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My Story My story begins when I was twenty one years old and having just given birth to a beautiful baby girl. When she was two weeks old I awoke in the night to immense pain in my abdomen. Two days later I was admitted to hospital where I was place in an isolation ward, as it was not known what was wrong with me. It turned out that I had got an infection from a small tear that had gone un-noticed and this led to Deep Vein Thrombosis in my legs causing me to be paralyzed from the waist down for several months. As the clot in the veins moved it destroyed many of the valves in the veins in my legs, (which are like minute canal lock gates), and left me with very poor circulation in my legs. At first the gave me less than a 50% chance of living. Next I was told that I would never walk again, but after many months of pain and determination I walked out of the hospital to look after my now six month old baby. As my daughter entered into her senior school education, I decided that it was time to return to work and I started a part-time job as a seamstress in our local community hospital. Life was looking good for us and for the next three years I enjoyed my life. Then one day I discovered what looked like a spot the size of a pin head on my left shin. I asked one of the nurses about this and was advised to see my doctor immediately. This small hole was over the next 17 years to dominate my life and have it's effect on my family as it grew in size. I was laid off work and after twelve months my employment was terminated on ill-health grounds as the ulcer, which was now about an inch in diameter, failed to respond to any treatment. That took 10 years to heal over. It then broke down again 2 years later and became twice the size taking another 1.5 years to heal. This time it lasted about 2 years, before breaking down once more and growing even bigger. Again another 1.5 years of suffering and once more a year or so before it really went down hill in a big way. In the early months of 2005 the ulcer broke down after having had Phlebitis and infection in my left leg, this rapidly grew to the size of my husbands hand covering the whole of my shin by two thirds of the way around my calf and none of the recognized treatments made any difference. By May the pain was extreme and as we drove on our summer holiday I asked my husband how he would feel if I was to ask for an amputation. We had talked in the past about this possibility, but this was now a reality and after he had got over the initial shock he agreed with me that it seemed the only way forward and said that he would go with me to see the doctor as I did not want to appear to be some kind on nutcase. On our return from the holiday we made an appointment to see the doctor and presented the case and the proposal to him. He agreed that it made sense and referred me to the Dermatologist at the Derbyshire Royal Infirmary, but the doctor their was less than enthusiastic about the proposal and felt that she could treat the ulcer, despite the fact that the veins we damaged and could never be repaired. I agreed to co-operate providing I was given an opportunity to see a Vascular Surgeon to find out whether the amputation was a possibility. Despite being told that the surgeon would not take any action without her approval she agreed to this. August came as I waited to see the surgeon and I was told by the dermatologist that I had Pyoderma Gangrenosum, a condition where the immune system goes into reverse and the body instead of healing a wound attacks the flesh around the wound causing it to grow, this being the reason why the ulcer had grown out of proportion recently. This condition meant that even if the surgeon agreed to the amputation it could not be done until the Pyoderma had been sorted out as any wound created by the amputation would not heal, but rather eat back from the wound. The treatment was initially with Steroids, which brought in other concerns as it was pointed out that this could bring on Diabetes and diabetes is an illness that was common in my family but up to then I had not had. Reluctantly I agreed to take this medication providing we could still see the surgeon to find out whether the way would be open if the treatment worked. This was my darkest hour, as I sat in the car and cried. What was the point of living, of going on any more. My only hope of a near normal life free from pain, infection and continual dressings had been blocked. The surgeon saw me soon afterwards and explained that
the amputation would have to be done above the knee as there was not sufficient
good flesh to create a useful stump below the knee. He then went on to paint a
black picture explaining the down-side of the procedure, that I would be
confined to a wheelchair for life, etc. I answered that even if I never walked
again I would be free from pain and infections, I would be able to have a bath
or shower, I could go swimming and travel around the world and have a quality of
life that had vanished many years since. Even as he described it, it had to be a
better life than the one I was living. Once he was sure that I had thought it
through he painted a different picture of possibilities with modern prosthetic
limbs, wheelchair friendly zones and said that most of his patients had the
amputation as a last resort and they often commented after the operation that
they wished they had done it years before. Very few came to him, as I did,
asking for this to be done. But now I had to wait until the Pyoderma was
resolved before I could go forward. Could things get any worse, yes, as in October I was sent to hospital having a blood clot in my good leg. I returned home with Heparin that I had to inject into my stomach area and yet more pills to take. The Steroids had had an effect and the area around the back of my leg had healed over, but the dermatologist was still not sure and suggested a three month course of Cyclosporine with the promise that if this did not have a major effect she would agree to the amputation. Unfortunately this medication pushed up my blood pressure, so more tablets were introduced to control this. After two months it was obvious that there was no change and the dermatologist decided to stop the Steroids and Cyclosporine and if the wound did not rapidly get worse, it would be assumed that the Pyoderma had been dealt with, making it reasonably be safe to go forward with the operation. It was now February 2006 and we managed to get a visit to the surgeon once more, but there were yet more delays. The surgeon wanted a six month period after the thrombosis before he would do the operation. This meant that I now had to wait until May before we could move forward and in the mean time I had to hope that nothing else went wrong. I counted the days down and eventually May 15th arrived and admission to the hospital was made. I had a room to myself and settled in ready for the operation on the next day. A big blue arrow with AKA next to it was drawn on my left leg. May 16th arrived, but disappointment came as eventually at 7pm the operation was cancelled as a previous operation had had complications. Promises were made that it would be done the next day, but once more due to Road Accidents the operation was postponed at 8pm. Thursday May 18th came and the surgeon was insistent that it would be done today. I sat and waited. Midday came and as I waited in my room with my husband I saw a trolley arrive outside my door. I dared not ask, but Cedric said, “Is that for Carol?” When I heard the reply that it was, I shouted out, “YES” and threw my arms in the air. The porter, looking some what amazed, said, “That is the first time anyone has got excited about getting on my trolley.” Down to the theatre we went, my redemption was nigh.
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