What it's like to donate an organ

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My niece was born with bilary atresia, a rare and severe disease of the liver and bile ducts that occurs in infants. So for months she remained in intensive care in Starship, and was subjected to enough injections, medications, examinations and surgeries to last a lifetime, let alone the precious little time she had been in the world.

As I’m sure many people in my position have done before, I thought “I wish there was something I could do”. To stop Katie being hooked up to machines 24 hours a day. To prevent the hours my sister and brother-in-law had to spend at her bedside as she was poked and prodded by a seemingly unending parade of doctors and nurses. To give my niece the chance to experience the world outside the hospital ward.

Thankfully, I was able to do something.

Roughly six out of seven people who volunteer to be a live donor are rejected.

As my niece’s condition continued to deteriorate, the decision was finally made that she needed a donor for a liver transplant, sooner rather than later. Finding this out was a relief more than anything else. I put my hand up straight away.

The one thing that really worried me about volunteering was that I might not be able to do it. Roughly six out of seven people who volunteer to be a live donor are rejected. This can be due to range of physiological, medical, psychological and social factors, which is why living donors (including myself) have to go through a vigorous screening process to ensure the right type of organ is being donated for the right reasons.

Thus two days of my life were spend traipsing throughout Auckland hospital, ticking off a considerably long list of appointments with transplant coordinators, psychologists, anaesthetists, surgeons and social workers, on top of multiple medical examinations, blood tests and CT scans.

After which I was finally told I was a viable match.

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They wanted me to take some time to think and let them know my decision the next day. But I had made my decision months beforehand. There was no doubt in my mind that I would be a donor. 

However, during all the tests, meetings and discussions, one major factor trend became apparent: nobody wanted me to do this. I was very clearly told that a deceased donor is always the preferred option, and if a liver from a deceased donor were to become available, it would always be used, even if it came just minutes before I was to go under the knife.

I was also regularly informed that I could pull out at any point, no questions asked.

Live organ donors are a last resort, the backup plan nobody wants to action. The very idea of operating on a perfectly healthy person goes against the very nature of the medical profession: Primum non nocere - First do no harm. It is only under the most extenuating circumstances that screening for live donors occurs, which was a testament to how desperately my niece needed a liver. 

I don’t remember much about the operation, but post-transplant was exceedingly frustrating, difficult and painful. In fact, I was informed that organ donation is considered one of the most painful operations out there, because unlike unwell patients, live donors go from completely fit and healthy people to extensive trauma patients in a matter of hours.

Ongoing recovery is also a particularly intensive process, as you not only have to recover from major invasive surgery, but your body regrows the part of liver that has mysteriously gone missing, causing issues such as chronic fatigue and muscle loss, due to protein being redirected to the repair process.

I received $210.13 per week in financial assistance. That’s more than $300 short of the current weekly minimum wage.

The aftermath of live donation can have a huge impact on a donor not only physically, but also financially. Soon after I was confirmed as a live donor, I received a form signed by my surgeon to apply for Live Organ Donor assistance to cover expenses during my operation and recovery.

However, the amount available for donors fell well short of what I would expect from a country like New Zealand. Under the current system, I received $210.13 per week in financial assistance. That’s more than $300 short of the current weekly minimum wage; not enough to cover the most basic of expenses.

Thankfully a proposed new bill currently being considered by the Health Committee would increase the financial assistance for live donors to 80 percent of their salary pre-donation, plus the payment of childcare assistance if required. Nobody (in New Zealand at least) becomes a donor for financial benefit, but the financial burden of volunteering to be a live donor can be a limiting factor for many people.

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I’m currently a few months post-surgery and pretty much back to normal. My niece is out of hospital and doing better than anyone expected. She still has a long way to go, but seeing her do all the normal things that babies do is more than we could have dreamed of last year.

All I keep thinking is how lucky we got. If my liver was slightly too big, or the blood vessels in the wrong place, or if I had any underlying medical condition that would make surgery even the slightest bit riskier, then we could be in a much worse position.

New Zealand’s deceased organ donation rate remains among the lowest in the world. If I hadn't been a viable donor, there is no guarantee another liver would be available. As a country we need to do a better job, and the best way you can help is by having a five-minute conversation about organ donation with your family. Someday there could be a Katie out there who needs you.