John's Story

The following text was written by John's wife to accompany Millie Brierley's exhibition 'Care at the Leading Edge', 1999. The material is highly personal and not necessarily reflective of the experiences of other patients who took the drug. It not the type of evidence which formed the basis on which Campath-1H was approved for market.

This shows John sitting with his wife. Credit: Millie Brierley.

It was May 1998 when John first became ill and he was admitted to hospital on June 2nd. It seemed as if there wasn't any hope at all. He was seen by so many doctors who all had the same opinion, they didn't know what it was, they'd never seen anything like it before and obviously didn't know how to treat it. The massive purple/black marks on John's legs, feet, hands, arms and back seemed to be changing all the time, like looking at something under a microscope. It seemed to be moving and worsening so rapidly. He was so ill and yet no—one could say, 'ah yes, we know just what to do'. We longed for someone to say that there was a name for this, that treatment was available and yes, everything was going to be all right. Just something - anything positive to cling to.

After 3 weeks of being in hospital, John had to be transferred to the plastic surgery unit where he was treated the same as a burns patient. It wasn't burns, but the loss of skin and tissue was the same. For endless days he was bandaged like a 'mummy'. Some days his dressings took three to four hours to do. The trauma for John was intense and for us, his family, it was just as traumatic. It seemed that just as we thought nothing worse could happen to him it did. He had to have skin grafts on his elbows, both feet and on the back of his left hand. It's a year ago since everything he went through, but most of it is still too painful to even think about. I couldn't even begin to describe all that he endured - it was all so horrific.

After 8 weeks in hospital John was allowed home - the end of July. A nurse came in every day to do his dressings. He was still far from well. His feet were too painful for him to walk and were still a purple colour - we didn't know then that we'd got even worse to come. During the early hours of the morning on September 9th John said that his left foot was so cold and he was admitted to hospital on that day. After various tests we were told that the blood vessels in the foot were blocked. He was put on hepian to thin his blood and illoprost to open his veins, to hopefully get some life back into his foot, but it didn't work. On 21st September John had to have his left leg amputated just below the knee. We had never imagined when this illness started what the consequences would be, it was just too much to take in but even worse was to come. The day after he had his leg amputated his left hand became black and eight days later, on September 29th, he had to have his left arm amputated just below the elbow. It was as if we were losing him piece by piece. We managed to give each other support and our family helped us a great deal – they were there for us. John was very brave.

We were then told that the treatment that had been used hadn't done what they had hoped it would, that the breaking down of the blood vessels wouldn't stop and would eventually reach his other limbs. It was just a matter of time. It was all too bleak. I was losing my husband bit by bit and there wasn't anything anyone could do. His right foot was cold and blue. We were then told that John was to be transferred to Addenbrooke's Hospital to see Dr. Lockwood. He had got a new treatment which had a good success rate on patients with a similar thing to what John had. It was our last chance so he was transferred on 2nd October and the treatment was started. It was a new treatment. John had the treatment for six hours a day for ten days. Sadly, the damage already in his right foot couldn't be reversed and John had to lose part of his right foot. This new treatment had stopped it spreading any further though. It was a miracle it had come to a halt- Dr. Lockwod had saved his life!

John started to feel better and gradually made extremely good progress. Addenbrooke's prosthesis clinic are making him fake limbs and he has an electric wheelchair. He was discharged from hospital on 4th December and he is now an outpatient. He is learning to live a different way of life. He is extremely brave and after all that he's been through remains cheerful although everyday is a challenge.

He goes out in his chair on his own now and is learning to walk about a bit at home. He has lost three limbs and if we had seen Dr. Lockwood sooner maybe he wouldn't have lost any. We don't look back too much now though, we just look forward and take one day at a time. Everyday is a bonus as without this treatment John wouldn't be here.