The WAiT For A Kidney - The Kidney Foundation of Canada

FALL 2015
The Wait for
a Kidney:
A Story from our
Volunteer Family
of the Year
By Melanie Ferris
Part two in a series of two*
Blair, Irene, Jack, and Leo are the
Waldvogels. Blair has been on dialysis for
five years. At age 44, he started this lifesaving treatment for kidney disease.
Team “Walk”vogel were the top fundraising team at our annual
Kidney Ride, Glide, Stride event in Winnipeg this year. They raised
$7930 to support kidney health in Manitoba.
In this issue
ÎÎ Executive director’s message: Page 2
ÎÎ Upcoming events: Page 2
ÎÎ Volunteer with us: Page 2
ÎÎ Filipino Street Festival: Page 3
ÎÎ Bursaries awarded for kidney patients: Page 4
ÎÎ Chamois Car Wash: Page 5
ÎÎ New program for home dialysis patients: Page 6
ÎÎ The McLaren’s 20 years of support: Page 7
ÎÎ A test of Faith: Page 8
ÎÎ Kidney Ride, Glide, Stride: Page 10-11
Follow us!
Kidney Foundation of Canada
– Manitoba Branch
“Although dialysis is difficult, I am very
appreciative that there are dedicated and
gifted medical professionals that give
me the chance to carry on living a fairly
normal life,” says Blair.
“Without them, my story would have a
much different ending. The work that the
researchers do is valuable and is helping
so many patients today. With the number
of patients on dialysis, it’s important to
continue with research that will prevent
kidney disease and improve treatment.”
A long road: The wait for a
transplant
Blair has been on the waiting list for
a kidney transplant for 5 years, since
October 2010.
continued on page 4
@KidneyFdnMB
www.kidney.ca/manitoba
Updates from the Foundation’s
Executive Director
Bison Transport
By Val Dunphy
Welcome to our third newsletter
of 2015! Autumn is a favourite
season for many, as it is a time to
reflect on life changes. It’s also a
good time to get outside and be
active, exploring the beautiful
changing colours, the crunch
of the leaves under your feet,
and the bountiful harvest from
Manitoba farmers.
Personally, September is my
favourite month for activities,
especially with the Kidney
Ride, Glide, Stride events. Staff
are excited to see the many
families and teams that come
out to support their loved ones
and friends. That “support” is
invaluable!
In this issue of the Kidney Care
Connection, you’ll find updates
about the types of things we’ve
been doing, along with news
from our supporters and kidney
patients in Manitoba.
I was thrilled to attend the
McLaren’s Pig Roast in Roland
this July, where they celebrated 20
years of hosting this very special
event. It is heart-warming to see
the three generations of McLarens
working together to host this
wonderful community feast.
You can read more about the
McLarens on page 7.
We are happy to share the second
part of The Waldvogel’s story—
our Foundation’s Volunteer Family
of The Year. While Blair Waldvogel
continues to wait for a kidney
transplant, we are thrilled that
little Faith Konitz received her
kidney on May 1, 2015. She is now
doing well and back in Winnipeg.
You can read her story on page 8.
As the only charity dedicated
to helping Manitobans (and
their families) who are living
with kidney disease, it is always
a busy time for the Manitoba
Branch. We would like to thank
all who continue to support The
Foundation through monetary
donations, helping us to spread
the word, and through volunteer
efforts.
In the spirit of kidney health,
Val Dunphy
“Support
those who
support us”
Sign up for or contribute to our
newsletter
Upcoming Events
Manitoba’s Finest Fashion
Show
ÎÎ Tues., December 1, 2015
ÎÎ Millennium Centre, 398
Main Street, Winnipeg
Doors open at 6:30 pm
Cost: $75/ticket
(sponsorship
opportunities also
available)
Tickets available from
www.kidney.ca/
manitobasfinest. SeeKD Clinic
ÎÎ Thurs., November 12,
2015
ÎÎ From 10:30am to 2:30pm
ÎÎ Yellowquill College,
Winnipeg
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We encourage you to sign up
for our email newsletters. We’ll
continue to share provide paper
copies for those who love the
hard copy version of our Kidney
Care Connection, but others might
enjoy checking out our email
newsletter for even more content.
We welcome new stories. If
you’d like to share yours for our
Winter 2015 edition, please email
the editor by November 2nd at
[email protected].
Volunteer
opportunities
Do you want to volunteer
some of your time? Contact
our volunteer coordinator
Maureen by email at
[email protected] or
by phone at 204.989.0806.
Our supporters
FILKHI volunteers (from left to right): Troy Quinto, Frances Alhena Quinto,
Mercy-Anne Guevarra, Loribel Tinay, and Bong Tinay
Kidney Health at the Filipino Street
Festival
By Mercy-Anne Gueverra
The Filipino Kidney Health Initiative (FILKHI) thanks everyone who
visited our booth at the Manitoba Filipino Street Festival on August 22!
The festival is an annual event to celebrate the vibrant Filipino culture.
The day started with a parade in the morning, followed by
performances, food, and booths. FILKHI officially launched at this event
and we received great responses. We set up a booth indoors, handed
out educational material, giveaways and organized two contests,
including a social media video contest!
