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The Renal Messenger
IN THIS EDITION:
Editorial
CKS AGM 2015
Financial Summary
President’s Report
Dates to
Remember
Viv’s Pot Luck
Round up
KHNZ update
CKS COOKBOOK
2015 / Recipe
Dialysis in Australia
SONG survey
Trust update
MDU &
Membership
My introduction to
Dialysis—Noel
What I Do—Deanne
Dowding
Funnies!
Contact List
The Christchurch Kidney Society (Inc.)
Patient Support Group
SERVING THE LOCAL RENAL COMMUNITY FOR OVER 40 YEARS
Spring 2015
This issue has been funded by
The Canterbury Community Trust
Page 1 The Renal Messenger
FROM THE EDITORS DESK….
Spring 2015
This edition is a little earlier than the official first day of Spring, as I
wanted everyone to know about the cake stall at the Hospital on
Friday 28th August 2015, all baking gratefully received.
The Society’s AGM was held at the end of June and you will see
from the accounts on Page 3, that the Society is in a good financial
position. The Executive Committee stays the same as the previous
year, with the promise of new committee members from the recent
questionnaire sent out, which is very exciting.
This edition brings a statement from Murray Leikis regarding
dialysis in Australia and a survey you may wish to take part in by
SONG (Standardised Outcomes in Nephrology), please note
registration closes at the end of August 2015.
Our questionnaire also showed that people wanted more personal
stories from members. Noel has written an honest account of his
experience when starting dialysis and obviously this is a very
condensed version, but I hope that some can identify with this and
maybe take up Noel’s offer to chat, if needed. Veronica, Noel’s
wife, will give us her experience in the next newsletter. I really
appreciate the time Noel and Veronica have dedicated to this.
Many thanks to Deanne Dowding for her article also, if you are near
Cracroft, pop in and see her beautiful shop, especially if you looking
for a lovely gift.
As Spring rolls in, it is a time for me to start thinking of Christmas (a
very scary thought, I know). The venue is booked for our annual
Christmas Party and Father Christmas has already been busy, but
there are so many other things to do before this very important day,
where we can all get together again. Jo Houghton
Page 2 The Renal Messenger Spring 2015
ANNUAL GENERAL MEETING HELD 24TH JUNE 2015
For once the weather was not horrid for our AGM. It was lovely to
have our life members present, - Kelvin Lynn, Rodger Curragh, June
Shaw and Adrian Buttimore. Professor John Morton kindly
continues as the Patron of the Society, which is much appreciated.
The highlight of the evening was Robert Brydon accepting life
membership to the Society. A very moving 15 minute presentation
of Robert’s 38 (almost 39) years on dialysis was shown. Thank you
to all who attended. Also Special thanks to Vicky Larson and
Rachel Morris for assisting on the evening.
Would you come to the AGM if we went back to the dinner and
speaker format? Give us a ring and let us know—3795529.
Summary of The CKS Financial Report
for the year ended 31 March 2015
Income
Subscriptions 3,264
Members Donations 6,371
Fundraising 8,199
Bequests 51,000
Grants and Donations 38,919
Interest received 1,810
MDU 3,374
Total Operating Revenue: 112937
Expenditure
Audit 1,200
Wages costs 36,874
General patient support 6,645
Premises & administration expenses 8,723
Newsletter printing and postage 1,652
Care Packs 2,891
Other 3,168
MDU 8,617
Total Expenditure 69,770
Surplus for year 43,167
Current assets 111,409
Non Current assets 33,930
Current liabilities 11,291
Total Equity 134,047
Spring 2015 The Renal Messenger Page 3
Christchurch Kidney Society (Inc.) AGM 24 June 2015
PRESIDENT’S REPORT
It is once again very pleasing to be presenting the CKS President’s
report. Over the last 12 months the Society has successfully continued
to provide its members with support and care in many ways. We have
been able to do this through the kindness of spirit and goodwill of
many people. We are extremely fortunate to have such caring and
dedicated people around us.
