Everyone’s been guilty of counting down the hours of a Friday afternoon. As each hour ticks over you can smell the weekend barbeques, feel the sand crumbling between your toes and taste that first sip of well-deserved beer. The only thing getting you through is knowing that at 5pm the working week will finally be over. But what if you didn’t have the luxury of knowing exactly when your weekend will begin? What if you were just given a large time frame and even then there were no guarantees you could even take a break? Frustration, confusion and misery would probably consume you all at once.
This is the reality for patients waiting for organ transplants.
At any given time 1400 Australians are on the waiting list. On average, they can spend anywhere between six months to four years on this list with one person dying every week while waiting.
A person who knows this all too well is organ recipient Renée Falconer. At just 25 cystic fibrosis had taken over her lungs leaving her sleeping up to 18 hours a day and unable to shower alone or even walk the length of her small home.
“I knew I was dying for sure, I could feel it. There was a point where I was done with it as well. I was sick of being so unable to do anything, it hurt me mentally and physically and having to depend on somebody when you’re only 25 that was really hard,” she says.
Not expecting to survive her rapid deterioration during the wait, Renée made arrangements for her death; writing letters to loved ones, organising her will and discussing life support. But, fortunately for Renée she received a double lung transplant just three months after enlisting herself.
“I was normal height and weight and my blood type was common, so I didn’t have to wait as long as anticipated. They did say it would be five to eight months wait but then upon taking my lungs out the next morning I found out that they had given me two months left to live because of bronchial pneumonia that was festering in my lungs,” she says.
Renée is one of the lucky ones, she met the criteria. The waiting list is simply not a ‘next in line’ situation; a person’s physical features, ongoing health issues and blood group are closely assessed to ensure they are the perfect candidate for the scarce resource.
According to the Australian and New Zealand Organ Donation Registry, in 2016 there were just 106 Queensland donors, 323 lives saved and over 360 organ transplants despite it being a record year for organ donation. However, as of August 2017 the Queensland consent rate has already risen by 5.1 per cent from the beginning of the year and 70 deceased people have donated their organs resulting in a total of 204 transplant recipients across the state. Although significantly increased, these figures still fall short because of the strict regulations around organ donation.
To be eligible to donate a donor must die in hospital from two causes: either a brain or cardiac death. A brain death occurs when the brain is damaged from severe head trauma but the rest of the body remains unharmed and a cardiac death is where life support machines are keeping the patient alive. So, of the large amount of those who do register, only 1 to 2 per cent will be able to actually donate their organs.
Donate Life donation medical specialist Dr Sam Marment says the shortage is accredited to these tight but necessary regulations.
“It’s a combination of there not being many of those types of patients around who die that way and about people actually being able to be donated to that don’t have really bad diabetes where all their organs are being damaged and won’t be suitable for the transplant. Once you weed out all that, there’s actually not that many people that can donate,” he says.
So why can’t these rules be relaxed to increase this mere donation figure? With technology helping advance the medical world surely it is feasible going into the future that people who don’t die under these circumstances can still have a chance to donate. Well again it is not that simple, there’s even more restrictions. Each organ has a time limit between when the donor dies to when it needs to be removed and organs are also damaged during a non-approved donation death. But that’s not to say researchers aren’t investigating.
“One good thing is there’s a lot of research that is going into trying to expand the pool of potential people that could potentially donate so that more people would have the opportunity if they or their family want them to. They’re doing lots of research in Australia, the UK, the US and in other places to try and increase the numbers,” Dr Marment says.
Next month health professionals will travel to Melbourne for the annual Transplant Nurses’ Association National Conference, hoping to broaden their knowledge about organ donation and transplantation. Additional education, information and expanded research in the field will all be discussed. Yet is seems this research is predominately focused on how to increase the number of those who register.
In Spain consent is presumed unless a person registers to opt out whereas in Australia people must register on the Australian Organ Donor Register and make their wishes known to their families who will ultimately have the final say. The differing approach has worked for Spain, last year the nation recorded 43.4 donors per million of population (dpmp) compared to Australia’s average of 20.8 dpmp.
Dr Marment says it’s vital for everyone to discuss their wishes with their families ahead of time.
“You imagine if one of your loved ones is in hospital dying … and then someone talking about organ donation, it’s just such a stressful time. I mean it’s really hard for people to make that decision, but if families have spoken about it before and they say ‘yeah look, I know Mum’s spoken about this before she really wants to be a donor’, then that makes it so much easier for families having to make a decision at that time,” he says.
Once registered as a donor a person will also be able to donate tissues, even if they do not die under the regulated circumstances. Body parts such as heart valves, bones, tendons, ligaments and parts of the eyes can all be donated without the stringent rules attached.
Donate Life donation specialist nurse coordinator Shona McDonald says tissue donation is just as important as organ donation.
“They don’t need to die in the specific circumstances like an organ donor does so there’s a greater pool of people who can potentially donate tissue and you know it’s quite amazing and life changing for people who receive tissue transplants as well. Skin donation especially is actually considered one of the tissues donations that is lifesaving,” she says.
It’s not all bad news for those wanting to contribute after their death after all, but this still doesn’t help with the organ shortages. Going forward into the next year it is hoped the donor consent rate will increase even more to hopefully boost the number of eligible donors and reduce the ever-growing waiting list. For the moment, it is what the experts believe will make the biggest difference to those enduring their hardest countdown yet.