Within two days, we tripled our Facebook “likes” and had multiple signups for kidney screening clinics. Despite the rain, everyone had a great
time and we look forward to next year’s festival!
FILKHI was created in October 2014 to increase kidney health
awareness among Filipino Canadians, help them understand the risks
and create diet, exercise, and educational programs.
Most Filipino people are unaware that traditional Filipino foods are
high in sodium, fat, cholesterol, and sugar. These diet trends can lead to
health implications such as high blood pressure, diabetes, and kidney
disease. We want to remind Filipino-Canadians that you can still eat the
same, delicious food with healthy alternatives and fun exercise.
Thank you to all our volunteers and The Kidney Foundation for their
support!
To keep up-to-date with FILKHI news and events, “like” us on Facebook
(FILKHI) and follow us on Instagram (@FILKHI).
3
Many businesses hold third-party
fundraisers for the Foundation
throughout the year. At this time,
we’d like to recognize many of
these wonderful supporters who
contribute greatly to our mission
work.
ÎÎ The Heritage Co-op Food
Store in Brandon raised $1464
for the Foundation by selling
our “beans.”
ÎÎ M&M Meat Shop at Kenaston
Commons held a BBQ in June
and raised $1120 for our
cause.
ÎÎ Super Thrifty raised $743 by
selling “beans” throughout
June and July at their stores
in The Pas, Ste Rose du Lac,
Virden, and Brandon.
“Beans” in the Westman
Region
Any business can take part in
this fundraiser—simply make
the fun and attractive paper
kidney “beans” available to
your customers for $1 each. We
provide the beans to any business
who wants to support us in this
way. This promotion is visually
appealing and demonstrates a
business’ support for an important
local charity.
You can get involved in our
fundraisers at any time. For
more information on the “beans”
program, contact our Westman
Region Coordinator Lisa at
[email protected] or by
phone at 204.717.0432.
continued from page 1
“The wait time for a transplant
has been getting longer,” Blair
says. “When I started dialysis,
the average wait time could be
anywhere from two to six years.”
Improving the system
The Foundation’s Executive Director
Val Dunphy presents a bursary
award to Winnie Yuen.
Patient
bursaries
awarded
By Maureen Nichols
Congratulations to Winnie Yuen
and Gursimranjit Kaur who
received the Vahan Melikian
Bursary Award and The Duve Little
Memorial Bursary Awards.
These young women both attend
the University of Manitoba. They
are grateful to the families of
Vahan Melikian and Duve Little
for making this possible.
“Now there are patients that have
been waiting for eight years. It
may be time to try something new
in Manitoba, which now has the
longest wait time in the country,”
suggests Blair.
“Most people are in support of
organ donation but many haven’t
made that choice clear by signing
up to donate their organs or
discussing it with their family. To
change the culture around organ
donation, perhaps a move to a
presumed consent (automatic
opt-in) system may provide the
boost we need here.”
“Having more organs donated
needs to be priority one,” says
Irene. “It’s very hard waiting for
‘the call.’ Your life, your family’s
life, is put on hold in a way. It’s
always at the back of your mind
… when will it happen, WILL
The Foundation has two bursaries
available for full or part-time
students attending postsecondary programs who are a
person living with kidney disease;
or the spouse or dependent child
of a person with kidney disease.
We will make the bursaries
available again in 2016, so let
us know if you’d like to receive
information when it becomes
available.
We wish Winnie and Gursimranjit
much success in their academic
endeavours.
The Waldvogel family
4
it happen, will it go well? Not
knowing where you are on the list
is disheartening. We don’t want
to wait anymore. It’s already been
five years.”
“Organ donation is so important,”
states Irene. “If a life is taken,
wouldn’t it be wonderful for that
life to give someone else their life
back? It’s a beautiful thing!
Looking ahead
Irene’s hopes for the future are
simple: “That Blair gets his kidney
transplant soon, that it goes well,
and that we can make plans, even
something as simple as going out
for breakfast, without referring to
a dialysis schedule first.”
She encourages Manitobans
to visit the online registry at
www.signupforlife.ca.
*Part one of the Waldvogel’s story
appeared in the summer issue of
the Kidney Care Connection. You
can read the full story on our
website (www.kidney.ca/manitoba).
Click on “News and Events” to find
the story.
How dialysis affects
family life
By Blair Waldvogel
Dialysis impacts family life in many ways:
ÎÎ Financial: We’re fortunate that I have longterm disability coverage that provides an
income. However, my income has been
reduced significantly which requires a lot of
adjusting. Even though we’re not in financial
trouble, the things you’ve planned for and
dreamt about are no longer possible.
ÎÎ Diet: I have to follow a fairly restrictive diet.
This makes it hard for others in the family to
fully enjoy the foods that they like and that
are healthy for them. Plus, with young
children, it makes it more difficult to expose
them to a wider range of foods.
ÎÎ Scheduling: It’s difficult to schedule things.
There’s not a lot of flexibility in my treatment
schedules. When we have something coming
up that I need to attend, Irene and I have to
sit down with the calendar and mark “D”s
on treatment dates weeks in advance to
make sure that I’m meeting my treatment
requirements.