As most will know we have had an integral change with our staff. With
Kate resigning in October last year, her position was advertised and Jo
Houghton secured the role. The transition has been seamless from my
angle. Jo has made the role her own, and her ability to put out fires and
seemingly endless energy never fails to amaze me. Jo has detailed
some of what her job entails in her report but it only scratches the
surface. The recent publishing of the CKS cookbook is an example of a
fundraising initiative that will be very beneficial to our members. Jo,
along with Viv, and our regular volunteers are the main face of the
Society and I applaud and thank them for the superb job they are
doing.
Our committee (however small), other volunteers, and our members
continue to generously give time and energy to enable the running of
our projects. From helping organise our annual Christmas party, to
supporting fundraising events, this help is vital to the running of the
Society. I acknowledge and thank them for their contribution. The
Committee is small and we always welcome new members, please feel
free to consider a nomination for yourself or a friend.
Spring 2015 The Renal Messenger Page 4
We are lucky to have a lot of support from outside our Society. Thanks
to grants this year from Southern Trust, Four Winds Foundation, The
Watson Foundation and The Canterbury Community Trust, COGS and
Pub Charity we can serve to the level that we do. Our close
relationship with the Nephrology Department, Ward 14 and the Home
Dialysis Training Centre gives us a wonderful support network. I would
like to thank the staff and the management from these areas. Of note,
Doctor John Irvine, his presence and continued commitment to the
Committee and our members is gratefully acknowledged. To Wendy
Cuthill, HDTC Clinical Nurse Manager, a big thank you also for her
ongoing commitment to running the MDU on our behalf, along with
Selwyn and Kieran, is very much appreciated. Other outside support
has come in the form of accounting advice and services from Anna
Morris and office and computer support from Peter Dini. Special
thanks to them both also. Our Patron, Professor John Morton, has
agreed to remain as such. We are privileged and grateful to have him
perform this role.
We remain in good stead at the CKS
financially and I am happy with the
direction we continue to take. I feel
lucky to be part of such a wonderful
caring organisation.
Greg Beach President
Spring 2015 The Renal Messenger Page 5
Page 6 The Renal Messenger Spring 2015
DATES TO
REMEMBER: Cake Stall in the Hospital Foyer
Friday 28th August 2015 (9am to 12 noon or earlier if sold out)
Due to the success of the last cake stall, we are going back again! Please let us know if you can contribute to this. We found single items sold best e.g. muffins and slices, however there was bidding on whole cakes! We will be in the office on Thursday 27th August (from 9am to 2pm) to receive goods and we can individually package your items for sale. Possible other drop off sites if required, please ring 3795529.
******************************************
Annual Christmas Party
Sunday 29th November 2015
Yes, believe it or not, it is not that far away! If you would like to contribute in any way e.g. raffle prizes, chocolate wheel prizes, or start planning what you could contribute to the produce table, please get in touch with us.
Every contribution is very much ap-preciated!
Invites will be sent out closer to the date, it will be held at the Woolston Club, as usual. We hope you can come!
Viv’s Pot Luck Lunch Round-up
Spring 2015 The Renal Messenger Page 7
A small group got to discuss exercise and the brochures
and the equipment that I brought along. We are all
informed that exercise is beneficial for us but what does
this mean to nephrology patients? As discussed at the Pot
Luck, many have little energy as it is and it’s hard to work
up the motivation to exercise, especially in winter. Other
ailments can inhibit this motivation too such as arthritic
joints. CKS has recently purchased a Peddler, a cycle with
no wheels (can’t fall off it at least) just sit on a chair and
pedal. Those at the Pot Luck found
it easy enough to use. Laura
Murray, Physio, has said that these
are beneficial for many. So, CKS is
now going to determine how best
we can help people get together
Spring 2015 The Renal Messenger Page 8
(NOTE VENUE CHANGE)
NEXT POT LUCK LUNCH
Thursday 1 October 2015 at 12 noon
Brain Institute, 1st floor, 66 Stewart St, Christchurch
Bring your own lunch, or something to share and enjoy
with other members and supporters
SHOWER DOME
IN RESPONSE TO VIV’S ARTICLE IN LAST NEWSLETTER REGARDING
HEATING AND INSULATION, TWO MEMBERS COMMENTED THAT THE
“SHOWER DOME” HAS BEEN BENEFICIAL IN THEIR HOMES. WE
RANG EMMA AT SHOWER DOME IN CHRISTCHURCH (386 2204) AND
SHE MAY BE ABLE TO OFFER YOU A DISCOUNT ON A SHOWER
DOME IF YOU RING AND MENTION SEEING THIS.
