Eight years ago Tracy hadn’t heard of Lymphoedema – a swelling in an area of the body due to damaged lymph nodes.
Tracy was a fit, active young woman, competing in track and field. Lymphoedema hadn’t crossed her mind – why would it? However, that was about to change when she rolled her ankle while taking part in a search and rescue exercise. “My ankle started to swell up, however instead of the swelling coming down over time, it got worse. At one stage you couldn’t tell my ankle from the rest of my leg,” says Tracy.
It took a while for the doctors to diagnose lymphoedema and the treatment that followed did nothing significant to reduce the swelling. “My leg was the size of a tree trunk and I was desperate to try anything in the hope that it would make a difference,” says Tracy. I tried massage, compression garments and fancy looking lymph drainage machines from different clinicians around the country. This made little difference to my leg. My life changed dramatically. I couldn’t exercise like I did before, ride horses, which is my passion and I couldn’t fit into my normal clothes and shoes. I had to wear custom-made trousers and shoes which were costly but necessary for my job. I was also in and out of hospital fairly regularly with cellulitis. All it took was a simple scratch and I was in trouble. This required a lot of time off work. I had literally reached the end of my rope and when doctors recommended amputation I seriously considered it. I wanted my life back and if I had to lose my leg to do it then so be it. What I didn’t know at the time was that fate would intervene. It was on a visit to Middlemore Hospital for yet another bout of cellulitis when I saw a poster in the lift that would ultimately change my life. The poster was advertising the Lymphoedema Service at Middlemore Hospital. My hope started to return. Maybe these people could help me. I immediately booked an appointment.
“When we first met Tracy her leg was grossly swollen – she was really desperate and I think she saw us as her last chance,” says Jodie Reynolds, Lymphoedema Physiotherapist. “Through no fault of her own, Tracy hadn’t been receiving the correct compression treatment or advice and I remember seeing the disbelief on her face when we told her we could reduce the swelling by half. Sure enough after a few treatments Tracy could see her ankle again!”
“Although we are a small service in terms of resources we are the largest in NZ and have the biggest patient population, says Peggy Williams, Lymphoedema Nurse Coordinator. “Our patient group ranges from paediatrics to the elderly and often have associated complex health issues. We treat congenital lymphoedema as well as secondary which can be due to vascular, trauma, oncology, infection, obesity, surgery, and dermatological conditions. As well as treating patients like Tracey we run ‘at risk’ programmes for those who undergo sentinel or lymphatic dissections for cancer treatment. This is mainly, due to the damage these treatments have on the lymph vessels, resulting in swelling. While every case is individual proper diagnosis is essential followed by appropriate treatment. In the majority of cases compression bandaging and garments can make a huge difference as well as educating people regarding the importance of skin care and exercise. To date, we have 1000 people under our care, however with people living longer, and due to early detection and better cancer treatment this number continues to grow. While we are a small team (there are three of us) we also provide consultations to clinicians around the country. Our aim is to raise awareness and provide education about Lymphoedema, which at the moment is a relatively undiagnosed and undertreated condition. We don’t want people to go through what Tracy did.”
As for Tracy she now has her life back. She is back to wearing ‘normal’ trousers and hasn’t’ been back to the hospital with an infection for the past four years. While Tracey knows her condition will never go away, she now knows how to manage it. Her life is very different to what it was eight years ago.
“The lymphoedema service at Middlemore Hospital saved my life. If it wasn’t for them I’m not sure where I would be right now. I will always be grateful.”
Tracy, Jodie, Peggy and Geraint