Personal Experiences

Personal Experiences 2017-09-27T20:53:29+00:00

Personal experiences

This section contains personal experiences of people affected by necrotising fasciitis. If you have a story you’d like to share, please contact us.

Below are just snippets, please click on the names to find out more

Alan

I got a small cut on the side of my index finger – within 36-48hrs I was rushed into hospital with Septicaemia. My finger was taken off to the knuckle, and then several days later I got Necrotising Fasciitis.

I was taken down for further surgery to have my knuckle and flesh taken away. I had further surgery and had my arm cut from the wrist to the elbow down to the muscle, it was left open so the bugs could eat the blood.

Anthony

Hello my name is Helen, I live in Chesterfield in Derbyshire with my mum and dad and I am seventeen years old. My story begins with my dad having routine day surgery for removal of varicose veins on July 9th 2009 on his right leg. His surgery was very uneventful, we picked him up at about half seven that night and sat down to what I didn’t realise would be the last meal together as a family for five weeks.

Friday morning he began to shiver and shake, was continually feeling hot and cold and just generally wasn’t well. My mum was getting more and more worried about him and called for a doctor, at this point he was rushing to the bathroom to be sick. He spent the majority of that day in bed and I hoped the sickness injection and antibiotics prescribed by the doctor would make him feel better.

Bart

The beginning of my story was the day I thought I had piles, I went to the chemist and bought some cream. However this didn’t work. So I went to see my doctor. He said I had a swollen area near my anus and prescribed anti-inflammatory tablets. These didn’t work either.

Becky

My NF nightmare started on 15th February 2013,my husband Chris and I decided we were going to swap bedrooms for our twin daughters as they needed the bigger bedroom. We dismantled and moved their bunk beds, I helped to carry the bunk bed resting it on my chest and pushing up with my arms. The next morning Saturday the 16th I woke up in pain in my left shoulder/chest area I had been laying on it when I woke up so I spent the rest of that day presuming I had slept funny, the pain was increasing but at this point I wasn’t overly concerned. That night I went to bed taking pain relief hoping the pain would be gone when I woke up.

Bob

I moved to New Zealand 6 and a half years ago and almost immediately I started to get boils and spots which didn’t occur in the UK (maybe the occasional spot). I saw my GP and received various courses of antibiotics which helped to clear up the infections when they appeared, but didn’t stop them reappearing.

Carole

The following morning I woke up, got out of bed and felt something warm and brown leakage running down my leg and the smell i have never smelt anything like it before.

My husband rang for a district nurse to visit but they said it could be 3-4pm before anybody could get to me, so I just stayed in bed.

When the nurse arrived she took a look at my wound and the smell and they phoned the hospital, they told them to admit me back into hospital and they phoned for a ambulance.When I got to the hospital they examined me and I was put on iv antibiotics, they then just left me for 6 days with just putting new dressings on as I still had leakage of brown gunge and also started with a red area on my stomach.

Christopher

Later on that day a simple knock on Christopher’s elbow started a chain of events, which was to become a living nightmare.

That night Christopher’s arm became sore a blister appeared where he had knocked his elbow earlier in the day. Not being the type of person to complain, Christopher just ignored the pain and to bed. We didn’t start to get unduly concerned until the Monday lunchtime, by this time his arm was extremely painful and has swollen up alarmingly.

Danny

My story starts out as a normal day. I’d been offered overtime at work, it was Sunday 12th October 2008. I am a lorry driver and left my depot that morning to go to Bristol but on my way down my ankle started to swell up and was really painful it felt a bit like I’d gone over on it, anyway I made it to Bristol and asked the company I was delivering to for a first aider. He packed my ankle in ice I took some pain killers and headed home feeling a bit better, but on the way back I felt the pain again only worse. How I made it back is a mystery but I remember ringing my brother to pick me up to go straight to hospital.

David

All started on Wednesday 8th January 2003, My dad went to work as usual and managed to cut his finger, not a serious cut I might add, he cleaned it up and carried on his normal duties, going to the gym etc.

