As someone who knows what it is like to be stuck on a waiting list for a transplant, the news that 2016 was a record year for organ donation is just fantastic.
Thanks to the generosity of 503 deceased organ donors and their families, a record 1,448 Australians were given a second chance in life last year.
This means almost 1500 people had their lives saved or improved for the better through transplantation….and it is all because of the generosity of the 503 donors and their families.
And what makes this record number even more amazing is that not many people who die can become donors.
Organ donors must die in hospital where their body can be medically supported until the organs can be donated.
Which is why we need more people who are willing to be donors should their time come…there are approx 1600 people waiting for transplants at any one time.
So how do I know what it is like to be one of those 1600?
My regular readers will know my husband had a liver transplant…you can click here to read his story in full.
But to summarize in a nutshell…he was diagnosed at 18 with Primary Sclerosing Cholangitis…an autoimmune disease that irreversibly scars the liver with the only solution being a liver transplant.
PSC can be somewhat unpredictable but he was pretty stable for about 18 or so years before the wheels starting coming off.
An endpoint was rushing up fast….so it was onto the waiting list for a donor liver….
It was a scary, stressful, frustrating time…and for us, it was a 14 month wait.
Some people may only wait a day or two…others are still waiting over two years after activation.
There is approx 50 patients on the list at any one time and it shifts everyday as patients improve slightly, deteriorate, get too sick for transplant, die…or get transplanted.
My husband is a rarer blood group, so there was only a relatively few waiting…but we know of at least one who did not make it.
They died before a liver was found…that’s the stark reality of what can happen when you are in need of a donor organ.
There is nothing you can do in terms of where you are on the list…you have to place your trust in the medical team and you are constantly assessed as to how your condition is.
When a donor liver becomes available, it goes to the best match…blood type, size, condition etc.
So even if you are the top of the list at any given time, the next liver that is available may not be a match..so it’s back to waiting.
And then there is the dummy runs…this is when you are called in because a suitable liver has been found, but then something wrong is found with the liver, and the transplant is subsequently called off.
We had one dummy run during the 14 months…others have experienced 3 or more!
But watching a loved one get sicker and sicker is hell…all you can do is try to make them as comfortable as possible.
My husband came very close to meeting his endpoint…but thankfully, he is one of the lucky ones.
A compatible liver was found and his life was saved…
Fast forward to over four years later and he is the healthiest and happiest he has ever been…he is also the fittest as he doesn’t waste a minute of this second chance…
Both of us are registered organ donors….I have been since I was old enough to sign up, and yes, my husband can still be a potential donor, although obviously not for his liver.
Hopefully this situation of considering organ donation will not arise for many many years, but if it does, I want to be able to help someone else the way my husband’s donor helped did.