ÎÎ Vacations: These can be really difficult to
coordinate. If you want to travel, you have to
find a destination that’s close to a hospital
that offers dialysis treatments with a workable
schedule, and at an affordable price. Manitoba
Health only reimburses a flat rate, which in
our experience, is only a portion of what
we’ve had to pay for dialysis sessions in other
countries. There are vacations that we’d like
to do with our boys while they are at the right
age, for instance Disney, but the cost and the
logistics of dialysis just makes it unworkable.
Being on dialysis, you never get a long
weekend and you never get to fully enjoy
a vacation.
ÎÎ Dialysis at home: While this gives some
flexibility, it does require using a significant
part of your home for equipment and
supplies.
ÎÎ When you’re on dialysis, your whole family
is on dialysis. You can carry a sense of guilt
as your condition often dictates what your
entire family is able to do. Although they
all understand the situation and are very
supportive, I feel like all of this is very unfair
to them.
Chamois Car Wash
supports kidney health in
July
By Melanie Ferris
The Chamois Carwash in Winnipeg raised funds for
research and kidney health programs in Manitoba
by selling paper kidney “beans” for the 12th straight
year!
The Chamois has raised over $88,500 over the past
12 years. This year, 3 locations (85 Reenders Drive,
850 Waverley Street, and 1285 St. James Street)
helped raise $18,509!
For the entire month of July, The Chamois supported
The Foundation through the Buy-a-Bean Campaign.
Customers could buy a platinum or brightly coloured
‘kidney bean’ that they prominently displayed in
their customer area.
On July 15, the Chamois location at 850 Waverley
Street opened early from 6am to 8am, donating all
proceeds to the Foundation during this time.
“The Chamois, its employees, and customers are
dedicated to raising funds to support those affected
by kidney disease,” says Val Dunphy, Executive
Director of the Foundation. “Businesses like The
Chamois are an integral part of the solution to
helping support
research, programs,
and services for
Manitobans with
kidney disease.”
Support those who
support us!
5
New program
helps home
dialysis patients
Patients who have their
hemodialysis treatment done at
home will now have additional
costs for water and electricity
bills covered by a first-of-itskind provincial program, Health
Minister Sharon Blady announced
in August.
“Utility costs can add up
for patients who undergo
hemodialysis treatment at home,
and we will be there to reimburse
additional costs,” said Minister
Blady. “We hope these new
supports will encourage more
patients to undergo hemodialysis
treatment in the comfort of their
own home and enjoy a better
quality of life.”
The minister added that
additional hydro and water
expenses can range from $704
to $2,116 a year in the City of
Winnipeg. Reimbursement will
be based on utility use associated
with individual patient’s dialysis
schedules and the type of home
hemodialysis machine used.
The operating costs for home
dialysis treatments are nearly 50
per cent less than hospital dialysis,
reducing the need for hospital
space and requiring the support
of fewer health-care workers.
“With the support of this program,
we hope to see even more people
utilizing home hemodialysis and
experiencing all the benefits it has
to offer,” said Dr. Mauro Verrelli,
medical director of the Manitoba
Renal Program.
In August, 60 patients were
undergoing hemodialysis
treatments at home, allowing
Media gather at the home of a dialysis patient in Winnipeg, where the
announcement about this new program was made in August
“W
e hope these new
supports will
encourage more patients to
undergo hemodialysis treatment
in the comfort of their own home
and enjoy a better quality of life.”
additional dialysis centres, which
ensures funds can be further
invested in front-line care,” said
Minister Blady. “With this program,
Manitoba has again found an
innovative way to help patients
get care that is better for them,
enhance health service delivery
and increase health capacity while
reducing costs to the provincial
health system.”
patients to schedule their
own treatment times. Home
hemodialysis requires less travel
for health-care patients and less
exposure to infections.
Manitoba is the only province
in Canada to offer this type of
reimbursement program. The
Kidney Foundation of Canada is
administering the program.
“We commend the Province
of Manitoba for launching this
reimbursement program for home
hemodialysis patients,” said Val
Dunphy, Executive Director of the
Foundation in Manitoba. “This will
truly assist families affected by
kidney disease.”
“When people with less
complex care needs can do their
hemodialysis at home, it reduces
the need to build and staff
6
Dialysis patients Mendel Schnitzer
(left) and Mukhtiar Singh (right) of
the Nocturnal Home Hemodialysis
Patient Action Group were
instrumental in making this
program a reality.
The McLaren’s Pig
Roast: A Family
Tradition to
Support Kidney
Health
By Melanie Ferris and Val Dunphy
July 3, 2015, marked the 20-year
anniversary of an annual family
tradition that benefits Manitobans
suffering from kidney disease. The
McLarens of Roland, Manitoba,
hosted their 20th annual pig roast.
The event is a family affair, started
by Clarke McLaren in 1995. He
was inspired to start the event
in honour of his late wife Betty,
whom he married in 1949. She
had polycystic kidney disease
and needed to go on dialysis. She
started her treatment in Carman,
Manitoba in 1977. She did dialysis
for almost 15 years, until she
passed away in February 1991 due
to complications from hip surgery.