On Friday 10th January he started to feel unwell, thought it was just a cold which got worse over the weekend with him thinking he had got the Flu, he spent all Saturday in bed and managed to get up for a bit on Sunday morning, he looked frail, tired and very poorly, bad case of the Flu we all thought! That night everything changed…

Debbie

Apparently, the day after my admission, still undiagnosed, I began to go into toxic shock as the toxins began to affect my major organs and my blood pressure dropped to zero. Doctors and other medical staff began to frantically try to get lines into my body and things looked very grim. I was taken down to theatre immediately and my leg cut open and it was then that the diagnosis was changed from DVT to NF. My leg was debrided of infected tissue and I was put in a morphine-induced coma on ICU. Small patches of black tissue on my fingers and trunk were a concern and doctors would only tell my family I had a small chance of survival.

Dic

I was admitted to Cardiff Hospital in January 1999 with severe flu-like symptoms. Fortunately, the surgeon was able to diagnose NF and he performed three operations in twelve hours to remove the rotting flesh. However, the bacteria were still very active, my body went into toxic shock and my vital organs began to close down. My family were advised to anticipate the worst.

Elaine

I fell in love with the most remarkable man in the world and we got married on the 5th June 2004. While on honeymoon I conceived our first child – we were thrilled and overjoyed. After a small complicated pregnancy our daughter Chloe was born by emergency c – section on the 14th April 2005. 2 days after the birth I was discharged from the hospital and within a few days I noticed what was diagnosed as a ‘bruised area’ appeared above my c-section wound.

A few more days passed and a Doctor called to see me. He prescribed antibiotics, which I took immediately, and that night I felt a popping sensation, puss and a foul smelling fluid leaked everywhere. My husband called in the midwife and I was re-admitted into hospital. Immediately on admission I was assessed, assessed and assessed and eventually transferred to high dependency unit. I was put on more antibiotics and fluids and given 24 hr care, but still we did not know what was going on.

Elias

It was the busiest weekend of my life – I was being filmed by the BBC on the Saturday. On the Sunday I was at the reopening of my local park where I had been chairing its restoration. On both days I had a slight pain in my groin area – it was hot and I didn’t think nothing of it as it wasn’t that painful. That evening Sunday 22nd May 2011 I got home and noticed I had got a swelling which was growing at an alarming rate. I rang a friend who advised me to ring the out of hours surgery. The Doctor came round to my house and I was told to get to A&E as soon as possible. I remembering asking if I could just have some antibiotics but he was firm that I needed to get to hospital as soon as I possibly can. In retrospect if I had not obeyed his instructions I would have been dead by now.

Emma

Around 8:30am that morning a consultant came and took one look at the wound (the purple bruise was now protruding from my stomach and was green) and confirmed they needed to start me on antibiotics for Septicemia there was then numerous blood tests taken from me and 45 minutes later I was then taken to a side ward and was told by the consultant I was being transferred to Addenbrookes hospital and the ambulance was on it’s way. I was really scared at this point as I did not know what was really happening to me. I arrived at Addenbrookes forty minutes later and was taken straight to the resuscitation area where more blood was taken and also I was given a CT scan to check my organs weren’t failing.

James

The next morning I woke up feeling faint and collapsed, banging my head in the process. This forced my fiancée to call an ambulance instead of driving me herself which probably saved my life. We know now that my blood pressure had dropped to a critical low and my major organs were starting to shut down.

At the hospital, I was, apparently, entirely lucid and coherent although I have no recollection at all. This created considerable confusion among the doctors as all the test results suggested I should be something quite different; unconscious, perhaps, or dead. The decision was taken to send me for emergency surgery on my arm to both identify and treat the infection.

Jennifer

My name is Jennifer I was 47 years old when I contracted NF. I really have no idea how I got the bacteria in my leg. I was in good health no red flags.

I was walking through a city park with my son. I remember I did not have socks on as I sat by the side of the creek worrying about snakes. It was Nov 09 and 72 degrees outside. Beautiful warm day. My pants where wet from the creek and I had scratches on my ankle from the tall grass. When we left and I had a bad feeling. But proceeded to the store, my wet pants dragging on the floor.

John

First thing in the morning we took the prescription to the chemist who could not read the writing. As our Health Centre is open 24 hours we took the prescription there and showed it to the doctor on duty. He looked at it, guessed and said, “I think that’s what it says” and gave us another prescription which we took back to the chemist which they made up immediately.

Throughout Sunday my condition worsened and come late afternoon we called our Health Centre for another visit from the Doctor. We were asked to go to the Health Centre as no Doctor was available for house calls at that time. I was taken by my family to the Health Centre where I was examined.

