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Run for one Inspirational Lady
Hannah Laird
Run for one Inspirational Lady
Story
Not all of you know Sheryn, but we hope when you read her story you will understand why we have all been inspired to raise some much needed awareness and funding for the Liver Transplant Unit at RPA. So please please take a few minutes to read Sheryn’s story which she is so courageously and so openly sharing in order to be the 'Poster Girl' for our fundraising efforts. We challenge you not to be moved to donate.
Sheryn’s Story:
In late 2008 I was diagnosed with a rare disorder of the liver called Budd Chiari Syndrome (BCS). So rare is this condition that in Australia there has only been 11 known cases diagnosed in the past decade and of those only 4 of us are still alive. BCS results in the hepatic veins, which pump blood from the liver, to be blocked with blood clots which mean the liver no longer functions properly. When the veins are completely blocked, as mine are; most people die of liver failure within 3 years if untreated. Fortunately I am being treated by the Royal Prince Alfred liver transplant unit, but unfortunately my prognosis is unknown as my condition has not followed the ‘normal’ path. Despite this treatment which has included countless scans, blood tests, bone marrow biopsies, the insertion of a stent in my liver, the blockage of that stent 5 months later, approximately 105 days in hospital over 18 months including 5 days in intensive care, having a lot of my hair fall out, injecting myself with blood thinners twice a day, almost constant pain and taking up to 5 other medications daily, the cause for my condition cannot be found. Idiopathic is what the medical fraternity calls it, which in layman’s terms mean that they have no idea. Unfortunately for 50% of BCS patients this is the case.
I currently have all of the veins in my liver blocked, the IVC, the major vein which pumps blood from the bottom of my body to my aorta blocked and new blockages forming in the veins which pump blood from my kidneys. The reason for my continual clotting have not yet been identified –For me, surgical intervention at this stage is not an option but it is highly likely that within 3 years I will need a liver transplant.
I’ve had my fair share of battles in my life with my entire immediate family having passed away but this is the hardest battle I have had to face as there is no known prognosis, limited research and a plethora of ‘what if’s’. My entire life and future have altered. My life is on pause until medical research can catch up to the mystery of my condition. Because of that Rachel is putting her body on the line to run the Sydney marathon and raise money for the RPA Transplant institute. By donating money you can help extend research into pre and post transplant care, research into rare disorders of the liver and help improve survival rates for patients like me.
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The RPA Transplant Institute
The Royal Prince Alfred’s Hospital Department of Transplant Services includes the Australian National Liver Transplant Unit and the NSW Kidney Transplant Unit. It was the first and is the largest Transplant Service in Australia today.
The RPA Transplant Institute is the research centre of Transplantation Services at RPA. Our mission is to conduct high quality scientific and clinical research that will lead to cures for diseases and find solutions to one of the key challenges facing transplantation medicine, the need for immunosuppressant therapy and the side effects it brings.
We aim to advance the knowledge of transplant healthcare professionals and create treatments that will contribute to prolonged, improved health for all transplant patients.
Through the education of patients, physicians and the wider community we will create a greater understanding of transplantation and the significance of transplantation as a critical means of prolonging life.
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