Second Chance At Life Thanks to Kidney Conversations
Second Chance At Life Thanks to Kidney
Conversations
It is
essential for people suffering kidney failure to talk to
their whānau and spread awareness that they will need a
kidney donated to them at some point.
Anybody in good
health with two normal kidneys may be able to give one of
their kidneys. A potential donor should have a genuine
interest in donating.
Here are two stories about
Northland siblings and friends giving their loved ones a
second chance.
“You’ve got part of me in
you”: Julie’s gift from her fearless
friend
Julie Bracey made it 50 years before her
kidneys began to fail. When they did fail, Julie found that
a friend in need, is a friend indeed. That friend was Diane
Carre, who kept setting Julie off on endless fits of
laughter as the jolly duo shared their story on a warm
autumn morning at Whangarei Hospital where Julie was coming
in for a routine monthly blood test.
Three years after
Diane gave part of herself to help someone who was initially
just a work friend, and later became a best friend after the
kidney donation.
Julie was born with duplex kidneys, a
developmental condition in which one or both kidneys have
two ureter tubes to drain urine, rather than a single tube.
This caused Julie problems with urinary reflux as a child,
Julie says, but it wasn’t until later in life she found
out she needed a transplant. It was a routine blood test at
age 50 that indicated Julie’s kidney filtration rate had
dropped to a worryingly low 25 percent.
When her kidney
function dropped under 15 percent in 2008, Julie realised
either dialysis or transplant would be required.
“I
was told I’d need the transplant. The news hit me very
hard, out of the blue. It was difficult for my family, they
didn’t take it on board, didn’t think it was as serious
as it was because I looked so healthy.”
It was an
offhand comment from Diane during their work as bakery
merchandisers which prompted the lifesaving conversation.
“I went to work and said my granddaughter was born with an
extra kidney,” Diane recalls, “And Julie said ‘Ooh –
can I have it?!’ I didn’t know until that comment at
work that she even had kidney problems. I asked if I could
be tested [as a potential kidney donor] and she didn’t
think I was serious.”
Diane contacted Northland DHB’s
Renal Unit and commenced testing to be cleared to donate,
which was a promising start. Ironically Julie’s kidney
health managed to improve and she was de-prioritised for a
transplant – although surgeons still encouraged Diane to
give her kidney to one of the 600 people around the country
who at any point in time need a kidney donated.
“I was
ready to donate and I thought, altruistically, it would be
nice to give to someone else,” Diane says, “But I kept
putting them off. I’m glad I waited. I would’ve felt
stink if I’d given it to someone else!”
It would be
six years of exhaustion, restrictive diet and “not feeling
quite human” before Julie’s kidney function deteriorated
again. Diane at that point hadn’t spoken to Julie in
years, but got a text message out of the blue asking family
and friends to come to a meeting to re-discuss renal
replacement options including transplant.
“You were
always on board, but it was hard to accept the offer,”
Julie tells Diane.
The National Renal Transplant Service
operation almost went ahead in early 2014 - but there was an
unexpected setback.
“The night before the transplant,
a doctor asked me if I’d had any blood clots in my family
medical history,” Diane says. “I recalled my mother once
might have had a blood clot, and the doctor straight away
said ‘You can’t do the transplant until we do some more
tests.’ I said to them, ‘Can’t we do the clot test
right now?’ But it wouldn’t be completed for up to one
week. I felt lowest of the low. I felt
terrible.”
However, Diane had a strong feeling that her
mother’s blood clot was merely hospital-induced so
finally, after a week of tears and stress, clear tests gave
Diane the green light to undergo surgery on June 13 2014.
“It was Friday the 13th, but it’s always a lucky day
for me,” Julie laughs.
People receiving a kidney have
the organ placed in the lower abdomen on the front side of
the body. The operation took no more than four hours to
remove Diane’s kidney and donate it to Julie.
“It
was all about Julie after that,” Diane says. “She passed
urine straight away, it was incredible.”
Julie says
she was given her life back again by her friend. The two
collapse into laughter again as they share an in-joke about
Julie taking ‘Lefty’ – the nickname for Diane’s left
kidney – on a cruise to Rome.
It’s the little things
that show the difference an organ donation can make, Diane
says.
“What got me the most was on our way home from
hospital, Julie stopped and got tomato soup. She hadn’t
been able to eat tomatoes, avocadoes or oranges for years.
That made me emotional: I hadn’t taken for granted you
couldn’t eat those. It’s because of their high potassium
– potassium goes to the heart if kidneys can’t process
it and could cause a heart attack.”
Diane insists the
transplant left her with few complications and she was back
at work within three weeks. On weekends she enjoys a kayak
gifted to her by Julie’s grateful family and remembers the
poignant comment of one man in an Auckland waiting room who
told her, “I’ve always wanted to meet a real life hero
like you.”
For anyone who has a family member or close
friends likely to need a kidney transplant, donor Diane has
a simple message: start the testing now to get medical
clearance to donate, because there are many tests to get
through. “There are blood tests, chest x-rays,
cross-matching, mammogram, smears and counselling to make
sure you’re 100 percent healthy. If you know someone in
the future will need a transplant, start testing right
away.”