Katy

8 weeks ago I developed NF as a result of an emergency C Section. I gave birth to my little girl 7 weeks early and little did I know I would spend the first few weeks of her life trying to recover from this horrible disease.

Kevin

In my own mind I queried why if it were only minor why another hospital when we had a very good up to date laboratory. So I paid them a visit and was given the same information as over the phone. Kevin had already gone to Heartland’s in Birmingham so I decided to follow.

When I got there and found the ward that Kevin was on, the doctors had already admitted him and were doing tests. After 1½ hours I was allowed in to see the doctor, he told me that Kevin needed a life saving operation – without it he would die, and even with it he could still die.

Kevin

Late in February of 2006, I got an ingrown hair on my bottom. Other than making sitting a bit uncomfortable, I didn’t think too much about it.

About a week later, I started to have flu-like symptoms. “Great”, I thought, ” I’ve got a sore bottom AND the flu, just my luck!”. By Thursday the 2nd of March, I was starting to feel pretty miserable. I went in to work that day, but was sent home at lunchtime by my manager. I went home, crawled into bed and slept. The next day, I wasn’t feeling any better, so I decided to go and see the doctor..

Kirby

Hello, I would like to tell my story.

I was 17 with a 9 month old little girl, I had been planning a christening for months, trying to make it perfect for my little girl. Me, my family and friends had planned everything for the 8th June 2014…

Lesley

My name is Lesley and I live with my husband Ian and my young son, Xander in Northamptonshire. In June 2012, following 2 years of unsuccessfully living with Colitis (following the birth of our son), I underwent surgery to have a stoma fitted. At 36 years old, this was the last thing I wanted but I’d run out of feasible options. If a stoma was all I had had to contend with last year, life today would be a lot easier…

Liam

This story is about our son Liam who’s 2. It all started on September 9th 2005, Liam was playing happily in the garden when he let out the most piercing scream. After picking him up Liam was complaining of his left arm hurting I looked for grazes, cuts and bites but couldn’t find any, only a slight swelling around the wrist of his left arm.

Mal

Half an hour later it was still hurting and my leg started to stiffen up. I was beginning to be concerned as I could hardly walk. I thought that it could be a deep vein thrombosis. The pain was getting worse and I thought about getting to the hospital, at this point I realised that I would have trouble operating the clutch pedal in my car.

At 2pm I phoned NHS Direct, they told me that if I required an ambulance I must dial 999. So that is what I did and it arrived about 12 mins later. The paramedics asked me a few questions and said that they would be taking me to the A&E Department at Kingsmill in Mansfield. As we travelled the paramedic asked questions and filled in his forms.

Melanie

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 viral infection. By late afternoon I was so ill I went to bed. I carnt remember how many times I was sick, I was very hot and I had the worst headache and stomach pains I have ever experienced.

Patricia

I lost my Darling Wife Patricia, to the infection known as “Necrotising Fasciitis” on 1st September 2004 at 02.00am – an infection I had never ever heard of until then.

The story starts on the evening of the 18th August 2004.

We had thought that Patricia’s problem was a case of mild food poisoning initially, following an evening meal of ham salad, but after 4 days there was no improvement, in actual fact a marked deterioration, which started with nausea and diarrhoea and a sense of lethargy.

Patrick

I had enjoyed perfect health up until April 2004. On April 27th I noticed a slight pain in my right shoulder. I went into work in Cardiff, during the day a colleague performed an ultrasound examination of my shoulder but he found no abnormality.

Later that afternoon I went to Prince Charles hospital in Merthyr Tydfil where I worked as a consultant for an afternoon a week. After work a colleague asked whether I would like to go for a drink with him however by this stage I was in some considerable pain and instead I took myself along to the A&E department. X rays were taken but again no abnormality was seen.

Russell

It all happened towards the end of March 2013 . It was a normal day, except for one thing. I had finished the night shift, and as per usual I wanted to be up nice and early so I could spend some time with my family before going back to work. The difference was today, I couldn’t pull myself out of bed. I had a massive pain in my groin and I felt really woozy.

Sally

Just before 9 am a friend popped in and we were all getting very concerned. I suggested we call the ward I was on and by good fortune my surgeon was by the phone. “Bring her straight in I will see her now ” he said but my husband told him it was impossible to move me, he needed an ambulance. “Try ” he said and for one of the first times in my life we thanked God I had a wheelchair and the riser chair and with my friend’s help my husband got me into the car and up to the ward where my surgeon was waiting.

