As we head into the holiday season, I find myself thinking about what I’m most thankful for and I’m sure many of you are doing the same.
I’m what the NORTH Foundation fondly refers to as a ‘grateful patient’ and rightfully so – I am indeed grateful for the exceptional care that my family and I continue to receive.
While the healthcare staff appreciate the flowers and chocolates they get from patients at Christmas, they would rather people support the NORTH Foundation. Your generous donation will help healthcare and research teams help more people like me.
I lived in the Northern Sydney Local Health District (NSLHD) for many years and now live miles away in remote NSW, but throughout my whole life, my family and I have relied on Royal North Shore Hospital.
We have always been met with dedicated professionals who provide exceptional support, and I know firsthand how much they help families like mine across the state.
Forty years ago, I was born at Royal North Shore Hospital in the old maternity block which my mother remembers had a lovely wide verandah. Two years later, my sister was born there too. She suffered from asthma, and when she was young, we would often use the pool at Royal North Shore Hospital as part of her therapy. Of course, the hospital has changed a lot since then!
When I was 13 years old, I can distinctly remember noticing my legs were different colours. My fingers and toes would get pins and needles when I was cold.
A specialist at Royal North Shore Hospital diagnosed me with Raynaud’s disease, where the small arteries narrow and limit the amount of blood to my peripheral nerves – I basically couldn’t feel extreme temperatures.
Georgie on her farm
My dream was always to be a farmer and live where the red dust swirls, and after I met my husband Cranley at the Sydney Royal Easter Show, I moved six hours away to be with him. Our farm is on 4,000 acres with 2,500 sheep and 1,000 acres under crop and the nearest GP is 80 kms away!
We’d only been married for three years when Cranley became critically unwell. He’s a fit man who had only just stopped playing rugby, so it was a real concern when he suddenly collapsed and had slurred speech.
He was diagnosed with sick sinus syndrome of the heart and was then airlifted to Royal North Shore Hospital where he had a pacemaker fitted.
Although we live in remote NSW, the hospitals and healthcare staff in the Northern Sydney Local Health District have consistently provided us with support. They have been with us every step of the way, and I feel deeply compelled to give back in appreciation for everything they’ve done.
For patients like me, all we want for Christmas is for you to please give a gift today to support the NORTH Foundation.
In 2013, I noticed that I was more tired than usual, but I put it down to the fact it was harvest time. As the sun was setting, I jumped into the ute to make my way back to the house. My hands gripped the steering wheel so tightly I couldn’t straighten my fingers. I had experienced claw hand before, but nothing like this and it was scary.
I was referred to neurologist Associate Professor Karl Ng at Royal North Shore Hospital who ordered a series of blood and nerve tests. I knew deep down there was an issue when I didn’t react to temperatures as low as –33C.
Georgie on apheresis
I spent two weeks at the hospital undergoing more tests, followed by five apheresis treatments to filter the unhealthy antibodies from my blood and exchange the plasma.
It was at this time that Dr Ng diagnosed me with neuromyotonia which is an autoimmune disease caused by my immune system attacking healthy cells and so far, there is no cure. I get painful cramps, spasms, stiffness, twitches and weakness in my muscles.
I had mixed emotions about my diagnosis. I was shocked but relieved that I knew what it was, but also concerned that it could develop into another neurological disorder in the future.
Healthcare staff don’t need more chocolates as thank you gifts, but a donation to the NORTH Foundation will make a real difference to medical treatment and outcomes – so please show your support this festive season.
I’m a positive person – you have to be when you live on the land and go through drought, floods and fires – but my illness is so chronic that it makes everyday jobs much more difficult at times.
I’m told there are only a few hundred people in the world who have the same disease as me, but I am thankful for my family and for my amazing healthcare teams at Royal North Shore Hospital.
In 2015, when I was pregnant with my daughter, I was advised that I would need to have a caesarean section due to my illness. She was born on the same campus as me and I wanted to be close to the neonatal intensive care unit should there be any issues, as well as the apheresis unit for treatment.
Two years later, my father was diagnosed with leukaemia and passed away at Royal North Shore Hospital within a month of diagnosis. I remember us all receiving amazing care and support during this difficult time from the Northern Sydney Cancer Centre and intensive care unit.
If you are also thankful for the care you or your family has received from the wonderful healthcare staff across the NSLHD, please give a gift to the NORTH Foundation this Christmas.
I have now been receiving apheresis treatments every month for the past 11 years. It’s a four-day round trip away from the farm, and while I’m not getting better, I’m thankful I’m not getting any worse and the treatment is keeping me alive.
I also continue to live with Raynaud’s disease which makes everyday tasks a challenge as I can’t feel the temperature of the shower or the pot on the stove when I’m cooking dinner.
Coupled with the neuromyotonia, my prognosis for the future is uncertain, however the more stable I can be from having treatment, the more I can live my life to the fullest. Living on the land has taught me to be resilient and I need to keep going for the farm and my family.
Grateful Georgie
The Northern Sydney Local Health District continues to care for us all even when we least expect it. In October this year, Cranley had his prostate removed at a private hospital and while he was recuperating, he developed a complication. He started getting chills and a fever, so we went to Royal North Shore Hospital emergency where they diagnosed him with methicillin-resistant Staphylococcus aureus and gave him a strong course of intravenous antibiotics.
Thankfully my husband is back home now and should be feeling better in time for the harvest and Christmas.
You never know when you or your family will need the expertise of the healthcare and research teams within the NSLHD, so please support the NORTH Foundation Christmas appeal.
By giving to the ‘area of greatest need’, your donation will be directed to where it’s needed the most – like in support of the things on our Christmas wish list. This wish list features examples of items that our healthcare staff would like in order to help more patients like me. Please take a minute to read the impact these items will have on improving patient care.
Best wishes to you and your family this festive season,
Georgie
