This is the story of my husband Raymond Simone.
For our family the past two and a half years have been filled with pain, sadness and illness. Ray experimented with drugs early on in his life and although he was able to fully recover from his addiction, as a result he contracted hepatitis C. He built a new life for himself and we met on a Greek Island where we married in 1988. We returned to London, Ray started his own business and we started a family. We loved each other very much and enjoyed life together.
We had two children, and when our youngest was four years old, Ray suddenly discovered that his ankles had become swollen. He visited our local GP who sent him for blood tests. The results gave a diagnoses of hepatitis C and Ray was sent to a specialist. She informed him that he urgently needed a liver transplant or else he would not survive. For a number of reasons, we sought a second opinion at The Royal Free Hospital where the diagnosis was confirmed
Ray contacted his friends with whom he had shared his past activities, and encouraged them to get tested for hepatitis C. Sadly, many of these friends had contracted the illness too.
He was put onto the transplant waiting list. We were both very scared but Ray wanted to live his life and was very strong, especially for the children who meant everything to him. After six weeks, on October 11th 2001, a liver suddenly became available. The transplant operation was a success and so was Ray’s recovery. He started exercising regularly and became physically much stronger. The following eight years were just amazing; our love for each other was so strong and, as a family, we lived life to the full.
Then, in autumn 2009, Ray started to become very tired. After the working week, he would sleep all weekend. I begged him to go to see the doctor, but he resisted. However, one day our son Jacob noticed that Ray had turned yellow. This was enough to make Ray call the hospital. His bilirubin had soared to a dangerous 600, which resulted in him being admitted to hospital. Not only had Ray become physically ill, but also his mental state had been thrown into complete chaos.
Ray became very angry and agitated with everybody and despised being in hospital. He discharged himself even through his bilirubin levels were still very high. Over the next few weeks, his bilirubin fluctuated enormously. Alongside this, his mental chaos had developed into a massive episode of mania. Ray was having a psychotic breakdown. We deduced that the cause for the onset of psychosis might have been his reaction to taking the steroids, which had been prescribed to In May 2010, with the hope of reducing his bilirubin. The suffering that Ray endured during this period and the impact it had on our family was horrific.
Ray suddenly started to spend huge amounts of money. He sold many of his possessions, arranged a trip to Greece without telling anyone and was becoming a risk to himself and others. He was extremely ill and eventually was sectioned under the Mental Health Act and held for 28 days whilst they assessed his condition. We were told that he would become severely depressed, once the mania wore off, which it did. He subsequently slept for days, weeks and then months, waking only for short periods of time. He was seen by another specialist and we were still unsure if hepatitis C was causing all of his symptoms.
In November 2010, Ray had another biopsy, which showed that hepatitis C was attacking his transplanted liver. We were told that he was not well enough to receive another transplant. Even if he was, it is very rare to survive two liver transplants. As a family we were desperate. We knew that we didn’t have much longer to all be together. Ray was very ill and needed 24 hour care. I nursed Ray day and night, even though I still had to go out to work to earn money and look after my children and the house. At this point, Ray should have received palliative care, but it didn’t seem to be available to us. We would have all really benefited from this.
It was not until March 2012 that Ray was offered palliative care from the hospice. This was a great help to us all because they were able to manage his pain, which he had endured for two years. They were also able to ensure that he was kept comfortable. It is important for me to say, that through this terrible extended ordeal, there were close friends and some family members who were wonderfully supportive, in so many ways. Without them I would not be standing here now telling our story. I received emotional support from the charity Barnet Carers and even went on a course to learn how to live with someone with mental health problems.
The doctors could not tell us how much time Ray had left. He was a fighter. However, we were told that if hepatitis C attacks a transplanted liver, then it would deteriorate fast.
Ray was admitted into the North London Hospice in May 2012. On 18th June 2012, Ray passed away. Thanks to the wonderful palliative care, he died peacefully and that gave me a lot of comfort.
Hepatitis C is an illness which many people may not know they have.
I have been tested twice; the first time being when Ray was first diagnosed, the second time was as a result of me testing Ray’s blood for diabetes and the needle accidentally went into me. Fortunately my results were both negative. However, if I had contracted the illness then I would have wanted support and information about the virus.
Although things are improving, our lives have been cut short by this illness. My children are now aged 15 and 19 and they have been left without their Dad. They were lucky to have him the years that they did. We hope that this offers comfort to anyone reading our story.