KATHY Nolan has a terminal illness.

All the Hervey Bay woman wants to do with the time she has left is see the world, travel and volunteer in her beloved community.

Instead, in the absence of a life-changing portable oxygen machine, she's trapped at home.

Speaking to the Chronicle, Kathy readjusts the small clear tube tucked behind her ears, running under her nose.

The tube is connected to a machine which circulates oxygen directly to her lungs because Kathy's body can no longer filter out the toxic carbon monoxide in her blood.

This device is both her saviour and her jailer.

The tube is connected by extension to a large filter machine which sits plugged into the wall in Kathy's spare room.

"I am tied to the house and cannot go out," she said.

"I have literally not left this house for almost two years except for medical appointments."

Kathy was eagerly waiting for the National Disability Insurance Scheme roll-out in the hope she would be covered for a portable machine.


Kathy Nolan needs a portable oxygen machine so that she's not house bound.
Kathy Nolan needs a portable oxygen machine so that she's not house bound. Alistair Brightman

"I had my planning meeting and everything went wonderfully. They were wonderful to me, they gave me everything else I asked for except for a portable oxygen machine.

"In fact they even gave me, on top of my in-home care which is 35 hours a week, 12 hours a week of care specially to go out into the community and interact."

Kathy was previously covered for large portable oxygen tanks, similar to what divers use, which last about one and a half hours at her consumption rate.

However, the rule is you can only have three of these tanks at a time, which limits the amount of time Kathy can stay away from her home.

"Funnily enough the respiratory specialist is in Brisbane but I cannot get to him," she said. "If I took all three cylinders it wouldn't even last me the trip down to Brisbane."

The machine Kathy is after weighs 2.3kg and will attach to the back of her wheelchair with an extended battery life - it can last nine hours.

"You can also charge it off the car while you are driving.

"The basis of everything under the NDIS is it has to be reasonable and necessary."

So when the NDIS said a portable oxygen tank was not necessary, Kathy questioned it.

"For whatever reason having oxygen to get out of the house is not reasonable or necessary," she said.

"It only costs $5000 and I would gladly not have anything else but it - unfortunately that's not how the NDIS works. You can't swap."

Southern Cross Support Service, the agency managing Kathy's care, went into bat for her to appeal the decision.

"I went to the specialist at the hospital and got him to write a letter but still nothing.

"My care manager went to the RSL to see if we could apply for a grant but they said they probably cannot fund the whole thing.

"We thought talking about it and letting people know we might be able to make up the difference.

"I don't have a long time left and it is so important that I get out and do what I want to do before I die."


Kathy Nolan needs a portable oxygen machine so that she's not house bound.
Kathy Nolan needs a portable oxygen machine so that she's not house bound. Alistair Brightman

Kathy's partially amputated foot is a tell-tale sign of Charcot-Marie-Tooth muscular dystrophy.

There are 56 members of her extended family with the genetic condition and unfortunately for Kathy, she's severely affected.

"Some people who have it you wouldn't even know they have anything wrong with them, and then there is me on the other end of the spectrum," she said.

After a lengthy health battle which included cancer and muscular dystrophy, Kathy is in need of support.

"I am in Type 2 respiratory failure - it is terminal," she said. "So you basically keep recurrently getting pneumonia."

Kathy hasn't been given an exact timeframe, however it could be as little as two years.

She has a degree in psychology and over the years has worked with a lot of organisations in the community.

Her semi-colon tattoo on her hand is a tribute to her work with suicide intervention.

"I probably saved at least 100-200 lives within this community. I set up Harmony House the contact centre, I have done a lot with Lifeline, Centacare.

"It goes against the grain for me to ask for help but this is too important."

A Go Fund Me page has been set up for Kathy and can be accessed here: http://www.gofundme.com/help-kathy-breathe-easy.