DonateLife Week 2014 starts tomorrow, promoting organ donation awareness across Australia.
So I thought I would share my husband’s liver transplant story…some of you may already have heard our story, but we feel it is important to share it as much as possible to promote the importance of organ donation, and how it can change someone’s life in ways you can only imagine
When Jas about 18, he became very ill and was eventually diagnosed with Primary Sclerosing Cholangitis – a chronic liver disease whereby the bile ducts become narrowed from inflammation and fibrosis.
Over time, the scar tissue builds up and can block parts of the bile ducts completely.
There is no cure…a liver transplant is the only proven long-term treatment…..
So we had known for ages that he would have some serious health issues to face, but, Jas was lucky that his condition was able to be stabilised for many years, with only a couple of stays in hospital due to infections.
But as he got older, things began to get more serious – the bile ducts in his liver were almost completely blocked, and he had a close call with an infection that put him into ICU in hospital…
He was then assessed to be put on the waiting list for a liver transplant.
Luckily, he passed all tests and requirements became one of the lucky ones to be activated on the waiting list….not everyone gets that far…
Our lives was now on hold, waiting for that phone call. Jas became a bright yellow, walking skeleton…we got questions like “so when is the operation” and “why can’t you go on dialysis” and so on.
Our days became a blur of appointments, blood tests, procedures, dashes to emergency, hospital stays…he slept most of the day if at home, and was extremely fatigued all the time. He was not hungry and was losing weight.
Jas had what is known as a “dummy run” after waiting approx. 5 months…we went to hospital only to be told 12 hours later the donor liver was unable to be transplanted.
So back home and back to waiting.
We downsized and moved into a town house, we both gave up full time work – Jas because he no longer had the strength, and me so I could become his full time carer….we prepared our wills….and waited.
During this time, Jas made it a priority to keep his fitness levels up and went to gym as often as he could. When he found he was struggling with weights, he started doing water classes.
After about a year on the waiting list, his condition began to worsened very rapidly – the doctors were now very concerned about his chances of surviving, and basically he was one infection or blockage away from no return.
Then approximately after 14 months of waiting, the phone rang….he got the call…
Jas had been in hospital for a week before and his blood tests were showing that his body was beginning to give up. His health issues were getting very serious and we were beginning to think he wouldn’t get a liver in time…
We got ready and headed off to the hospital…hoping that it was really going to happen this time…
The day was a real emotional roller coaster ride while waiting – one staff member said it probably won’t happen and then another said its all looking good.
About 7 hours after arriving at the hospital, the message came from theatre…it was on!
Most people would be terrified facing such a huge operation, but to us, it was, and still is, like winning the lottery.
Jas spent just over 6 hours in surgery and became the Austin’s liver transplant no 785 (a membership to a very exclusive club!).
I saw him in ICU less than an hour after surgery finished, and the change in his colour was already noticeable….the yellow was fading!
About 48 hours later, he was back up in the ward.
Nine days, he was home….and he hasn’t looked back since!
With all the best efforts to keep Jas as strong as possible for whatever lay ahead, he would never have survived without that very special factor…the gift of a liver from an organ donor.
So please…. have the chat with your loved ones so that they know your donation decision. Don’t forget you also need to ask and know their donation decision.
And its a good opportunity to register your donation decision on the Australian Organ Donor Register, and encourage your loved ones to register their decision.
Every Australian family needs to know the donation decisions of their loved ones. This is because, in Australia, the family of every potential donor is always asked to confirm the donation wishes of their loved one before organ and/or tissue donation can proceed. Families that have discussed and know each other’s donation decision are much more likely to uphold that decision.
Having the chat with your family during DonateLife Week will help you be prepared, should you ever be asked to confirm a loved one’s donation decision.
It’s a chat that could one day save lives….it saved my husband’s….
To find out more about DonateLife and organ donation, please visit the Donatelife website.