“It’s like being on a roller coaster. You want to get off but you can’t. It’s just a horrible ride. You’re living your worst nightmare.”
Murray Milgrew is describing his journey with kidney disease. He never suspected swollen legs after drinking a beer was a sign of IGA nephropathy.
A trip to the doctor and a biopsy confirmed he had the chronic disease, and Murray went from having 99 per cent kidney function to four per cent in just eight weeks.
The Tauranga man says this is an incredibly quick decline. The disease normally progresses over 10-to-20 years.
“It gets to the stage where you have to do dialysis or die,” he says. “In the end, you’ve got no choice.”
IGA nephropathy is caused by deposits of the protein immunoglobulin inside the filters (glomeruli) in the kidney. The protein prevents the filtering process.
Dealing with dialysis
The 55-year-old quickly started haemodialysis at Waikato Hospital, and now has an automated peritoneal dialysis machine that he connects to for nine hours each night.
Murray was crippled with anxiety for the first six months of using the machine and struggled to sleep.
“It’s like a printer going all night next to the bed,” he says.
“It gives you a claustrophobia because once you’re on the machine you’re stuck there.
“I hated it. I was almost scared of the dark. I’d hate the night time because it was like torture.
“Sleeping should be a nice peaceful thing.”
He would stand at the window hoping for the sun to come up.
“I could deal with the day, but I just couldn’t deal with the night times.”
Murray has worked through this anxiety but still struggles to sleep.
He and his partner Sandy Fenton had been together for a year when he was diagnosed. Sandy says she is strong and thought she would be fine supporting Murray, but it got really tough. She encourages others to get help and talk to people.
Loss of identity
Murray was a fit personal trainer up until his diagnosis in 2018. Now he works part time as a boxing trainer.
“It’s a test of what you’re made of because you lose your identity, who you are. I feel like I died and the person I was, I couldn't be anymore.
“I used to be quite fit looking. That was who I was - always had been - and then you lose it.”
At the height of his illness, Murray was so weak he couldn’t walk the few metres to the letter box.
Now he is fit enough to walk up Mauao but gets very tired and is unable to work full time.
There are also other restrictions. Murray can only drink one litre of fluid a day. He must avoid salt and foods high in sodium, as well as foods high in potassium and phosphorus such as bananas, oranges and avocados.
“It just kills your social life,” he says. “You can’t go out and have a beer with your mates.”
A new life
Murray is on the organ donor waiting list for a suitable kidney – a kidney that would give him his life back.
“I’d get my freedom back,” he says. “I’ll have a whole lot more energy. It’ll be a new life with someone else’s organ in me.”
Sandy says people need to have a conversation with their family about their wishes around organ donation.
She works as a healthcare assistant in the ICU and says a lot of people state they want to be a donor on their licence, but when the time comes their family says no.
Sandy understands it’s a difficult decision and a really stressful time for people, but the gift of organs can change so many lives.
“If you give your organs, then that person continues to live on in a way,” she says
One donor has the potential to help up to ten people through the donation of organs and tissues.
In 2020, because of the generosity of 64 deceased organ donors and their families, 186 people were able to receive life-changing heart, lung, liver, kidney and pancreas transplants.
Organ Donation New Zealand national clinical lead Dr Jo Ritchie says although it can be uncomfortable talking about death, they encourage everyone to have a conversation about donation with their whānau or close friends.
“That way, if you die, the conversation may be easier for your family as they will know your wishes,” says Dr Ritchie.
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