Gerry Ryan

It's New Year's Day, 2012, and I am lying in my hospital bed thinking about the roller coaster I have been on over the past few weeks. I am 46, live in London (UK) and aside from a couple of background health issues, I have always been fit and healthy. So how did I go from that to being told I was dangerously ill, risked losing my leg and more, all within the space of a day or so. For the previous couple of months I had a niggling problem with my left knee joint. Nothing too bad and with a history of arthritis in my family I wasn't worried. On 16 December my knee imploded - a Bakers cyst had burst, which is not uncommon. I went to bed with some painkillers but got up early next morning and went to A+E. The suggested some rest and gave me stronger painkillers. I spent a few days hobbling around, seeming to make progress. On the evening of 21 Dec I went to bed early feeling like I had the flu, and with an incredibly painful ankle. My lower leg had started to swell and heat up. Spent a very uncomfortable night and by miring the pain was so intense in my lower left leg that I could not move from the bed. I called for an ambulance and lay there in agony trying to rationalise what was happening. I started to have mild hallucinations too - which didn't help. As soon as the ambulance arrived they immediately bundled me into a chair and got me to a large hospital just 5 mins away. On the journey their initial thought was DVT. However as soon as I arrived at the hospital I was lucky that the second consultant who looked at my leg immediately suspected NF. My liver, heart and kidney readings were going rapidly downhill. They started to treat me with a cocktail of antibiotics while doing further investigations. The next couple of hours were bizarre. I watched my leg turn red, purple, gold - was high on a mix of painkillers, IV antibiotics and fever. Yet I thought I was lucid. The hospital registrar came to see me and had to tell me in very plain terms how seriously sick I was. I then had to sign consent forms for surgery which really brought home the possible outcomes. At that point a good result was loss of my lower leg. The relief of arriving in theatre and feeling myself falling asleep is indescribable. I knew there was a possibility I might not wake up - but I really didn't care at that point. Over the next 10 days I had 5 operations plus skin grafts. Most of the time I existed in another world - in and out of sleep, sometimes seeming completely normal (but speaking constantly and seeing things). I remember at 4am one morning waking up and thinking, something has happened, the balance has shifted back in my favour. So, today, 12 days on, I consider myself one of the lucky ones. Only a tiny amount of tissue was damaged, some nerves damaged, scarring and a tiring road to recovery ahead over the next few months. Why did I escape some of the worse effects? Very quick diagnosis was the key. Every minute counts when you can see and feel an infection spreading through your body. Pumping me full of a range of antibiotics seemed to do the trick of holding the infection in place, stopping it spreading until the surgeons could get to work. I know I have been lucky - and sharing my story is to support the drive for education and immediate treatment when there is even the slightest suspicion of NF