“My family love you to bits, you’re a very
special lady,” Julie says to Diane as they finish telling
their story.
“You have to say that,” Diane says,
“You’ve got part of me in you!”
Brotherly
Love Helps Tom Back From the
Brink
Whangarei-born and bred Tom Braithwaite
was – and still is – a man in the prime of his life. He
was travelling the globe and having adventures in exotic
locations when, at age 26, a routine medical check in London
indicated his kidneys were slowly beginning to show signs of
damage to the kidneys’ glomerular filters. Doctors
diagnosed Tom’s illness as IgA nephropathy, aka Berger’s
disease. Tom was warned his kidneys would eventually fail.
At the time, Tom had been running his own stonemason and
landscaping business in Western Australia. He returned there
after diagnosis, began taking a course of Prednisone for six
months to slow the disease, kept fit, watched his diet and
alcohol intake and carried on doing his best to live life to
the max.
When Tom arrived in Hawaii in June 2016 it was
found his kidney function had dropped from 17 percent to 10
percent. By the time he returned to Whangarei later that
month, his kidney function had dropped to 8 percent, his
blood pressure was perilously high and he was admitted to
hospital.
Tom had already begun having ‘The
Conversation’ with his brothers and closest friends. Now
that he was hospitalised and needed a new kidney imminently,
the conversation became far more urgent.
A dialysis
access line was put into Tom’s neck to enable
haemodialysis for a month. Haemodialysis is an invasive, but
lifesaving, process in which, for five or more hours a day,
three days a week, the patient’s blood is removed,
cleansed of toxins then put back in the body. Haemodialysis
left Tom feeling “completely wiped” after each session.
Tom then moved onto peritoneal dialysis for nearly 10
months.
Peritoneal dialysis meant bags of fluid were put
into Tom’s abdominal cavity and waste was drawn out. A
machine would complete nine cycles of peritoneal dialysis at
night while Tom tried to sleep. Unfortunately, Tom
experienced the awful side effect known as ‘restless
legs’. This is experienced by many with kidney failure
due to an imbalance of the body’s chemistry causing
painful muscle contractions. Added to this were the
emotional effects of being perpetually exhausted. Some
nights Tom could only sleep one hour, and would spend his
days grumpy and upset while still trying to enjoy fishing
and diving.
Tom put his brothers’ needs ahead of his
own and encouraged older brother Will to finish a tour of
South America before meeting him in Auckland to donate a
kidney.
While Tom’s amazing mates had offered kidneys
and endured testing, “I felt more comfortable receiving a
kidney from family rather than friends”, Tom says.
The
transplant went ahead at the end of March 2017 in Auckland.
Will was out of hospital within three days and walking 12km
within two weeks, while Tom was out of hospital within five
days. Today Tom sports a large scar on his abdomen.
Like
most recipients, Tom’s native kidneys are still marginally
operative, with his front kidney taking care of 70 percent
of the work.
The agonising restless leg syndrome
disappeared the day after the operation and Tom is pleased
to report he is back to spear fishing and can run again.
Today, age 34, Tom has a message for those affected by
kidney disease: “Look after your kidneys. They get damaged
by processed food with high sodium, fast foods, and many
painkillers, including Nurofen, are completely unsuitable
for people with kidney disease – but how many people read
that on the back of the packet?”
“The transplant was
hard to talk about. It’s a big thing, to give up part of
your body. I think the best way [to serve the needs of the
person with kidney failure] is for potential donors to
quietly get tested to see if they are suitable to donate. It
allows them to back out from donating without any
pressure.”
Recently, Tom was given another reminder
about how donating organs can change lives when his friend
Jeremy died suddenly of an aneurysm, aged just 36. Less than
one percent of people who pass away in NZ have their organs
successfully harvested for donation due to the complicated
set-up required to keep a person’s organs alive, but
Jeremy managed to save lives even in death.
“A person
from the organ transplant centre spoke at Jeremy’s life
celebration about how many people Jeremy saved,” Tom says.
“Jeremy donated organs which helped as many as eight
people – he donated his heart, lungs, both kidneys and his
corneas.”
“I’m living proof of what donating to
other people can do. It gives people a second chance at
life.”
Growing need for kidney
donors
“Currently 2370 people in New Zealand
require renal dialysis because they have end stage kidney
disease. The average life expectancy of a person on dialysis
is 4–5 years. 600 people nationally are currently on
waiting lists for a kidney transplant. There are never
enough kidneys donated by families of people dying in New
Zealand hospitals and only about half of the people on
national waiting lists will ever receive a kidney
transplant,” Live Kidney Donation Aotearoa says.
The
rate of kidney transplants in New Zealand is lower than
other countries. Please, if somebody in your family could
potentially benefit from a kidney transplant, have the
conversation today.
For further information please
consider discussing donation with your GP and /or contact
the Renal Unit, Whangarei Hospital.