When Betty started dialysis, she
needed to teach doctors about
kidney disease and dialysis
because so little was known about
the disease at that time. Betty had
school classes come and visit her
in the hospital while she was on
the machine, and she always did a
fundraiser every year.
The McLarens supported The
Kidney Foundation when selling
peanuts and candies was one of
the fundraisers—that was 20 years
ago. Clarke quickly recognized
that he was not good at selling
these types of items, so he urged
his children to host a pig roast. The
first year, they raised $1585!
Since those early days, the family
has done a paramount job of
educating their community, and
surrounding towns about the
chronic disease and its treatments.
Kidney disease runs in the family—
The McLaren family welcomes friends from neighbouring communities to
their Roland farmyard for their annual pig roast.
two of Clarke and Betty’s children
suffer from kidney disease as well.
Their son Don, now 64 years old,
received a kidney transplant in
2002. Their younger daughter
Linda, now 61 years old, also
received a kidney transplant from
a friend in 2010.
For over a decade, Clarke, Don, and
Shirley hosted the pig roast until
Clarke’s grandchildren took over
the tradition in 2012. Although
“the kids” now run the event,
Clarke continues to be involved,
supervising the roasting and
carving of the pig.
Anyone can attend this event.
Many attendees on Friday night
had attended the event regularly
over the years. People attend from
Carman, Morden, Ninette, and
other communities. Everyone in
the community asks the family
when the event will happen,
and they usually feed 175 to 200
people at each event.
The 2015 event had over 100
guests and raised $7265. With
funds raised at the 20th annual
pig roast, the McLarens hit the
milestone of donations totalling
$100,000 to the Manitoba Branch
of the Foundation!
7
Interested in attending next year’s
event? You can contact us to get
more information about how you
can support the 2016 event.
Thanks to the McLarens, the
Foundation is able to support
research into treatment for
kidney disease. It is through
such research that complications
during transplant and dialysis are
greatly reduced and survival rates
are improved. We also use funds
to support important programs,
such as the short-term financial
assistance program that helps
patients who are in an urgent
financial need and who have
nowhere else to turn for help.
Left to right: Father Clarke,
daughters Leanne and Linda,
Shirley and Don (son). Missing from
photo is daughter Tracy.
A Test of Faith:
An Interview
with Sarah
Konitz
By Melanie Ferris
Sitting quietly in her stroller, she is
small for her age—you wouldn’t
know that she is four years old.
Meet Winnipeg resident Faith
Konitz, a true fighter. Faith has
been on dialysis since she was
only two days old.
Sarah and David Konitz are
proud parents to Faith. At
28 weeks of pregnancy, they
learned that Faith’s kidneys were
not functioning. They received
the option of terminating the
pregnancy.
“She’s my fourth child,” Sarah
explains. “I knew she was really
strong inside of me. We continued
with the pregnancy.”
When she was born, Faith was put
onto a ventilator. She was in the
hospital for about two months.
“Her lungs were very sick,” Sarah
recalls. “She was on peritoneal
dialysis at home. She did fairly
well.”
Getting ready for a
transplant
Faith had problems with her
catheter, so she ended up on
hemodialysis. She had increased
energy with this treatment.
Sarah and David were taking Faith
for dialysis six days a week. They
decided to get her ready for a
kidney transplant. Both parents
got tested and were a match to
donate a kidney to their daughter.
They decided that David would be
the donor.
The Konitz family took part in our Kidney Ride, Glide, Stride event
in Winnipeg.
Change of plans
In summer 2013, the transplant
surgeon at the Health Sciences
Centre did not feel comfortable
doing the surgery. David and
Sarah looked for another hospital
where the transplant could be
done, and they found the Lucile
Packard Children’s Hospital in Palo
Alto, California.
“We went to California in January
2014,” Sarah explains. “She had
an MRI, a cardiac cath, to make
sure her heart was strong enough
to handle the transplant. They
agreed after a week that they
could list her in California.”
Waiting for “the call”
“We went on their transplant list
in February 2014. We thought
we’d be on the list for a month or
two, because they have a lot more
donors than we have here,” Sarah
states. “The only thing is that Faith
needed a kidney from a child or a
small adult.
8
“A year went by and we still didn’t
get the call, we were just waiting,
waiting, waiting for the call.”
Relocating to California
After a year went by, California
health care providers reassessed
Faith. She was now able to
accommodate an 11-centimetre
kidney—an adult-sized kidney.
In March 2015, the Konitz’s
relocated to California while
they waited for the kidney.
Sarah’s mom, Carolyn, relocated
to Winnipeg to look after the
three older children (Tanner, 14,
Mackenzie, 12, and Grace, 12). The
Konitz’s were able to afford the
move thanks to fundraising they
had been doing throughout the
year, as well as help from their
church.
May 1: Receiving “The Call”
On May 1, they received the call
that there was a kidney for Faith.
“She ended up getting an
American kidney,” Sarah explains.
“We waited 6 weeks.”
“She was on the northern
California region waiting list.
Her kidney came from Modesto,
California,” Sarah says. “We think
the kidney came from a 17-yearold girl who died in a car accident.
They got both the kidneys and
a liver from the same donor, so
they did three transplants that
weekend.”