(Christchurch Area only)
with these. How can we at CKS assist you? We are interested
in your experiences with and thoughts on exercise so please
email, write or phone us. If you have a great routine, or have
joined a group, or find that a daily stroll is just the ticket
would you write to us and share your story? Thanks! - Viv
Page 9 The Renal Messenger Spring 2015
We have had a very busy few months with kidney health information forums being held in Palmerston North and a Chronic Kidney Disease workshop for Practice Nurses and GPs, having a stand and attending the New Zealand Society for the Study of Diabetes (NZSSD) in Welling-ton and the Primary Care Symposium also in Wellington, and attending the annual Renal Society of Australasia conference held in Perth.
The NZSSD symposium discussed some worrying statistics being shared, Dr Jeremy Krebs told how there are 50 new patients diagnosed with diabetes a day, with an increase in the prevalence of younger people being diagnosed, increase in the complexity of the disease and increasing disparity.
One of the speakers at the Primary Care Symposium, Buck Shelford, former All Black captain, spoke about his health issues and how this has influenced his work with other young rugby players, trying to instil the importance of looking after your body with good nutrition and exercise. It was great to hear about the many positive health initiatives that are in being put into place around the country in the primary care area.
The Renal Society of Australasia 2015 – Perth.
The RSA in Perth was a wonderful opportunity to keep up to date with the advances and practices in kidney disease. Sandy Neale from Christchurch Renal Unit represented the Kiwis and did us proud, talking about the initiative she and her colleague Becky Hayston had developed to enable patients on dialysis to connect through Social Media. The Facebook page is a closed group, therefore comments are private to the group, and requests are made to join the group with the decision to accept these are made by the administrator of the page. It is exclusively for patients and their supporters. Membership has
Page 10 The Renal Messenger Spring 2015
grown quickly and there has been a weekly coffee group formed as a
result. For those of you interested in joining the group check out their
Facebook page Kidney Failure Uncensored.
Monitoring Home Haemodialysis patients via a smartphone app was a
very interesting talk given by Mary Ann Nicado from New South Wales.
In her unit there had been a 24% growth in patients dialysing at home.
Home visits were resource dependent and many of their patients lived
some distance from the hospital, so an app was developed that the
patient downloaded onto their smart phone and entered their details.
Over time it downloads their treatment sessions with weight or high
blood pressure readings alerts that occur when loaded. This
information is loaded into the cloud so the nurses are able to review
the patients’ status. Patients are also able to indicate on the app if they
are happy or sad – nurses use this information to decide who they
need to contact first. Trends are shown making it easy to monitor the
patients. The feedback from the patients included; the app was easy to
use and they felt more relaxed now they know their treatment is being
monitored.
Just last weekend I presented a paper on Managing Chronic Kidney
Disease in Primary Care at the New Zealand Primary Health Care
Nurses NZNO Conference, in Wellington. The feedback was very
positive and certainly highlighted the need for further work in the
primary care area to identify and manage those patients with Chronic
Kidney disease to reduce the numbers ending up with end stage kidney
failure. So lots happening and lots to keep us busy.
Carmel Gregan-Ford
Page 11 The Renal Messenger Spring 2015
COOKBOOK 2015 $10 for members and patients
$15 for general public (add $4 postage if required)
Available from CKS Office 03 3795529
or email [email protected] (The delicious recipe on the next page is from the book)
Page 12 The Renal Messenger Spring 2015
Sour Cream Lemon Tart Ingredients (Serves 8) 250g Sweet Short Pastry (1 sheet pre-rolled) ½ cup Sugar Grated rind of ½ Lemon 2 tbsp Lemon Juice 250g Sour Cream 2 tsp Custard Powder or Cornflour 3 large Eggs
Method (Page 67 - CKS Cookbook) Preheat oven to 150 °C. Lightly grease or spray a 20cm pie or flan dish (preferably with a
removable base and fluted sides). Gently press the sweet pastry into the dish, trim off excess. Put sugar and rind into a food processor. Mix the custard powder (or cornflour) with the lemon juice and
put into the food processor. Add the sour cream too then process until sugar dissolves.
