Michael and Lydia have been married for 38 years and have experienced both being a carer and a recipient of liver transplantation.
They are the first couple we have transplanted, (we have also transplanted siblings!)
Michael was transplanted 11 years ago and Lydia 6 years ago, both are fit and healthy and only come to clinic once every 6 months.
Michael and Lydia are loving life especially time spent with their grandchildren.
Living with someone on the liver transplant list is a very challenging role. Once you are activated, there is a lot of excitement but if the wait is long, that excitement wanes.
My husband was on the waiting list for 23 months which is quite long and during that time I watched him get sicker and sicker, slower and slower in mobility and gradually lose many of the things that most of us take for granted...driving, work, desire to socialise etc.
His personality changed a lot, and during that time I felt I had lost him, but it is really just the disease and the encephalopathy.
As the wife, my role changed dramatically to that of carer. I also decided early to continue working as much as possible which helped me get a break, think about other things, and enjoy normal kind of conversations. This may not be you, but for me even though I was physically tired most of the time, it worked. As I work in a hospital, it was always easy to find someone far worse off than us, so that was very grounding.
We had 2 false alarms and then finally the transplant. These are difficult. Our first dummy run came after 18 months so of course we were very excited. We were quite disappointed, and my husband began to feel quite low, this did not improve with the second dummy run. It was difficult to keep his spirits "up" after that.
As the mum, I was also the person dealing with all the emotions of other family members too. Make sure you try and do things for yourself...anything...go window shopping, go for walks...have long showers, baths....
The transplant was quite straightforward and we have had little complications. After about seven days, the husband I remembered from five years before began to emerge, so thankful to be alive, and really began to work hard on his recovery.
Within two weeks he was well enough to go home. Within a month he was feeling energetic and euphoric. Within three months he was working three days a week. Friends and family cannot believe the change, it is truly a miraculous surgery.
The gratitude my family feel towards the transplant team cannot be put into words. My husband has been carefully monitored and looked after wonderfully.
Some words of encouragement- the end of your story has not been written yet... so try not to imagine what it will be... live day by day... things change.... I never in my wildest dreams expected my husband to be so well again and if it all went wrong tomorrow I am so grateful to see him come back to us and enjoy his life again.
Greg “feeling great” 5 weeks after transplant.
“Walking 2 kms a day although one day I walked 4 kms and overdid it, I’m learning to pace myself, my goals is healthy living and to make the most of this opportunity”.
Greg wants thank everyone at Austin Health, his donor family and family and friends for helping him through.
He and his family are so grateful his father saw him well again before he passed away last week.
When I about 18, I became very ill and was eventually diagnosed with PSC - 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.
So I had known for years that I would have some serious health issues to face but, my condition was able to be stabilised for many years, with only a couple of stays in hospital due to infections. But as I got older, things began to get more serious – the bile ducts in my liver were almost completely blocked and I was assessed to be put on the waiting list for a liver transplant.
Luckily, I passed all tests and requirements, I became one of the lucky ones to be activated on the waiting list.
Our lives were now on hold, waiting for that phone call. I 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.
My life became a blur of appointments, blood tests, procedures, dashes to emergency, hospital stays...I slept most of the day if at home, and I was extremely fatigued all the time. I was not hungry and was losing weight.
I had what is known as a “dummy run” after waiting approximately five 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.
My wife and I downsized and moved into a town house, we both gave up full time work - I because I no longer had the strength, and my wife so she could become my full time carer, we prepared our wills....and waited.
During this time, I made it a priority to keep my fitness levels up and went to gym as often as I could. When I found I was struggling with weights, I started doing water classes.
After about a year on the waiting list, my condition began to worsened very rapidly - the doctors were now very concerned about my chances and I was one infection or blockage away from no return.
Then approximately after 14 months of waiting, the call for my transplant came. I had been in hospital for a week before and my blood tests were showing that my body was beginning to give up. My health issues were getting very serious so it was such a relief to get the call!
So we headed off to the hospital and it 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 seven 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 my wife and I, it was, and still is, like winning the lottery. My wife was asked later how she felt seeing me being wheeled down the corridor to theatre and all she could say is it was utter relief. Whatever happened from then on, it was a new journey with different challenges. Without the transplant I would die... this was my second chance and we had absolute faith in the surgeons and the rest of the transplant team.
I spent just over six hours in surgery and became the recipient of Austin’s 785th transplant (a membership to a very exclusive club!). My wife saw me in ICU less than an hour after surgery finished, and the change in my colour was already noticeable. About 48 hours later, I was back up in the ward. Nine days later I was home. And I haven't looked back since!
With all my best efforts to keep myself strong for whatever lay ahead, I would never have survived without that very special factor...the gift of a liver from an organ donor.
one week before transplant one year after transplant
Update - November 2018
One of my goals for recovery was to do my first every fun run, and just over 5 months after transplant, I completed a 4km run...it was proof that my body was recovering.
The next goal was to do the BUPA Around the Bay Bike Ride, and about 16 months after transplant, I did the 100kms trip from Sorrento to Melbourne.
It was very tough but after everything I had been through, I pushed through and did it!
Since then I have achieved more goals...I competed in the running and cycling events at the Australian Transplant Games in Melbourne.
I joined a cross county running team, and have gradually extended my running distances...10km...15km...and I completed a half marathon event in under 2 hours!
And then in October this year, I achieved my next major goal…completing the Melbourne Marathon!
I certainly never imagined back when I was struggling to even walk a short distance, that my body and mind would now be strong enough to run 42kms in what turned out to be rather tough conditions!