Manitoba Health covered the
transplant costs—the hospital
stay and the medications while
Faith was in the hospital. The
Konitz’s had to pay for their
accommodations and living
expenses.
California. Doctors didn’t feed
Faith for at least two weeks after
her transplant. While her lungs
began to recover, she still wasn’t
herself.
An MRI was completed, which
found that there had been no
strokes or blood clots. Back in
Winnipeg, doctors suggested that
Faith had suffered a brain injury.
“She was on large amounts of
heavy drugs. We don’t know if it
was that or the malnourishment
that affected her brain,” Sarah says.
“Basically we were left with our
child who was not our four-yearold child.”
Life after the transplant
Faith is now in Winnipeg
and re-learning everything,
such as rolling, sitting, and
communicating using sign
language. Although Faith was
born hearing, she now depends
on sign and body language to
communicate with others. Health
care providers believe she lost
her hearing from a drug called
gentamicin.
“It’s going to be months now
before she walks,” Sarah says.
Long road to recovery
After the transplant, Faith had
extra fluid in her body that
affected her recovery.
“We struggled with her lungs,
they were not well, it was like she
had pneumonia,” Sarah says. “The
first three weeks were a struggle
with balancing the fluid that her
adult kidney needed with her
lungs.”
Faith remained in the Intensive
Care Unit for two months in
“We have to keep our eye on the
fact that she has a kidney that’s
working perfectly and she’s not
having to have dialysis anymore,
and focus on the positives. Every
day she’s making progress. She
will recover.”
“Every day she’s doing a little bit
more and she’s kind of settling
into life here. She’s a pretty
happy little girl,” reflects Sarah.
“She’s always been that way, she
has such a beautiful little smile.
Little hints of her personality are
coming back. She’s a bit of a joker,
9
Faith Konitz is recovering after her
kidney transplant in May.
she’ll just stare at you and raise
her eyebrows at you.”
Hopes for Faith’s future
“Our hopes for her are that she’s
going to make a full recovery, that
she’ll be walking and running and
signing again,” Sarah says. “We’d
like her to go to school next year.
Our main hope for her is just to
live a normal a life as possible.”
“All of this is God’s will. Our family
has amazing faith, which is Faith’s
name, but we just have such
a strong faith and it’s the only
thing we’ve clung to this whole
time. Just knowing that God is in
control of all of this and he’s just
looking out for Faith. Even at the
most dire times, that’s all we had.”
Want to read more about Faith’s
story? Check out the electronic
version of our newsletter for Sarah’s
advice to other parents raising
children with a chronic disease.
Annual Kidney Ride, Glide, Stride
Winnipeg
Our 13th annual Winnipeg Kidney Ride, Glide, Stride
event happened at the St. Vital Park on Sunday,
September 13. Our supporters raised more than
$44,500 to support people living with kidney health
issues in Manitoba.
Top fundraisers for the event were Evelyn Smith,
Stacey Linton, James Zacharias, Betsy Thomas,
and John Kotowicz. Teams raising the most pledges
were Team “Walk”vogel, Vickar Automotive
Group, and Team Dawson.
We thank our volunteer organizing committee, who
were instrumental in planning the event and doing
everything from set up to take down:
You can find more photos from Steve Salnikowski
(Chronic Creative) in our electronic newsletter
ÎÎ Debbie Blair
ÎÎ Mario Kostanjevic
ÎÎ Janice Mullen
ÎÎ Maureen Nichols
ÎÎ Claudia Senkiw
ÎÎ Janet Yuen
Thank you to all of the supporters who earned
pledges to support their participation. We especially
want to recognize the top fundraisers for this event:
Harvey Bartley and Judy Richardson and the top
fundraising teams were Team Anderson, Wyatt’s
Kidney Beans, and Keepin’ It Renal. Great job
everyone!
Thanks to the following for their generous donations
and support for our event. Your actions are helping
people in Manitoba who are living with kidney
disease:
We would also like to thank all of our sponsors
as follows:
ÎÎ Ace Burpee and Virgin 103.1FM
ÎÎ Cora’s Breakfast & Lunch
ÎÎ Corpell’s Water
ÎÎ Costume Alliance
ÎÎ Glenwood Community Centre
ÎÎ Harvest Bakery
ÎÎ Let’s Talk Science (University of Manitoba)
ÎÎ McDonalds Canada
ÎÎ On The Town Sounds - Derek LeNabat
ÎÎ Re/Max
ÎÎ Vickar Automotive Group
ÎÎ Wendy’s
ÎÎ The Winnipeg Free Press
Food and beverage sponsors
ÎÎ Kuiper’s Family Bakery
ÎÎ Party Professionals
ÎÎ Sobeys
ÎÎ Superstore
ÎÎ World of Water
Media sponsors
ÎÎ Westman Communications Group
ÎÎ 94.7 StarFM
ÎÎ CKLQ880
ÎÎ 96.1 BOBFM
ÎÎ 101.1 The Farm
Brandon
Event sponsors
ÎÎ Cando Rail Services
ÎÎ Guild Insurance Brokers
ÎÎ Murray Chevrolet
ÎÎ Millco Steel
ÎÎ Rolling Spokes
On September 20, the Kidney Ride, Glide, Stride
happened at the Westridge Community Centre. The
event raised more than $9500 to support kidney
health in Manitoba.
