Thrombosis AustraliaThrombosis Australia is a central information and resource hub for the community proudly brought to you by the Perth Blood Institute Our Thrombosis Australia Advisory Panel consists of seven eminent Australian healthcare professionals. Thrombosis Australia Advisory Panel If you are a healthcare professional you can access the Thrombosis Australia Professionals site here: Thrombosis Australia Professionals About us About Thrombosis Tools & Resources Your stories What's new What's on Get involved For professionals Greg's story In 1968, Greg was 18 years old working full time as an apprentice printing machinist and part time as a cocktail barman. He was very active – in his spare time, he enjoyed water skiing, competitive sailing, car rallying, and boxing. One night when pondering his upcoming backpacking trip around Asia, he began experiencing muscle tightness that he attributed to boxing and bike riding that week. The next morning, Greg awoke with pain, heaviness, and swelling in both legs. He pulled the covers down, and noticed that both his legs, feet and ankles were swollen, and his feet were a darkish blue/grey colour. After showing his mum and going to his local GP, Greg was referred to hospital and immediately placed on precautionary intravenous anticoagulation therapy. Greg was diagnosed with deep vein thrombosis (DVT), blood clots, in both legs after multiple x-rays and examinations. Greg’s case was extremely dangerous as he had clotted from his chest down to his right knee. Soon after, Greg underwent a thrombectomy during which a surgeon attempts to surgically clear the clotting from the affected blood vessels. The thrombectomy and intravenous anticoagulation therapy was a great success, it enabled sufficient blood flow back to his heart. This was great news for Greg as it meant he avoided the need of more serious surgical intervention, including possible leg amputation and it reduced his risk of sustaining pulmonary embolisms, blood clots in his lungs. Greg was subsequently hospitalised for two months and placed on an anticoagulant medication for many years. Whilst continuing to undergo numerous blood tests and post op venograms to monitor the dissolving of the remaining blood clots. Whilst in hospital, Greg continued to exercise his stomach and leg muscles while in bed. At every opportunity possible, he snuck out of bed and went for long walks along the wards, until he was caught by ward Sisters and sent back to bed. Eventually Greg convinced the nursing staff to allow him to walk around the wards when possible. After being discharged from hospital, Greg was placed on medication and INR blood test monitoring for several years. He wears the 100mm scar in his right groin as a badge of honour. Greg resumed his fulltime work as an apprentice and continued with his active lifestyle. In 1985, Greg developed spontaneous DVTs in both legs and resumed his previous medication – however, in 1991 this medication resulted in a severe haemorrhage, meaning that he would have to stop taking it. Following this, he suffered from thrombophlebitis (clotting in a vein under the skin) and was required to resume the medication once more. “As individuals we all have the choice and power to either rise or crumble when confronted with a blood disorder or any other medical condition that we may encounter throughout life.” - Greg After years of experiencing blood clots and complications from therapy, Greg was put in touch with Professor Ross Baker (now at the Perth Blood Institute). Prof Baker was investigating the cause of Greg’s clotting, as it was determined he had a family history. Professor Baker conducted research on Greg’s older sister who had previously suffered a pulmonary embolism and his father who had developed a blood clot in his right arm during his early 70s. In 1994, Greg found out he suffered from Factor V Leiden mutation with an aggressive Activated Protein C (APC) Resistance, a heritable genetic mutation which increases the likelihood of clotting in carriers. After screening blood samples from all of Greg’s family members and children, Professor Baker discovered that they were all heterozygous for this mutation, which was passed down unknowingly from his father. “Professor Ross Baker and all your team members at the Perth Blood Institute – my family and I thank you sincerely, as will our future generations, for enabling us to understand and manage our thrombophilia and empower us.” - Greg Prof Baker continues to manage Greg’s thrombophilia and conduct blood research and monitoring on his extended family. Through the research conducted, they have identified a large number of Greg’s family members who inherited the Factor V Leiden Activated Protein C (APC) Resistance mutation. Greg’s grandson, who is currently only 18 months old, will undergo blood analysis when he is older to determine if he has inherited the mutation. Following this discovery, Greg participated in a clinical trial for a then-new anticoagulant medication. The new anticoagulant has given Greg more stability in the treatment of his thrombophilia, with less side effects.