I have been diagnosed with Polycystic Liver disease since 1997. It is a genetic disease that I inherited from my late Mum. At that time, I had a normal life. This disease did not disturb me much. After I gave birth to my son in 2002, my liver kept enlarging. My condition was getting worse year by year. In 2008 I looked like a nine month pregnant woman.
Around October 2011 my condition deteriorated quickly. I did not eat and sleep well, my hair fell all over the place and I had ascites (fluid in the abdominal cavity). Most of the time, I woke up with blood stains on my bed as I had skin rashes. I had weight and hair loss, my quality of life was poor. I tried to stay positive but sometimes it dragged me down.
Around 2011 I had to go to hospital to have my abdominal fluid drained (called a "tap"). My trips to the hospital were increasing because the fluid would come back quickly. Around Christmas time 2011, Professor Angus told me that I needed to be on the waiting list for a liver transplant. I was so scared, not because of death but I wanted to see my son grow up. He was only nine at that time. We needed more time to do things together.
I was introduced to the Austin Liver Transplant Team. I met the team during my 2 weeks "Work-Up" program. Professor Bob Jones and Doctor Wang became my surgeons. The team work is amazing, all of them have brought me back to this life. The doctors, surgeons, social workers, physiotherapists, dieticians, office staff, chaplain, psychologist, nurses……… are a brilliant motivated team of wonderful individuals. All of them are experienced professionals with genuine concern and care for their patients. I prefer to call them my angels who have saved my life.
I found that it was better for me to keep active while waiting on the list. I had followed the advice from the hospital through the group sessions held for pre-transplant patients which I found very helpful.
A morning in August 2012 I received a call from a Transplant Coordinator who said there was a possible a donor for me. I was numbed at that time. I called my husband who was at work, I had to keep my voice calm as I did not want him to worry. My son asked me “Do we need to go to the hospital, Mum?” I replied “Yes, you might not be able to go to school today, Dad will come home and take Mum to the hospital”.
We arrived at the Austin emergency department around 9:15 AM. Things happened quickly so that I didn’t have any time to be scared. Around 11:30 AM I entered the theatre and the operation took around 12 hours. They said it was really hard to take out my massive liver. My husband was informed about the progress of the operation every hour or so. We really appreciated what the team had done for us.
When I next became aware, I was lying comfortably in the Intensive Care Unit, lots of machines and tubes. The first thing I did was to look at my tummy, realising the transplant had been done. I felt eternal gratitude towards the donor and donor’s family. I felt completely at ease with someone’s organ inside me. Pre-operatively I had tried to imagine what a transplanted liver would feel like but didn’t succeed as there is no comparable feeling.
I was pleasantly surprised this operation was not very painful, though a morphine pump for a few days was probably responsible for that.
After a few days, I was transferred to Ward 8 West. At some stages, I felt vulnerable as my mental and emotional states were also under constant assessment. Everyone was extremely helpful and kind to me and I slowly regained strength. I stayed on 8 West for nearly a month, felt safe, cared for and in good hands.
After one and a half years post liver transplant I feel extremely well, fortunate and happy. I didn’t dare to hope for such amazing results from a liver transplant. I received the gift of life from someone who lost his or her life. Without a transplant how many months could I have lasted?
One month after the operation I was home in time to celebrate my son’s 10th birthday. We are now happy and looking forward to doing things together, things that we did not dare to think before the transplant happened.
I am often overwhelmed at my good fortune and deeply appreciate the wholesomeness of life. I often wonder if donor families realise the value of their gift. It can only be expressed personally in anonymous letters through the Transplant Co-ordinators. In my significant, difficult to write Thank You letter I told the donor family that the donated liver has given me a healthy, happy life when death was imminent. I sent them blessings to heal their grief and wished them well for their future. I expressed my sincere deep feelings of eternal gratitude for their humanitarian gift.
I came back to work 6 months after the transplant, feeling much healthier than before and I enjoy work life.
I greatly appreciate the help of many exceptional people including all medical personnel, my family and friends and especially my donor and family who made it all possible. They all have my ultimate gratitude and frequent thanks for my existence in this world.
Thank you for sharing my story.