10
A group of supporters gather at the Winnipeg KRGS on September 13
A group of supporters gather at the Westman KRGS on September 20
11
"I
'm all about preventing illness and promoting
health, so I thought this was a good opportunity
for me to help others."
It's a demanding program, but the 25-year-old
Maples resident still makes time to volunteer at
kidney screening clinics organized by the Kidney
Foundation of Canada's Manitoba branch.
The clinics provide simple tests and education that
help people detect chronic health problems in the
early stages, including issues such as kidney disease,
heart disease, stroke and Type 2 diabetes.
Almazan has helped at four clinics since she first got
involved this past September.
'I'm all about preventing illness and promoting
health, so I thought this was a good opportunity for
me to help others'
"I have a passion for nursing, and I like helping
others," Almazan said. "I'm all about preventing
illness and promoting health, so I thought this was a
good opportunity for me to help others."
Photo of Marlenne Almazan by Phil Hossack/Winnipeg
Free Press
Many of the people who visit the clinics are
Aboriginal and thus at a higher risk of getting the
diseases the clinics test for.
Caring for others nurse's
passion*
"It's gratifying for myself to help others, and it's
nice to think that I could be helping someone from
getting these illnesses," Almazan said.
She describes a screening clinic at Siloam Mission as
being particularly meaningful.
Volunteers at screening clinics
A large group of people from a variety of
backgrounds and cultures, most of them homeless,
visited the clinic the day Almazan was there.
By Aaron Epp
Marlenne Almazan has always enjoyed caring for
others, so when she graduated from high school,
pursuing a career in nursing was a natural next step.
"I noticed they were very appreciative of the clinic
itself," Almazan said. "It was very interesting to work
with the people and talk with them."
After working as a surgical nurse at Health Sciences
Centre for two years, Almazan is now studying to
become an intensive-care unit nurse.
Melanie Ferris, who works as the kidney health
and communications manager at the Kidney
Foundation's Manitoba branch, says these clinics are
important because the symptoms of kidney disease
only present themselves at the disease's later stage.
Marlenne Almazan is studying to become an
intensive-care unit nurse and volunteers at kidney
screening clinics.
12
If people are screened, they can catch the disease
early and take steps to slow its progression.
Ferris adds Manitoba has the highest rate of endstage kidney disease in Canada, and Manitobans
suffering from kidney disease withstand the secondlongest wait time for a kidney transplant -- an
average of 5.5 years.
The Kidney Foundation has partnered with the
Heart and Stroke Foundation in Manitoba and the
National Aboriginal Diabetes Association to create
a new program that will send the mobile screening
clinics to Aboriginal communities in all areas of the
province.
Faith Konitz and her family in Summer 2015.
The aim is to help First Nations, Inuit and Métis
people get better access to health services and to
provide culturally appropriate health-education
workshops to individuals.
A Test of Faith: Supporting a
child with a chronic disease
“Try to give them as normal a life as possible,” advises
Faith Konitz’s mom Sarah. “Yes, they have an illness
but that’s not the deciding factor of who they are.
Just try to help them live life to the fullest.”
At the end of July, the RBC Foundation announced
it will provide $225,000 over the next three years in
funding support.
This will allow the three charities involved to provide
30 clinics and education workshops to communities
free of charge each year.
“We’ve really just learned, enjoy every day. Every
day is a gift and it could be gone just like that. Live
life to the fullest,” Sarah says. “Take time for yourself
and for your spouse and your other kids. It just falls
into trying to have as normal a life as possible. I don’t
know how people who don’t have a support system
do it.”
The Kidney Foundation is currently looking for
volunteer nurses and pharmacists from across
Manitoba to assist with the screening clinics.
Ferris points out the foundation offers travel
opportunities to remote locations throughout
Manitoba, which is great if people are interested in
seeing more of the province.
“It’s been hard on David and I. It’s been hard on the
other three kids. We have to keep doing special
things with them and for them. It can’t be easy for
them.”
Anyone interested can contact her by email at
[email protected].
David and Sarah’s families, as well as their church
family, have all been a support to them.
"A lot of times, people have just not learned about
these diseases," Ferris said. "These clinics are an
accessible way to reach people."
Republished with permission from the Winnipeg Free
Press print edition August 10, 2015
Faith Konitz in September 2013.
13
My Surprising
Dialysis Journey
By Allan Wildman
This is a love story, sort of.
Although it certainly didn’t start
out that way.
In 2010— five years ago— I was
62 and retired. I was told I had 8%
kidney function and would need
something called “dialysis”. I was
told this was a result of taking the
antirejection drug Cyclosporine
for 8 years. This had been
prescribed to me following a liver
transplant (cancer) in 2002.
This news was a mind-numbing
shock to me. I had been seeing
hepatologists regularly for 9 years,
but had no idea I was heading
toward kidney failure and this
thing called “dialysis.”
Dialysis— to me— meant going
to a hospital 3-4 times a week,
sitting in a chair for several hours
hooked up to a machine. This was
a prospect my mind could not
somehow compute. The idea of
travelling to some distant hospital
at least three times a week and
sitting in a chair for hours just
didn’t seem doable to me.
