Stories and Experiences.

Vanessa's story

My name is Vanessa Wright I'm 33 years old married to Paul and we have a 6-year-old son called Harry and we are expecting our 2nd baby in May.

Two years ago in September 1998 I went into hospital for a routine breast reduction, after years of back & neck ache and also the physiological problems of having large breasts.

Unfortunately I contracted an infection in the wound after surgery, five days later I was transferred to an Intensive Care Unit where I stayed for 36 days. During this time I was ventilated, I had an external pacemaker fitted and also had kidney dialysis. My whole body was in shut down. Paul was told on several occasions to say goodbye to me.

After my long sleep, I awoke to be told by Paul that I had had my left breast removed and most of my right as I had an infection. I didn't really react to the news, but I would not look at my wounds until several weeks after.

I stayed in hospital for a total of 3 months; I had to learn to write, talk and walk again, because of the trachea and muscle wastage. I also acquired very deep pressure sores on my heels; I have been told the lost tissue will never grow back.

When I came out of hospital, I felt it was all very dreamlike and I was drifting along watching myself. It was at this time I was told what I had had, "Necrotising Fasciitis" which was very rare, I didn't have a clue what it was.

I was constantly being told how lucky I was to be alive and I still believe today that I am. After about a year I started to get quite depressed, I had so many questions but no one could answer them, I was angry that there was no support available in this country, I even tried going to the cancer centre at Mount Vernon, but after 1 session with a councillor I was phoned and told they didn't think they could help me.
So I searched the internet for info on NF, unfortunately there was very little available on NF in the UK, but I did find an American Web site, this was set up by 2 survivors of NF, at last I didn't feel like a freak, there were others out there.

I spent hours going through the web site register trying to find other survivors in the UK. I started to receive and send emails to others in the UK, we all had the same idea and we wanted a support group in the UK. This is when a lady called Doreen Marsden contacted me. Doreen sadly lost her healthy 23-year-old son from NF in October 1999; this inspired Doreen to start the group.

Since that first contact with Doreen life has got somewhat better, and the more survivors I talk to and meet the easier it becomes. The support group has snowballed, we all met up in Preston in September and I organized a fund raising disco in November here in Watford. All the money we are raising will go towards helping with the group and research.

I feel that if I was diagnosed earlier I would not have lost so much tissue and I probably would have spent less time in ITU.

PROMPT DIAGNOSIS WILL INCREASE THE CHANCE OF SURVIVAL WITH MINIMAL DAMAGE TO THE PATIENT AND MINIMAL COST TO THE NHS.

Vanessa

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