Dots 21 years: from the cliffs edge to loving each and every day

My name is Dot and in 1989 at 36 I had a small leg infection for which I was prescribed penicillin. I still had an infection after the first course of antibiotics and after beginning my second course of tablets I became extremely ill with cholestatic jaundice and drug induced hepatitis.  I was itchy, constantly for the next three years.  My life became a mix of living as best as I could, I had my young daughter to think of as well as myself.  I had a very new job at that time too, which made it hard, but I found it helped to take my mind off things.

We continued living life as fully as we could,  I even took up dancing and bike riding over the next few years, and did quite a bit of kayaking as well, in amongst all the constant doctor and specialist appointments, tests, hospitals, and trying to make my daughters’ life as full and unaffected as I could.

Life was hard, for my daughter especially, but I can definitely say it was never boring.   This went on for eleven years until my specialist told me I was ‘standing on the precipice of a cliff, about to fall over’, and, that he thought it was time I was referred to hospital… I needed a liver transplant.

The transplant family at clinic were extremely good and my visits there got closer together over the next ten years.  Work, family life, and play continued also, as did a multitude of tests and hard times. My daughter Suzy was amazing, my rock, I just hope I have been able to show her that she was the one who got me through all the difficult times, and just how much I love her.

The number of other transplant patients I saw each time I visited the clinic also expanded with time and seeing them reminded me that I wasn’t the only person with a problem and that each of us were experiencing some of the same, and others, much more severe and unique symptoms of the dreaded liver disease.

After seven years at clinic and still being extremely ill I requested to be assessed for transplant however, I wasn’t as sick as I needed to be at that time.  The next couple of years were really hard, and among other problems, I ended up with fluid build-up in my lungs, needing constant draining and I was hounded by the nutritionist to eat or I’d eventually end up with feeding tubes.  I moved house so that I was closer to my daughter and her new hubby, Dave, and also found out I was to be a ‘Nana’ for the first time.

I was so ill during the next two years, I asked for and was given a voluntary redundancy from my work – I wanted to clear all my debts, just in case.  I ended up malnourished with feeding tubes, and the constant battle of fluid on the lungs, and never-ending tiredness.  I got so bad that I needed to move in with the kids and Suzy, although she was pregnant she was my constant carer and my pillar of strength.  My sister Pam helped out as much as she could and took me up to the Coast some weekends to stay with her and her husband Howard, they were amazing.

I ended up with not only fluid and malnourishment problems, but also encephalopathy (brain disease causing black outs and weird behaviour) and I could feel I was slowly getting sicker and sicker.  I was finally assessed for a transplant and was listed.   Some wonderful organ donor needed to die in order for me to continue living.  I too was then/am now an organ donor, not that my body would have been much good for anyone at that time.

In early 2010 I was off the feeding tube and tiredly going through the motions each day at home.   We needed to listen for the phone, just in case my time for transplant had come.  When I had my previous stay in hospital we had a midnight wait to see whether a donor liver on the way to hospital would be suitable for me, but it was not unfortunately to be  that night, another lucky patient was though.

At home our phones were constantly being left off handsets even though we all knew we needed them charged and where they should in case of ‘the’ call.  One night, mid 2010, for some reason I said to Suzy just before going to bed that she needed to take the phone to her room, just in case the hospital tried to call …. 1.30am the next morning my call came.

After 21 years of liver disease a caring and wonderful donor came to my aid and gave me new life so that I get to have some extra time with my beautiful granddaughters Bella and Mia and my family.  I am more grateful than words can express to both my donor, his/her family, and my surgeons for this extra time that I’ve been granted. I hope that if my organs are able to help out someone, or more than one someone, in need when my time comes then I would be honoured that I can help them.

Please to anyone who reads this post who isn’t a donor just consider that it could be the simplest problem, like my leg infection, that could escalate and threaten yours or your loved one’s lives. By being an organ donor you could help someone else to continue on their life’s journey … they will be eternally blessed and thankful and you will be forever in their hearts.

It is now almost five beautiful years since my transplant and I have been truly blessed and my family also by my Donor’s wonderful gift and I love every single day now because of him or her.