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Melanie’s story

Melanie's NF journey began with flu-like symptoms and pain in her lower abdomen. Here is Melanie's story.
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The first thing I can remember is feeling really unwell. I was at work and I felt like I had really strong flu symptoms. I asked to go home and arranged to see my GP later that day. During the course of the day I felt worse and worse. I had violent vomiting and pains in my lower abdomen. My husband called my GP and they came out to see me around lunchtime. I was prescribed antibiotics after a diagnosis of a infection. By late afternoon I was so ill I went to bed. I can’t remember how many times I was sick, I was very hot and I had the worst headache and stomach pains I have ever experienced.

I woke my husband around 4am on Friday morning. He called NHS direct and explained that I had what seemed like a huge blood blister across my body. He went on to explain that my temp was 41 and that I could not stop being sick. They advised to call an ambulance but I thought it would be better to save the ambulance for somebody who really needed it.

We arrived at Pontefract General Infirmary where I was put in the triage queue. After I was assessed I was immediately taken into resuscitation. I was given morphine, as the pain was excruciating. I didn’t know what was happening at this time. I was quite out of it. As luck would have it there was a Dr who was a locum from Leeds General who told my husband he thought I had NF. He said he had text a colleague and was waiting for him to call back. I can remember lots of staff running around me and seemingly doing a lot of fussing. I had cannulas in the back of both my hands and in both my arms. My temp peaked around 42 and my blood pressure had plummeted to zero. Within one hour arrangements had been made for me to be taken to Pinderfields Hospital in Wakefield where a team of surgeons would be waiting for me. I was taken by ambulance with my husband following in his car.

At Pinderfields I was greeted by lots of medical staff all asking questions and they kept drawing across my body. I now know that they were measuring how fast the NF was spreading. My dedicated nurse asked Marc to sign a consent form for the operation and for permission to do what ever was necessary to save my life. She told him that I had Nf and that if I survived the surgery my chance of survival was about 20 – 25%. She told Marc to contact my parents, as they need to come through to see me. This was the first they knew of me being ill as they were at their home looking after my son. My dad still struggles to talk about “that phone call”. He said that it was the worst moment of his life when my mum told him that the hospital thought I would die, as I was so chronically ill.

I was taken down to surgery where I had 5 hours of surgery; my lower abdomen was debrided of the dead flesh. By this time it had spread from hip to hip. I had layers of muscle removed from just below my belly button to the top of my leg on the right hand side. My heart stopped when I was on the operating table and my liver and kidneys were failing due to the toxic shock. I had a further operation on Saturday for further debridement. I received 2 blood transfusions and IV antibiotics. After 3 days in intensive care I was moved to HDU where I was allowed visitors other than immediate family.

Every time somebody came to see me they were crying. I was still on very high doses of morphine so the reality of it didn’t really hit home and I didn’t know the events of the past few days. Over the next week I was a human pincushion, constantly having blood taken to test the cultures and see if the NF was responding to the IV antibiotics. My veins in my arms collapsed and they resorted to taking blood from my groin, my neck and the top of my feet.

After a week I was allowed to come home, I begged and begged, as it was my daughters 2nd birthday. My surgeon agreed but insisted on total bed rest for me and visits from the district nurse 4 times a day. I was absent from work for about 14 weeks and recovery seemed very slow. My liver and kidneys have suffered extensive damage, I suffer from chronic fatigue and I need further operations to reconstruct my muscles in my lower abdomen so that I can walk without pain.

I still have some way to go before I make a complete recovery but I am determined it will not beat me!

It has been very therapeutic …and emotional for me to write my story.

I have received amazing support from my family and friends and of course my NF family on Facebook.


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