What about the time and expense
(120 miles round trip to Winnipeg,
3 times a week)? The logistics of
the whole business was too much
for me.
My mind began working overtime
to find some kind of alternative
to this inconvenient gamechanger. I was briefly relieved and
comforted by the allure of denial
and the thought that I didn’t
have to really do anything I didn’t
want to do. I didn’t have to travel
anywhere or sit in some chair for
hours if I didn’t want to. Nobody
could make me. It was a matter of
choice; it was that simple. Mind
over matter. I had solved the
problem… for now.
Kidney failure, however, was an
accurate diagnosis for me. The
relief I felt from denying or trying
to ignore the diagnosis soon
gave way to other revelations. I
got sicker. In a hurry, it seemed. It
got harder to look away from the
situation. Denial— while briefly
comforting— had its limits.
14
Then the gradual emergence of
the question I had no answer for:
“What have I got to lose by trying
dialysis?”
Previously I had thought travelling
hundreds of miles weekly and
vegetating in a dialysis unit had
no place in my production-driven
life. Then it became clear to me
dialysis wasn’t just a question of
“yes” or “no.”
It involved another question,
basically, “Do I want to live… yes
or no?”
If I wasn’t “vegetating” in a dialysis
unit— getting treatment— then
I would be “vegetating” at home,
getting sicker and sicker. So it
was, that I had no answer for the
question, “What have I got to lose
by trying dialysis?”
A kindly nurse at the nephrology
intake department gave me a
binder and several pamphlets
explaining the rigors of dialysis.
She also prophesized, “You are
going to meet a lot of wonderful
people on your dialysis journey.”
I remember thinking “Yeah right!
How wonderful…and it will get me
out of the house too. Why didn’t I
start this sooner!?” No. The idea
of having a “wonderful” dialysis
journey didn’t present as even a
remote prospect to me.
Getting my catheter
The first dialysis event was getting
a central line catheter inserted
into my jugular vein. This was to
allow access to my blood so it
could be filtered.
I felt more than a little trepidation
and anxiety at the prospect of this
procedure. Turned out it was more
or less a non-event. It was very
quick and painless. Fentanyl did
its job.
The resultant catheter protruding
from my neck was more like a
bowtie— neither painful nor
uncomfortable. Not exactly a
compelling fashion statement, but
it provided life-saving access to
my blood so it could be filtered.
First treatments
My first treatments were at the
Health Sciences Center and
the nearby Sherbrook facility
in Winnipeg. The primary
challenge from the beginning
was transportation to and from
Winnipeg 3 times a week (120
miles round trip). This was
basically an all-day event when
everything was factored in,
including the 4-plus hours spent
in the hospital.
These were not easy times for me.
Kidney failure and its rapid onset
basically turned my life upside
down and inside out. My time
really wasn’t mine anymore. To
begin with, I felt lousy and weak
most of the time. Now I had this
commitment three days of the
week— like having a job. I was not
a happy camper.
At one point I proposed having
just 2 treatments a week instead
of 3. Seemed to be a reasonable
compromise to me. This would
also free up a spot for another
patient. Needless to say the
reaction to this proposal was less
than enthusiastic.
Apparently I would benefit
from more (not less!) dialysis.
My kidneys, after all, had been
working 24/7, and now a machine
was doing that work only a total
of 12 hours a week. Enough to
sustain life but hardly ideal. So,
no. Having less dialysis was not a
reasonable proposal.
Nevertheless, I somehow
expected these treatments to
make me whole again… “cure” me
or “fix” me. After all, that had been
my experience for 60 plus years;
you have an ailment of some kind,
you get some kind of treatment,
you get better. You get well.
Life goes on. But not this time,
apparently.
It took me some time to digest the
reality that I wasn’t going to get
“well” again—at least not without
a kidney transplant. That had been
ruled out due to complications
from my previous liver transplant.
I was not at all pleased with the
state of affairs. Regrettably, I
have to admit to some misplaced
anger, shouting, and stomping
around. It was like I somehow
expected the nurses to do their
job and make me well and this
just wasn’t happening.
After several months, a bed
became available at the Pine
Falls Dialysis Unit and I was given
this spot. This is a smaller unit
with only six beds, but only a
25-minute drive from my home.
A shorter commute and a smaller
unit were huge improvements to
my life. It was like joining a small
“dialysis family” — familiar and
supportive.
However the rigors of creating a
fistula, growing it, and breaking
it in were still before me. Freezing
is not used at Pine Falls so it was
a matter of getting used to the
needles— cold turkey.
The needles looked like the
biggest needles I had ever seen—
more like knitting needles. First
one needle was used, then both,
then the central line catheter was
removed from my neck (again, a
painless procedure thanks to the
properties of Fentanyl).
15
Dealing with depression
and hopelessness
For several months, still not
accepting my circumstances or my
“new normal”, I felt alternatively
depressed and hopeless and
sometimes just angry about
everything. I couldn’t see how I
had much of a future. I knew also
that kidney disease is chronic
and progressive (in the wrong
direction).
