Charlie Tipiwai has spoken three times about being the recipient of an organ from a deceased donor, but for the first time he spoke at a first of its kind transplant hui, to better inform Māori healthcare providers and influencers about organ donation.
The hui, on Wednesday, was held in Hawke’s Bay and was a first for New Zealand.
Hastings resident Tipiwai, 60, said the hui was a great way to inform and support patients/whānau who faced transplant conversations, or were on the receiving end of a deceased person’s organ.
“I had to choose between Māori medicine and Pakeha medicine. You have to have a strong belief in Māori medicine for it to work, I picked Pakeha medicine, and I am living proof it works.
“My journey started in 2009 when I was on dialysis for two years,” Tipiwai said.
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Dialysis has been used since the 1940s to treat people with kidney problems.
“At the time I was told not to put my head in the sand, and be unaccepting of the condition I was going through.”
Tipiwai was diagnosed with diabetes at age 24 after a lifetime of self-proclaimed bad habits including drinking, smoking and eating junk food.
“When I was young I thought I was invincible. I only took meds when I wanted to or remembered.”
He found it hard to accept his condition and was in a constant state of anger.
“I couldn’t work. I was angry. My attitude was anger. I kept asking why me?”
Tipiwai has seven brothers and six sisters and he said a majority of his brothers were diabetic.
“One of my brothers had a kidney transplant but died in his late 50s.
“I asked the doctor why and they said the kidney was not compatible with my brother’s body.
“I decided to live for both of us.”
He agreed to undergo an organ transplant from a deceased person.
“I was told my donor was brain dead. I had a second chance at life with a new kidney.”
He received the transplant in 2011.
“The transplant gave me quality of life. I am very grateful for the kidney.
“I learnt that you need to listen to your body, when it says rest you rest, you don’t keep pushing it till it breaks.”
Hawke’s Bay District Health Board transplant co-ordinator Merryn Jones, who is of Ngāti Rakaipaaka descent, spearheaded the hui.
Jones said organ donation was an issue that disproportionately affected Māori due to barriers which she believed could be overcome with better education and awareness.
“Cultural values, concern for wellbeing of potential donors, genetic issues within families, access to primary care, distrust of the medical system, poor health literacy, or financial problems to getting care, are just some of the barriers,” she said.
Data from the Australia and New Zealand Dialysis and Transplant Registry also showed “disturbing statistics” that painted a picture of inequity in accessing healthcare.
Māori represented nearly 79 per cent of the dialysis population in Hawke’s Bay and yet, of the 187 kidney transplants in New Zealand in 2017, only 23 (12.3 per cent) of the recipients were Māori.
Jones said she hoped future statistics could be turned around by working more closely alongside Māori health services and influencers (ie, kaumatua).