Then add eggs one at a time while the processor is running. Pour the mixture into the pastry base. Bake for 40-50 minutes, or until beginning to brown around the
edges and the lemon mixture is cooked through. Allow to cool. NUTRITION: Phosphate 76mg / Potassium 102mg (per serve)
Madeleine Price, Dietician, suggests serving the tart with seasonal fruit.
DIALYSIS IN AUSTRALIA
After some recent cases where patients have been upset at being charged for dialysis in Australia, some investigation and clarification has been sought.
Previously, the MOH website erroneously indicated that New Zealanders travelling to Australia were entitled to free dialysis whilst on holiday subject to space availability.
This in fact is not correct and there is no entitlement for New Zealanders to get free long term dialysis whilst on holiday in Australia. Due to the reciprocal health agreement, all New Zealanders are entitled to free acute care in emergencies. Booked dialysis on holiday does not qualify in this category.
The statement referring to this on the MOH holiday dialysis webpage has been removed to avoid any misunderstanding. There has been no recent changes in these rules, however some Australian hospitals have been tightening up on their budgets and have changed their charging policies.
The MOH have also indicated they will not put up any statements about what health costs are in Australia, as it is for individuals to seek this from the Australian authorities whom the NZ government have no authority or influence over as patients would do when travelling to any other country around the world.
There are still some hospitals that still offer treatment for free to holiday patients from New Zealand but this is becoming less frequent so it will pay for patients to make appropriate enquiries.
Murray Leikis, CCDHB
Chair of the National Renal Advisory Board
Page 13 The Renal Messenger Spring 2015
Disclaimer
While every care is taken to insure the accuracy of information, views expressed in the Renal Messenger are not necessarily those of the Society. Articles by non professionals are intended to interest and inform and are not intended as medical or dietary advice. This information should come from the medical professionals involved in your care.
Page 1 The Renal Messenger Autumn 2014 Page 14 The Renal Messenger Spring 2015
Do you want to have a say on what outcomes should be measured and reported in haemodialysis research?
We are conducting an international survey to find out what effects of treatment and care (also known as outcomes) are important and relevant to patients on haemodialysis, family members, caregivers, and health professionals.
The survey will ask you to rate the importance of different outcomes in haemodialysis. This type of survey is called a Delphi survey as it is used to get everyone’s opinion and to try to reach agreement on the most important outcomes to be included in research involving people on haemodialysis.
You will be asked to complete three short online surveys about two weeks apart during September/October 2015.
The survey will tell us about what outcomes are important to you, and can help to ensure that haemodialysis research includes outcomes that are relevant to as many people as possible.
If you are interested in participating in this Delphi Survey, please register at: http://songinitiative.org/index.php/register-for-the-delphi-survey/
Registration will close end-August 2015.
THE CKS GRAEME COX YOUTH EDUCATION TRUST The Trust has received $8,263.21 from SCOTST (South Canterbury Organ Transplant Support Trust) which wound up recently and donated remaining funds to Trusts covering the same objectives. We are very grateful for this donation, as applications to our Trust have increased over the past 12 months. We are also very grateful to be given the opportunity to raise funds for the Trust through The Warehouse at South City, Christchurch. Once a purchase is made at this branch of The Warehouse you can take a token and place in the box with our name on it. This branch of The Warehouse also supports the CKS by giving us a generous discount on items we purchase for our care packs that are given to all new dialysis patients and transplant recipients and live donors. Please support them if you can.
Page 1 The Renal Messenger Autumn 2014 Page 15 The Renal Messenger Spring 2015
Thank you CKS for my new iPad. I have been practicing my maths, reading and writing on my iPad over the school holidays. The kids games are a fun treat too! Thanks again, Riley Haywood Riley’s Ipad was funded from the donation received from the Wigram Lions Club.
