need to.

Track your own progress. During the process of living with kidney disease there are
continual changes with medications, your diet, and your fluid intake for example. Keep
track of these and make sure you fully understand the changes and why BEFORE you
leave your doctors office. Maybe even take a notebook to your sessions and write
down step by step all that you need to do until your next session.

If you are feeling unwell, stop and work out what could be going on for you. Did you
take all your medication when you should have? Are you carrying more fluid than you
should be? Are you doing as much dialysis as you should be? Don’t sit on it and wait
for it to pass. As kidney patients on dialysis for example, we tend to put a lot of
pressure on our hearts. Get help if you’re unsure or unwell. Call the dialysis unit or the
home training unit as your first port of call if its kidney related. Otherwise call your GP.
Worse case scenario get to the emergency department of the hospital and get
checked out. Be proactive and hopefully catch whatever’s going on at the beginning. If
you know that something doesn’t feel right with your health then do something about

Be well and be proactive ☺

Tania Psathas

The Porirua Community Dialysis Centre (PCDC) now has an
“entertainment trolley”. The aim of this is to have a selection of
books, games, movies, puzzles, and music which can be wheeled
around for people to choose an item to help them pass the time
while on dialysis.

                 Do you have any suitable items that you could
                 donate to them? If so, please contact Nadine Smith
                 on 237 0074 or

The day dawned when it was time to sit down with my Renal Specialist and ascertain
once again where I had got to. So we met and reviewed my blood test results and I
was told “Arthur, it is time to start dialysis”. I found that interesting because I was
actually feeling pretty good. How wrong I was! My specialist was right on the button.

So it was upstairs to level 5 to meet with the pre-Dialysis Coordinator, who scanned
my fistula and said “Arthur, this could be a bit of a mission - we may needle you, the
vein may blow, and we will send you home for a couple of days to heal, and then get
you back again”. My approach to that was to say “Well, we will take this one step at a
time, no dramas from me and we will be cool and calm about it and I will do all I can do
to help the process. You only need to ask and I will do it”. Part of all that was making
myself available to come to the unit when they were able to fit me in.

So how did I get to this point in time? Approximately 10 years ago I was diagnosed
with renal failure, which in my case is Poly-Cystic Kidney Disease - a hereditary
condition. At that time I believed dialysis to be imminent. I dealt with that diagnosis by
learning to read my blood test results, taking my medication on time and doing
everything asked of me by my specialist.

I applied particular attention to my Potassium and Phosphate levels (hence diet) and
my Blood Pressure. There were changes I had to make and I embraced those
changes. By working with my Specialist, I consider the progression of my renal failure
was slowed down. It does, however, get you in the end.

It has been an interesting journey. Renal failure has an impact on how you live, your
relationships, your friends, and on your ability to earn money. Needless to say, it is
not an easy business.

And so at the beginning of the next week I fronted up to the Dialysis Unit and was
needled for the first time, and, as predicted, the vein blew so it was off home to heal up
and then back in a couple of days.

Over the next few weeks a number of things happened but as the pre-Dialysis
Coordinator had predicted, the fistula slowly started to toughen up; needling whilst still
difficult became less of a mission and I progressed slowly from 1 hour -to 2 -then 3 -
then 4 and I am now on the full 5 hours of dialysis. I am not yet on optimum pump
speed (an increase in the number of blood cycles through the machine) because I do
have a narrowing in the vein which is being attended to shortly.

During my time in the unit I have become aware that some people complain about
Dialysis Treatment and I wish to comment on that. I consider that every body with
renal failure needs to understand that the staff in the unit are very much part of our
renal community, that renal failure is not an exact science and that staff members are
highly-skilled people, and they are very much part of one’s lifeline to good health.
Clearly one needs to help them to help you.

I have to say that I have been amazed at the commitment these people have (on one
occasion it took them 2 hours to get me on the machine but they persevered) as well
as how they go about supporting you, and I clearly see them as exceptional people
and we are indeed privileged to have this facility and this calibre of people working in
it. They are amazing individuals.

Always remember that with renal failure you will make associations with medical
professionals and nursing staff that may last for many years and so what this is really
all about is people relationships, and people helping people. This is different from most
hospital situations.

So to those of you who have a complaint about your treatment, I put it to you: Have a
good look at your self, how you approach it, how you act, and what you say. It is
important that you treat everybody who is helping you with honesty, respect and
understanding because they deserve at least that, and in doing so you attain an
increased understanding of the process and an interaction that assists your journey
towards good health.

