My name is James, I’m 42 years old and live in Highbury, North London. Just a few months ago my life was severely threatened by NF and the subsequent onset of septicemia. However I don’t want you to suffer through my story, anxious of the outcome so let me tell you the good news right away: I have recovered fantastically well with few mental scars and even fewer physical ones.
My illness began with a small wound – maybe an insect bite? – on my elbow that appeared to get better before getting worse. But it seemed to be nothing more than a local infection and, being fit and healthy I assumed it would soon go. On Friday 14th January 2008, despite growing pain in my arm I was fit enough to change a wheel on my car. However that night I began to feel feverish. With the benefit of hindsight I realise this was the bacteria taking a severe hold in my arm but at the time I merely cursed my luck at catching flu on top of my sore elbow!
The next morning I woke up feeling faint and collapsed, banging my head in the process. This forced my fiancée to call an ambulance instead of driving me herself which probably saved my life. We know now that my blood pressure had dropped to a critical low and my major organs were starting to shut down.
At the hospital, I was, apparently, entirely lucid and coherent although I have no recollection at all. This created considerable confusion among the doctors as all the test results suggested I should be something quite different; unconscious, perhaps, or dead. The decision was taken to send me for emergency surgery on my arm to both identify and treat the infection.
I can remember vaguely going into theatre for surgery. I assumed, as had happened in the past with various orthopaedic surgeries, I’d wake up later with perhaps a sore arm, have to endure hospital food for a few days and then be home. As it turned out – and at this stage in the story I have to rely on my fiancee’s recollection – a brilliant surgeon (Ms Pardeau – thank you!) took the risk to remove a substantial amount of tissue but to try and save my arm from amputation. Although it wasn’t ever said in such terms, reading between the lines it seems the view was that there was a very high chance I would die anyway from the septicaemia, arm or no arm so they may as well try and save it in case I defeated the odds. My family were told that I was critical and that the following two days would determine whether I survived.
I was kept in an induced coma and on life-support for seven days. I can recall coming out of sedation briefly and being utterly distraught at the ventilator tube in my mouth. I had no recollection at all of events that had led me to his state and was very confused. What had I done to deserve that? Was I being punished? Take it out! Now!! I was promptly put back to sleep for my own good. Of course while I was enraged and terrified in equal measure, my family were jumping for joy (although they had the good grace not to do it in front of me).
A day or so later I was woken again and a consultant tried to explain what had happened to me in words of less than one syllable and warned me I was still very ill. I felt strangely calm about it all but decided in my mind to defy the professionals’ prognosis and set about getting well enough to leave ICU. My partner was by my side, pictures my two young children had drawn for daddy were taped to the foot of my bed and my family were camped in the hospital. Their role was fundamental to my survival. All the time I could see or hear one of them I felt anchored in the living world and much less vulnerable. My emotions were, at times, quite out of control due to a combination of my situation and the vast amounts of drugs flowing round my system. Lisa, my partner, took all I could throw at her and never flinched. Her love and compassion were incredibly motivating too although I was occasionally guilty of over-stepping. She told me how I frightened her almost to death one night when, after a healthy cocktail of morphine and ketamine, I stopped breathing for several seconds. Just as she was about raise the alarm I blew out a lung-full of air. I’d been practising the breathing exercises given to me by the consultant even while high as a hallucinating kite. I had my backside metaphorically spanked for that stunt but it was representative of my determination to get better, I suppose.
Eight days after being admitted in critical condition I was well enough to be moved to a general surgical ward and await a bed in a specialist plastic surgery unit at another hospital. How I succeeded in recovering without loss of organ function and with all my limbs in place is, bearing in mind how close to death I trod, little short of miraculous. The treatment I received in the ICU at Homerton hospital was unbelievable. Not just in terms of the clinical expertise and professionalism but also the compassion and humanity that the staff showed to me and my family. I won’t ever forget them.
I have a big chunk of my left arm missing but the skin graft is progressing fantastically well. Two of my fingers are numb due to nerve damage but in time they may improve. And frankly, who cares? It would seem such a small price to pay compared to what could have been. I’m blessed, I know that and I intend to make the most of those blessings.
I hope I don’t leave anyone with the impression that I have trivialised my illness in any way, or that I am suffering from post-traumatic stress. I’m reasonably confident neither of those things are true. It was horrible. I often wish it hadn’t happened to me. I often have moments when I feel quite sad and emotional for no particular reason. I recall moments in hospital – the really dark moments when my optimism would be pierced by a very real fear for my life or when the pain from my arm was so great, despite morphine, that it caused me to pass out. But despite all this, for the great majority of the time I realise exactly how incredibly fortunate I have been. I have a wonderful family and incredible friends. My local community has provided the kind of support and kindness one imagines only exists in works of fiction.
I hope other sufferers and their relatives who read this can take heart from my recovery and feel able to look to the future with a degree of optimism. I wish you all the best in your recovery and pray that you can find a path back to a happy and pain-free life as quickly as possible.
James Vigar 7/7/2008