This state of mind persisted for
several months. Occasionally
I would go on some kind of
shouting binge triggered by a
perceived lapse in “the standard
of care” I was receiving (i.e. getting
my fluctuating dry weight wrong
or “taking me off” a few minutes
early).
I also kept an eye on my daily
progress chart and my final
clearance numbers. If my
clearance number was lower
than previously, I knew it meant
somebody wasn’t doing their
job and I let them know it.
Their mumbo-jumbo technical
explanations didn’t persuade
me (right away). The nurses, for
their part, maintained a steady
professional rudder in the face of
Hurricane Allan—ever cheerful,
positive, and patient— confident I
would eventually “get it”.
My new normal
As the months (and years) went
by I became habituated to the
rigors of dialysis and my “new
normal.” As I felt better and
became stabilized, it seemed
like everything around me got
better too. The nurses were doing
their jobs. The commute to the
hospital even seemed shorter…
Now I know that didn’t change,
so I entertained the possibility
that perhaps it was me and my
perspective that had changed.
I finally appreciated that the
nurses were “there for me” and in
fact, had always been “there for
me” — even when I didn’t realize
it. The one set of footprints behind
me was because they had been
carrying me.
Generally I’ve come to look
forward to my thrice-weekly
dialysis days. If this is my “job,”
then it has become a well-paying
job. I’ve also come to anticipate
my dialysis days in a positive
way, because on the way to the
hospital I stop at a local service
center for some kind of decadent
treat (hot dog, ice cream, chicken
breast). I’ve learned that if I’m
going to cheat on my strict renal
diet, the time to do it is just before
dialysis.
Another positive on my dialysis
days is that I anticipate stopping
at a local restaurant for a delicious
meal on the way home. So it is
three times a week that I look
forward to these “feel-better
sessions.”
Much like the little white mouse
in the lab experiment pushing
the lever to receive a “reward”,
I’ve become conditioned to
experiencing dialysis in a positive
way because of the “rewards” I
receive.
Naturally I feel better when the
toxins have been filtered from my
blood. But it’s also the positive
feelings that flow from interacting
with positive, supportive, cheerful
people on a regular basis. The
heated blankets are welcome
too— especially the one they put
over me when I’m taking a nap
(without asking).
I often reflect on the words of
the intake nurse, “You will meet a
lot of wonderful people on your
dialysis journey.” She was one of
the “wonderful” people she was
talking about. Five years down the
road her crystal ball predictions
for me were 100% accurate— I
have indeed met some “wonderful
people” on my surprising dialysis
journey.
Manitobans for
Presumed Consent
Increasing organ and tissue donation
Manitobans for Presumed Consent
This group of volunteers continues to meet and move forward with strategies to help raise awareness about
improving organ and tissue donation in Manitoba.
If you would like information about presumed consent, and what you can do to help in our province, visit
the following:
ÎÎ Facebook group: Manitobans for Presumed Consent
ÎÎ Website: https://manitobansforpresumedconsent.wordpress.com/
16
Update on
the Healthier
Together Program
By Melanie Ferris
On July 31, the three organizations
involved in the Healthier Together
Program held a media event at The
Forks to announce the support of
the RBC Foundation for our new
program. The Kidney Foundation
of Canada, the Heart and Stroke
Foundation of Canada, and the
National Aboriginal Diabetes
Association are all thankful for the
support.
The RBC Foundation has committed
$225,000 over the next 3 years to
help us deliver the program. The
event was opened in a traditional
way with a prayer, a smudge, and a
drum song. Speakers talked about
how this program will make a
positive impact in First Nation, Inuit,
and Metis communities throughout
the province.
The event was also a great time for
our major supporter, Mr. Larry Vickar,
to unveil a gift to the program—a
2015 Chevrolet Suburban. This new
vehicle will help ensure our staff get
safely to clinics across the province.
Communities and organizations
were invited to be part of the
program. Applications were due
by September 18. The applications
are currently being reviews, and
an announcement will made by
the end of the year about which
communities will be receiving the
program.
To stay up to date with the
Healthier Together Program, you
can join our Facebook group
(HealthierTogetherProgram),
follow us on Twitter @HT_Manitoba,
or check out our website at www.
healthiertogethermb.ca.
17
Kidney Cars
Stay in Touch
Do you have an old vehicle or
motorcycle that you are not using
anymore? Are you tired of seeing
it take up space in your yard or
garage?
Get our latest news through:
ÎÎ Visiting our website at
www.kidney.ca/mb
ÎÎ “Liking” us on Facebook
(KFOCMB)
ÎÎ Following us on Twitter
ÎÎ Following us on Instagram
ÎÎ Signing up for the
electronic version of our
newsletter
ÎÎ Email your request to
get an email version of
this newsletter to mferris@
kidney.mb.ca
Did you know that Kidney Cars can
provide you with a free tow AND a
tax receipt? All you need to do is call or connect with
us via our website, and we’ll get you started with your donation.
In Manitoba, call:
In Winnipeg: 204.257.2277 (CARS)
Toll-free: 1.866.740.2277 (CARS)
You can visit our
Kidney Cars website for more information: www.257cars.ca
The Kidney Foundation of Canada
– Manitoba Branch
DONATION FORM
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Please send your completed form and payment to the address below.
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