Today I feel great - my blood tests are good, and the benefits I am receiving from
dialysis are greater than I would ever have envisaged.

So to all the personnel in CCDHB Renal I simply say thank you both for the treatment I
have received and the opportunity to get to know you. With your skill and approach
you have made an immense improvement to my life and for that I am eternally

Of course renal failure is a long term condition - my journey continues but these days it
is with a new outlook on life and a positive attitude that I have not felt for a number of

Arthur Sanford

Once again, WRKS is raising funds by selling the
2010/2011 Entertainment Book. This year, the Books
will sell for $60 (plus $5 postage and packaging), and
the Society will receive $12 from the sale of each Book.

Entertainment Books contain hundreds of 25-50% off
and two-for-one offers from popular restaurants,
cinemas, hotel accommodation, the arts, and sporting
events. There truly is something for everyone, with great offers from Domino’s Pizza,
Cricket Wellington, Logan Brown, Reading Cinemas, Downstage Theatre and many
many more.

The official launch takes place on March 26th, so order your new Entertainment Book
now as they are sure to sell out quickly.

                   Phone: (04) 382 9693

                   Postal: PO Box 7302, Wellington South,
                   WELLINGTON, 6242


    (Taken from Kidney Daily – an online publication from The American Society of Nephrology)

The Los Angeles Times (3/10, Maugh) reports, "People who donate a kidney to a sick

friend or relative live at least as long as others in the general population," according to

a study published in the Journal of the American Medical Association.

Johns Hopkins University researchers found that "within the first 90 days after surgery

to donate a kidney, their death rate was slightly higher at three per 10,000, compared

with less than one per 10,000 in healthy non-donors," Bloomberg News (3/10, Ostrow)

reports. But, "over 15 years, there was no difference in deaths of donors compared

with others matched by age, health status, gender, and race." Dorry L. Segev, MD,

PhD, and team came to this conclusion after analyzing "data from a national registry of

80,347 living kidney donors in the US who gave their organ from April 1994 to March


The Time (3/9, O'Callaghan) "Wellness" blog reported, "While future research about

how organ donation impacts the donor's body systems in the long term is necessary,

researchers say that these findings indicate that kidney donation is a relatively safe

procedure, and one that should continue to be used for treatment of seriously

endangered patients."

According to HealthDay (3/9, Goodwin), the new study corroborates research

"published in 2009 in the New England Journal of Medicine" that "tracked nearly 3,700

kidney donors from as far back as 1963 and found their life expectancy was the same

as those who didn't donate."


     Michael Papesch President)                   389 5953

     Ted Fecteau (Treasurer)                      934 6330

     Rob Cameron                                  586 3640

     Dave Henderson                               972 7708

     Arthur Sanford                               479 0630

     Wayne Bedford                                526 4396

     Oliver Ibbetson                              971 7325

     Tania Psathas                                973 3909

     Robin & Kathy Howarth                        236 7552

     Alan & Margaret Griffith (Taupo bookings)    904 9884

     Sandra Lallemand (Patient Liaison Officer) 382 9693

These take place at 6.30pm on the third Wednesday of every month, and are open to
any member. The venue is the Royal NZ Foundation of the Blind, 121 Adelaide Road,

Our thanks go to….

               Copy Express in Petone,
       who kindly sponsors our newsletters,

                                                the Community Organisation Grants Scheme (COGS)
                                                 which is run by the Department of Internal Affairs,
                                                      NZ Post, which provides us with postage-paid

Perhaps the best way to stay informed about what your society is up to is to GET
INVOLVED! You can join the WRKS for $10 a year (or $15 for family membership).

   YES I would like to join WRKS and I enclose a cheque as follows

         Individual Membership       ($10.00)     $              Name

         Family Membership           ($15.00)     $              Address    ____________________________
         Donation (Much appreciated)              $
         Total enclosed with this form            $

   Receipt required?           Yes                No             Phone      Area Code (   )


   Please make cheques payable to Wellington Region Kidney Society Inc.
   Donations of $5 or more qualify as a tax deduction

   Please tick your main association with kidney issues.

        Hospital dialysis            Home haemo-dialysis            CAPD                      Outpatient

        Transplant                   Transplant Donor               Supporter

   Please send to the Membership Secretary, Wellington Region Kidney Society, PO Box 7302, Wellington 6242

 If undelivered, please return to Wellington Region Kidney Society, PO Box 7302, Wellington, 6242

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