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
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