WHEN KIDNEYS HAVE DONE THEIR DASH

Part of Claire Beckett’s job as a Renal Clinical Nurse Specialist is as a Donor Liaison Coordinator. Whether you’re receiving or donating a kidney, she takes us through the ins and outs of donation.

Claire Beckett works with patients who have chronic kidney disease. She supports them with education on dialysis, begins dialysis care, assesses to see whether they are well enough for transplant, and offers conservative end-of-life care.

Having worked in the area of diabetes care for 31 years, Claire says she finds her work challenging, and she enjoys the relationships she has built up with patients over the years. UK-born and trained, she and her husband Neil, who has type 1, made the move to Aotearoa New Zealand 19 years ago.

Claire Beckett

She sees the same people she met on her first day here. She says she’s seen them get married, have families, and even become grandparents. When patients die, she has been there too, providing support.

Part of her role as a Donor Liaison Coordinator takes her further into people’s lives. This is where she coordinates kidney and pancreas donations for her patients within New Zealand and sometimes internationally.

Most people have a longer, better life with a kidney transplant than with dialysis.

FIRST STEPS

Patients in need of a kidney transplant are first referred through their GP and endocrinologist. Donors may be living or recently deceased, a stranger or a relative, and are matched with receivers through their blood type. Depending on suitability, patients can wait an average three to four years for a kidney from a deceased donor. In New Zealand, we usually transplant from slightly more live than deceased donors.

A living donor must be over 18 years old and is assessed for their compatibility and evaluated for medical fitness –they need to be healthy and well enough to handle the surgery and recovery time. The surgery itself takes up to four hours and recovery is a good six weeks. For the recipient, there is a similar recovery period. Medications will prevent rejection of the new organ, and these are taken for as long as the kidney works.

Many factors, such as severe heart or lung disease, or being overweight, can eliminate a patient, both as a candidate as well as a donor – that is, unless the donor can make some lifestyle changes.

Claire cites the example of a wife who wanted to donate to her husband. However, she had high blood pressure, weighed 120kg, had a BMI of 36, and, when her HbA1c was tested, it fell into the glucose intolerance prediabetes group. All these things would rule her out but not permanently. Claire told her the things she needed to improve were doable and to go and talk to her GP.

A year later, the would-be donor returned. She had increased her exercise and lost 30kg. Her blood pressure, cholesterol and HbA1c had lowered and she felt much better. Claire says not only had this donor avoided health complications in the future, including type 2, she was now able to donate to her husband. Claire says it will hopefully happen in the next four months.

Claire says they get a lot of enquires for transplants when someone is on dialysis. This is when the illness has become visible to the outside world and when friends, neighbours, and work colleagues start asking questions about their state of health.

Heartbreakingly, by then it’s often too late. These patients are not going to be fit for transplant. ‘We want them early,’ Claire reiterates.

CARE FOR LIFE

The team also works with donors around the globe. The recipient is assessed here, and their information is sent to a transplant unit in whichever country the donor lives. The donor usually stays put, and the recipient flies over and receives the new kidney. Usually by the time six weeks is up they’re well enough to fly back. Then a local New Zealand team takes over the care.

Claire says they expect everything to be rejected until proven otherwise in first few months of transplant, with the first two to three months being the highest risk times for rejection because the immune system knows there’s something there that shouldn’t be. But the team works hard to make sure there isn’t any opportunity for rejection to start.

The odds are pretty good though. Ninety per cent of living and 95% of deceased donor transplants are still working by the end of one year. The numbers drop slightly as time goes on. You’ll get an average of 20 years from a transplanted kidney, and, for the donor, they can continue to live a long life with only one kidney.

Donors are followed up in the first six weeks, then three months, then annually for life.

Claire says they are particularly stringent with monitoring blood pressure, because someone with only one kidney has a higher disposition to being hypertensive. If the medical team does notice a drift, they can preemptively start blood pressure medications to slow down any problems.

BE WELL ENGAGED WITH HEALTH

Claire says well-informed people who are engaged with the medical system and have a good relationship with their GP and renal doctor have the most success with transplantation. She says she has patients coming early, as a pair, and telling her, ‘My kidneys are going to be failing and, when I’m ready, this is my friend Sam who has offered to donate a kidney. How do we get this started?’

Then there are the less wellinformed; those who may not have engaged with health so well in the past. They might come from a family where a couple of aunts and a grandfather all had dialysis and died on dialysis.

Claire says this segment of the population is often unwilling to trust what medical professionals say. Unfortunately, these are the groups that are also overrepresented in the dialysis population.

WAIORA

Another population that is overrepresented in failing kidney health is Māori and Pasifika. Māori are 2.5 times more likely to have type 2 diabetes than their Pākehā counterparts, and Pasifika peoples double that. Adding to that, Claire says that unfortunately they are referred to diabetes services later, so that ‘by the time they’re sitting in front of me, talking about transplants, quite often a lot of those complications might make it more difficult for them to get a transplant’.

Claire tries to reach out to patients before they start feeling unwell and have to start planning for dialysis.

She shares her donor liaison role with a colleague, and the two of them are working on strategies to connect with Māori. Each year, they attend Te Rā o te Raukura in Waiwhetū, near Wellington. This annual whānau-oriented community festival has a focus on health, education, culture, youth, and entertainment.

‘We have a table in the health stand, and we talk about kidneys. We talk to kaumātua about how to better engage people to talk about transplantation and renal disease.’ She calls it ‘getting donation out in the communities’.

There is a misconception that Māori are less likely to donate than other races due to spiritual beliefs. There are a number of reasons why there are fewer transplants from and to Māori. Tissue matching is one issue. A concern for family is another. Patients might turn down offers of kidneys because they worry more about the wellbeing of their loved ones than their own personal health.

But the theory of transplant is not foreign to Māori. We only need to look at the legend of Maui who fished up New Zealand using his grandmother's jawbone. Instead of tapu, organ donation is the ultimate koha.

‘Honoa te pito ora ki te pito mate – Graft the live shoot to the ailing shoot.’

Historically, a kumara shoot that appeared to be struggling would have another shoot planted in the same mound. In the context of this discussion, the proverb refers to the grafting of a healthy kidney to support a failing kidney, thus promoting such a practice as tikanga Māori.

SOURCES

https://www.health.govt.nz/publication/ compensation-live-organ-donorsinformation-pack

https://www.health.govt.nz/system/files/ documents/publications/compensation-forlive-organ-donors-information-pack-may21.pdf

https://www.health.govt.nz/system/files/ documents/pages/maori-pacific-attitudestowards-transplantation.pdf

You might have ticked ‘donor’ on your driver’s licence, but you also need to follow it up with a conversation with your families. When families don’t have that feel for what you want, they struggle with the decision and that’s when donation doesn’t happen.

The Ministry of Health compensates a live donor for their loss of earnings. New Zealand was the first country in the world to offer this, with the concept being that donors should not be out of pocket but at the same time not financially profiting. The donor will receive 100% of their calculated loss of earnings for a maximum of 12 weeks from the date of surgery. This covers tax, student loans, child support, and KiwiSaver. You just have to arrange unpaid leave with your employer.