Personal stories Living with a blood disorder Adrian's Story As a teenager, Adrian often had fainting spells, and doctors and tests could not determine the cause. As he got older, they subsided, however unfortunately the episodes started again in 2010 and he knew something was wrong. “I’ve had so many tests over the years and nobody could pinpoint anything” As no one could find anything in the past, and being a busy kind of guy and always doing things, Adrian didn’t think it was worth investigating further. He never thought it was anything serious as the symptoms had stopped. When the fainting spells started again and Adrian just wasn’t feeling the best, his wife suggested he go to the doctor. After the GP ran a series of blood tests, the doctor said “I need to speak to you, then she told me what it was, my blood levels weren’t right and that’s how I knew”. “I said to my wife, I’ve done this so many times, I’ve had so many scans and they couldn’t find anything and this time they did” Adrian was diagnosed with chronic lymphocytic leukemia (CLL) and went on a “crazy” treatment regime, which didn’t feel right and was not successful. For a few years he was on a ‘watch & wait’ plan. The only family history he knew of, was an uncle who had a different form of leukaemia. ”You get told you have leukemia, at that point you don’t really know what to do” “It was a kick in the guts, I didn’t believe it” In 2013, Adrian met with Professor Ross Baker and “I haven’t looked back since”. As Adrian’s bloods weren’t looking the best, he started 3-4 rounds of chemo which knocked him around for years. Just getting back up and doing things was difficult. Feeling very weak and having a compromised immune system, Adrian was admitted to hospital for 1½ to 3 weeks at a time. It was a tough time. He had a three-month old son whom he had very little contact with. “My wife would come in and out of the hospital all the time with my other son who was only three-years old.” “It was nice to have the support of friends and family, to help my wife out at the time – everyone was very supportive” In 2019, Adrian joined a global clinical trial with Perth Blood Institute. The trial evaluated the impact of the drug Venetoclax on the quality of life of patients with CLL. During the course of the trial, Adrian was working with haematologist Dr Maan Alwan who closely monitored Adrian’s response to the drug. He experienced some adverse reactions to the treatment and recurring respiratory infections. As a result, his dosage was altered and he also receives an injection every month to help manage the infections. These have kept him healthy and the viruses at bay. Adrian’s recovery has been slow, and it has taken a long time to get back on his feet – “you don’t look back, you just keep going”. His advice to others is to be positive and “it’s nice to have lots of friends and family around”; and also “do what the doctors say”. He didn’t have any reservations about joining the trial, and is very grateful, and says PBI and the doctors have done a great job. “I get a level of care I couldn’t find anywhere else” Adrian continues to take his medication and has regular blood tests – his current test results are stable. He now has three children, is working as a building supervisor, and spends time working at his avocado farm. Adrian’s story is one of many which demonstrate the way your support over the last 10 years has enabled PBI to improve our understanding and treatment practices of blood disorders.