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.