Before Rebekah Henderson gets a new pair of lungs, she wants to pay tribute to the friends she lost to the same illness.
Henderson, who lives in the Auckland suburb of Three Kings, has been on the active waiting list for a life-saving double lung transplant since May 2016.
The 27-year-old lives with cystic fibrosis, an incurable genetic illness which causes the production of abnormally thick mucus that blocks the lungs. In 2015, she was diagnosed with respiratory failure.
Henderson has 11 intricate, brightly-coloured tattoos across her body, and is hoping to complete the last one before her transplant rules out her chance of getting tattooed again.
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She has started a memorial tattoo for three friends she lost to cystic fibrosis: a rose each for Josh, Amy and Steven are inked onto her forearm, along with their initials and the dates they died.
All of her tattoos reference cystic fibrosis, or ’65 roses’, as it is sometimes referred to.
Tattoos give Henderson back some of the control her illness has taken from her, she said.
“I can’t control what my body does from day to day, what meds I take, what my lungs are going to do, or anything else in my world, but I can control what ink I get: what design I want, where it goes and who sees it.”
A family friend has started a Givealittle page to fund Henderson’s memorial tattoos, raising $483 so far.
She’s hoping to create a full sleeve, including the memorial pieces and a tribute to her late nana. But time is of the essence.
Now that she is on the ‘active’ transplant list, it’s a waiting game. A new pair of lungs could come tomorrow, next month, or a year from now, she said.
And when the call comes, she has to be ready.
Most importantly, she has to be healthy enough to face recovery.
Henderson’s current lung function is between 15 and 24 per cent.
Imagine running in a massive race, and once you’re done you just never seem to be able to catch your breath – that’s what it’s like, she said.
“You’re always breathless, no matter what.”
So a life without oxygen tanks and nebulisers is exciting – no matter not being able to get tattoos. They are highly discouraged, in some cases prohibited, after transplants due to the high risk of infection.
“People forget tattoos are an open wound,” Henderson said.
No matter how sterile the process, a tattoo can make a person with cystic fibrosis vulnerable to infection – one which would take a lot longer to heal and further strain the person’s immune system, she said.
While being pre-transplant “kinda sucks,” Henderson has faith.
“It’s a dire situation, but let’s not all hit the panic button and start freaking out yet.”
As she waits for her new lungs she’s adding to her six-page ‘bucket list’ – all the things she wants to do post-transplant. Hiking, bungee-jumping, skydiving: you name it, she’s determined to do it.
Tattooing just won’t be on the list.
WHAT IS CYSTIC FIBROSIS?
Cystic fibrosis is the most common life-threatening genetic disorder affecting Kiwis.
According to Cystic Fibrosis New Zealand, 500 Kiwis have the illness. One in every 5000 babies is born with the condition and diagnosed with a heel-prick test during new-born screening.
About one in 25 New Zealanders carry the gene and won’t know this unless they meet someone else with the gene and have a baby.
It is a life-limiting and incredibly challenging disease which affects the person “every minute of every day in every way,” a spokeswoman for CFNZ said.