SHAYLENE PERRY, 34, FOUNDER AND MANAGING DIRECTOR OF LOVE LIFE; GIFT LIFE, IS A LUNG TRANSPLANT SURVIVOR WHO APPRECIATES EVERY MOMENT SHE SPENDS WITH HER HUSBAND, RYAN, 35, AND DAUGHTER, TAYLOR, 4. SHAYLENE LIVES WITH HER FAMILY IN HONEYDEW, JOBURG
It was devastating to find out I was terminally ill at the age of 25. Just two weeks before my first lung operation, I’d qualified as a chartered accountant, but despite this achievement, I felt like my life was over, even though it had only just begun. Initially, I thought I was unfit and struggled to climb stairs and walk long distances. As my condition progressed, I realised it was more than that, and was treated and tested for everything possible, enduring numerous surgeries. The medical professionals were unable to diagnose the cause of my continual lung collapses. Fortunately, on my third admission to hospital, a pulmonologist finally diagnosed my illness – lymphangioleiomyomatosis – a rare lung disease with only a handful of sufferers, who are predominantly women. After a challenging but fulfilling pregnancy, my daughter, Taylor, was born. My childhood sweetheart and husband, Ryan, was at my side. Luckily, my lung function had been reasonably stable until then. Our beautiful child arrived well and healthy. Shortly after my daughter’s first birthday, we moved to Joburg, and my lung function declined – the disease progressed rapidly. Within a few months, I was on oxygen 24 hours a day. A lung transplant was the only option I had if I wanted to live!
The first thought that came to mind was I wouldn’t get to see my baby grow up, or be there for her when she needed me. I waited a year, to the day, for a donor and was admitted for the transplant. Without the transplant, I wouldn’t have lived longer than a few weeks, and certainly wouldn’t have lived to see Taylor’s third birthday. It was a tough time for my family. My husband worked fulltime, and looked after us, too. I was, and am, beyond fortunate to have him in my life. We met as teenagers at school, and have been together ever since. He has been with me all the way and also acted as a live-in nurse. I was fortunate in the sense that my recovery from the operation was quite easy and without complications. It took a few weeks to get my strength back to a place where I felt almost normal. The year I had my transplant, my father’s cancer returned. My mother spent time travelling back and forth between Joburg, where I was, and Durban, where my parents lived and I grew up, to look after us both. So, my family had two very sick and terminal members. My dad and I often jokingly spoke about who would live longer. He lived long enough to see me get my lung transplant and passed away just six months later. He told everyone that he could pass peacefully as his main worry was whether I would get the life-saving organ transplant that I needed. I was dismayed and shocked at how few organ transplants took place each year in South Africa. I felt like I wanted to try and help or do whatever I could to change this. I met some amazing women while waiting for my transplant – Alice Vogt, Fawn Rogers and Siobhan Scallan – all of whom also received lung transplants. We wanted to assist and get the rate of donor operations up. Together we established Love Life; Gift Life, and received positive feedback from the public and medical industry. The organisation has become more than we ever could have imagined. We hope to teach the public about the donor process and help address the shortage of organ donors in South Africa. We also offer an online support group, through Facebook, that is exclusively for pre- and post-transplant patients. I survived because of my family and their love and support. Having already endured so many life-threatening situations, and operations, and making it through all of them, made me more determined than ever to make it through the transplant process. I wasn’t going to let organ failure keep me from living. My stubbornness would not allow me to let my life go. When I was well enough, I picked my daughter up in my arms for the first time. She looked at me in a confused way and asked me what I was doing. I replied that I was lifting her up for a cuddle. I hadn’t been able to do something like that before – an act of love that most parents take for granted each day. I’m passionate about the work I do, and love being at home with Taylor – when I can be. I missed out on so much when I was sick. I relish the precious and special moments I was unable to experience before. My advice is don’t give up – ever! To all those people out there waiting for an organ donor, stay strong and keep on fighting!