Being chained to a dialysis machine is no way to live. Marilyn Velonas will be the first to tell you that. She spent five and a half years attached to a machine that she had at best mixed feelings for. She remembers the waiting, attached for six hours to the whirling machine every second day, but at the same time, that same machine was her lifeline.
This is life for a person on an organ donation waiting list.
For the sick, getting time is the best you can hope for, and for many, dialysis is a godsend.
Marilyn was diagnosed with a rare autoimmune disease called IGA nephropathy.
“When I was diagnosed, the doctor said to me ‘the worst case scenario is you’ll end up on dialysis, but that won’t be till 15, 20 years now, but more than likely it won’t happen’,” she tells Neos Kosmos.
“Within eight years I was on dialysis.”
At 41, with a daughter going through high school, things could not have come at a worse time.
Finding six hours every three days, then every second day as time went on, to sit attached to a machine was debilitating. Any sense of normality went out the door.
“My life had to be planned around dialysis,” she says.
“You can only do so much, but I said I’m not going to let this take over my life.
Marilyn managed two overseas trips during her almost six year stint on dialysis, and has fond memories of little weekends away. This was only possible thanks to very detailed planning in between treatment and heavily regimented hospital trips.
The only way Marilyn could find some sort of normality was through the misfortune of another. Her lifesaving kidney came after a young man lost his life in a traffic accident. The heartbreaking decision for a mother to say goodbye was made easier by the fact that her son gave life to ten more people, effectively a second chance.
That is the true gift of organ and tissue donation.
Surprisingly, migrant communities are some of the least represented in giving the OK to become organ donors.
Confusion, superstition and faith are some of the words that surface with the issue of organ and tissue donation.
Some are even under the impression that removing organs at the time of death means they won’t be seen by god on their ascent to heaven.
Clarification from the church has been necessary to ensure organ donation is a choice many can make without fearing cultural or religious punishment.
Now, as part of a DonateLife campaign to target multicultural communities, His Eminence Archbishop Stylianos has taken the time to brief the community and come out to support the worthy cause.
In a statement, the Archbishop has highlighted the gift of life as being one of the most noble gifts a Christian can give.
“Organ and tissue donation transforms the lives of people in need of a transplant,” His Eminence says.
“It respects the sanctity of life and enables people to give the ultimate gift of life to others. This is a most noble act and one which helps fulfil a deeper and more spiritual purpose for life.”
This landmark statement will see a more cohesive approach, with the ripple effect flowing down to local priests.
Already, the Archbishop’s Easter address to the community included the Church’s support for organ donation, and the topic has been getting the right awareness.
CEO of the Australian Government’s Organ and Tissue Authority, Yael Cass, says targeting culturally and linguistically diverse (CALD) communities through religion and cultural authorities has seen donations rise and seen more people ask their loved ones what their position would be.
“We’ve already seen at the hospital level, families who have come into an end of life situation with the family member want support when they’re discussing organ and tissue donation.
“The priests have now been very supportive and have encouraged families.”
In the first seven months of this year alone, the number of donations has increased by 29 per cent. There have been an additional 133 transplant recipients thanks to the growth in donation outcomes.
The reality is, though, that only 1 per cent of people who die in a hospital die in such a way that they can become an organ donor, making the need for donors all that more important.
For Marilyn, finding a kidney wasn’t as easy as movies will have you believe.
“I have antibodies in me that mean I was very limited as to what donor I could accept,” she reveals.
“There wasn’t much of a choice out there. I couldn’t get a kidney from just anyone.”
The fact that her donor had discussed donation with his immediate family meant Marilyn could be saved.
With her quality of life drastically improving, her family also gets a reprieve from the stress and the restriction of having a mother, a wife and sister dependent on six hour dialysis.
Due to the rarity of organ donation, it is vital that every Australian family ask and know each other’s donation decisions to rightfully pass on a loved one’s wishes. In Australia, the family is always asked to confirm the donation wishes of the deceased before donation can proceed.
Talk to your family today about whether you’d like to become an organ and tissue donor.
To find out more about organ and tissue donation and to read information in Greek, visit