Page 13 The Renal Messenger Summer 2014 Page 16 The Renal Messenger Spring 2015
WHAT I DO… Hi, my name is Deanne Dowding (nee Watkins) and I have been part of the
renal ‘family’ for over 35 years now! To give you a brief medical history, I
contracted a virus back in 1980 at the tender age of 20 and both my kidneys
stopped working. A bit of a shock to the system! I had never really been
unwell, apart from ‘normal’ childhood illnesses. I was introduced to dialysis
and so my journey started. After 1 year I was lucky enough to receive a
transplant and was able to live without dialysis for about 5 years. As the
kidney started to fail I knew my fate and I started another round of dialysis. In
1987 I received a second transplant. I was told the kidney was an excellent
match for me and it certainly has been fantastic! My kidney has been with me
for 28 years now and still going strong (touch wood!)
I meet my husband, Mal in 1989 and in April it was our 25th wedding
anniversary. We celebrated with a fantastic trip to England, France and Italy.
We have two amazing kids, Simon 22 and Bridget 19. I consider them my
greatest achievement and they continue to make us very proud parents. I have
a stepson Rory, he and his wife Amy Jane have a beautiful daughter, Josephine,
so we are now proud grandparents.
I own a baby boutique “Baby Belle” and spend most of the working week at
the shop, my home away from home! It is a
fun place to be as my customers come in to
purchase for a new baby and there are
always smiles, fun and laughter. Of course
one of my most important roles as a
business owner is to go the Gift Fairs to
purchase for the shop, and shopping just
happens to be one of my favourite past
times, so it is a win-win situation!
Mal has his own building company and we enjoy the process of building new
homes, we spend a lot of time together planning the project and enjoy seeing
the end result. This means of course that we have moved a few times and the
next move is due next month! Mal is also very talented at running a ‘chocolate
wheel’ if you have attended the CKS Christmas party you will recognise him.
We own a beautiful Golden Retriever, Millie, we walk together each morning,
she gets me out of bed on these cold mornings because I know she is at the
bottom of the stairs waiting for me. At 10 years old she has more grey hair
than me and our walks take a little longer but she loves it.
If you are passing my shop, please call in and say hello and introduce
yourselves and if you need a gift I would be very happy to give you a discount.
Christchurch has always been home for me and I look forward to seeing our city
back to some semblance of order. I love the hills and rivers, the beautiful view
of the snow covered Alps and especially the changing seasons, so am now
looking forward to Spring!
I would also like to mention our Medical team, for those of you who remember
Dr Ross Bailey to our current team, we are so lucky to have such dedicated and
caring people looking after us.
Thank you, Deanne Dowding
BABYBELLE
(Gifts from the Heart)
150 Cashmere Road, Cracroft, Christchurch 8025
P: 03 338 3334
M: 0274 510 243
[email protected] / www.babybelle.co.nz
Spring 2015 The Renal Messenger Page 17
Page 13 The Renal Messenger Summer 2014 Page 18 The Renal Messenger Spring 2015
2015/16 MEMBERSHIP At the recent AGM it was voted that our membership fee stays at $15.00 (includes immediate family) from 1/4/15 to 31/3/16.
It is always appreciated if subscriptions are paid promptly as the income is important for the Society’s functioning. Thank you to those who have already renewed.
As always the committee is very aware that some members may find it difficult to find the extra money and if this is the case, please do not hesitate to get in touch with our Field Officer, Field Worker or one of the committee members.
MOBILE DIALYSIS UNIT (MDU)
IF YOU WOULD LIKE TO BOOK THE MDU CONTACT:
Dialysis Services
Christchurch Hospital
Ph: 3640 614
Or Email: [email protected]
Page 13 The Renal Messenger Summer 2014 Page 19 The Renal Messenger Spring 2015
MY INTRODUCTION TO DIALYSIS 2006 “You will need to go on dialysis.” That was a frightening sentence from the Doctor. My name is Noel and my immediate reaction was to say “shit” I never expected that. They had just told me that my live donor had fallen at the final hurdle. I chose hemodialysis because my older brother had been on hemo and I understood how he managed his life. The change in lifestyle was dramatic. Not only for me, but for my wife, Veronica, also. Issues we faced and had to deal with were numerous: Continuing restless legs. They limited everything you did, from
going out, to sleeping. I decided to sleep in another bedroom. The three months training went well and I realised early that the
real secret was putting those massive 15 gauge needles in your arm properly.
I wanted to keep the disturbance to Veronica’s life at a minimum so she could continue to work. I recruited a pool of very generous people and worked on a roster system. I called them on a Sunday night and made up my roster for the week. There were about 20 people on it.
Most important, I bought a decent TV and CD player. ALL PRACTICAL THINGS HAD BEEN DEALT WITH…… We were both angry at these big changes we had to make. We struggled with our own communication. Meals out and pictures, part of our regular life, became difficult because of the restless legs. I dined on entrees and often walked out in the middle of films. I couldn’t keep still. We had been married 25 years, so the changes in sleeping arrangements were difficult. Sexual relations were non-existent during this time because of my sexual dysfunction and the lack of good communication.
Page 20 The Renal Messenger Spring 2015
Other areas were the uncertainty of how long it was going to be, the constant tiredness, lack of brain function which I didn’t know about until I found out after a few months, I couldn’t even read the paper or watch TV. Concentration was a major problem. My experience was that the technical staff were fantastic through the whole process, but there was a lack of any emotional support. One social worker was supposed to cover the unit. All she could ever do was our social service entitlements. This was the whole area that we found daunting. I believe that specialist counsellors should be trained to deal with some of these issues.
I hope you find this helpful. Veronica will write the experience from her point of view in the next edition of this newsletter. If you wish to speak to me, just call the Kidney Society. I will be happy to let them give you my number.
THANK YOU SO MUCH!
The Christchurch Kidney Society acknowledges support
from these organisations:
QUESTIONNAIRE RESULTS: A total of 25 were returned and overall people are happy with the name and logo of this publication. There were a couple of alternative suggestions that made me smile. Most are also happy with the content of the Renal Messenger, and some great suggestions were made for future articles. Personal stories were appreciated by everyone, and something readers would like to see more of.
We have a few things to work on, for example:
Trying different days/times for Pot Luck lunches.
Possibly changing the format of the AGM.
Work on the good list of article suggestions.
I have collated the results and have sent an email to the CHCH Nephrology Department , KHNZ and the Executive Committee of the Society.
There were quite a few “medical” questions and I urge everyone to write down the questions they have, so when they see their Doctor/Nephrologist they can ask these in relation to their own situation.
Mostly, thank you for the lovely positive comments, for example:
“Having had a transplant in Christchurch and being visited by a member of the CKS, I think you all do an amazing job”
Spring 2015 The Renal Messenger Page 21
The “Driving Miss Daisy” vouchers kindly
donated by Janine Kenworthy were won
by K Bates and J Watson. Thank you to
everyone who sent back their question-
naires, the information is extremely
valuable to us.
SPRING JOKES: Spring Fever
Four high school boys afflicted with
spring fever skipped morning
classes. After lunch they reported
to the teacher that they had a flat
tyre.
Much to their relief she smiled and said, "Well, you missed a test
today so take seats apart from one another and take out a piece of
paper." Still smiling, she waited for them to sit down.
Then she said: "First Question: Which tyre was flat?"
Spring 2015 The Renal Messenger Page 22 SPRING FEVER!
WHAT SICKNESS
CAN YOU GET
FROM A
MATTRESS?
The Christchurch Kidney Society (Inc.)
CONTACT LIST
Patron: Professor John Morton
President: Greg Beach Ph: (H) 3515401
Vice President: Judy Giles Ph: (H) 388 8054
Secretary: Jo Houghton Ph: 021 2860 309
Treasurer: Roger Sandford Ph (W) 366 6254
Committee:
Noeline Cox Ph: (H) 338 9902
Pam Crawford Ph: (H) 357 9404
Kathy Tuu’u Ph (H) 351 3401
Sara Ford Ph: (H) 980 2073
Nephrology Associates: Dr John Irvine / Dr Nick Cross
Field Worker/Membership Viv Smith Ph: (W) 379 5529
Phone: (03) 379 5529
Email: [email protected]
Kidney Information Centre
Level 1, 230 Antigua Street
Christchurch 8011