He did not know what was wrong except he could see I was very ill and had me admitted straight away for a CT scan and tests. There was no problem with the wound . I was put on a drip to balance my fluids . The CT scan showed that the kidneys were not damaged but were not functioning.

Steve

May 1998 a Saturday, I had just watched the Arsenal clinch the Premiership by beating Everton 4-0, I felt great dancing on the green outside my local pub, my friends have mentioned this as the last thing they remember about me before hearing that I was hospitalised.

That evening I went home and my partner Linda asked me if I would be able to take her to Heathrow airport on the Sunday morning as she was going home to see her family in Ireland, this, I told her was not a problem.

Tony

Tony did furniture removals, often from England to France, where we have a house. On 3rd July 2008, he picked up a load from London, destined for Lyon to be delivered on Monday 7th July. He then travelled down with two loaders to Cannes to pick up a return load on Wednesday 9th July.

He sustained a cut on his right arm while loading in London, but this was quite common and did not give any cause for alarm, although I did notice it had happened. He caught the evening ferry from Newhaven to Dieppe on Friday 4th July.

Vanessa

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.

Wraye

Hello, my name is Wraye and I have been living and working on the European continent for almost 30 years. I now live in Bonn, Germany

I raised a family here and was always active in sport. I never had any major health issue until I was diagnosed – aged 50 -with breast cancer at the end of 2012. I was sent into surgery straight away and chemotherapy followed shortly after that.

alanAlan’s Story

Hello, I am Alan.

I got a small cut on the side of my index finger – within 36-48hrs I was rushed into hospital with Septicaemia. My finger was taken off to the knuckle, and then several days later I got Necrotising Fasciitis.

I was taken down for further surgery to have my knuckle and flesh taken away. I had further surgery and had my arm cut from the wrist to the elbow down to the muscle, it was left open so the bugs could eat the blood.

I have been very lucky – I have been given a second chance to live. This happened February 2000; I am getting there slowly.

If any person would like to have a chat I will be happy to help in any way I can

anthonyandhelenAnthony’s story

Hello my name is Helen, I live in Chesterfield in Derbyshire with my mum and dad and I am seventeen years old. My story begins with my dad having routine day surgery for removal of varicose veins on July 9th 2009 on his right leg. His surgery was very uneventful, we picked him up at about half seven that night and sat down to what I didn’t realise would be the last meal together as a family for five weeks.

Friday morning he began to shiver and shake, was continually feeling hot and cold and just generally wasn’t well. My mum was getting more and more worried about him and called for a doctor, at this point he was rushing to the bathroom to be sick. He spent the majority of that day in bed and I hoped the sickness injection and antibiotics prescribed by the doctor would make him feel better.

Saturday morning, I left my dad to go to Hull University Open day with a friend. I told my mum that if she needed me to come home, I would straight away. At approximately half past one, I received a text from my uncle telling me I needed to come home immediately. No one told me anything, I had no idea what to expect or how ill my dad had become. I arrived at the Royal Hospital in Chesterfield at four pm to a side room in HDU full of familiar faces. I asked them what had happened but no one would tell me. A few minutes later one of the nurses from the Post Anaesthetic Care Unit came and fetched me to take me through to my mum who was in the theatre reception area. She told me that dad was very poorly and he had a flesh eating bug called Necrotising Fasciitis and had, had major debridement surgery to the top of his leg and was now on a life support machine. At this point, I had no idea what Necrotising Fasciitis was, or how much the surgeons had taken away from his leg. Mum wanted me to go and see him and I just froze and burst into tears. I could not face seeing him laid there, I did not want to believe it. The doctors told us that the next twenty four hours were critical and we spent the night at his bed side – I never let go off his hand once.

Unbeknown to me, by the time my dad had reached hospital he was already in multiple organ failure, had septicaemia and was deteriorating very rapidly.

Over the next nine days, my dad remained on the life support machine and by Wednesday he had developed ventilator assisted pneumonia and he was put on a dialysis machine to help cleanse his blood of the deadly toxins. There were so many times when the doctors thought he would not make it but I never once gave up hope, I knew he would make it; he had too.

After spending day in day out at the hospital, studying his monitors and wondering whether today would be the day they would wake him up, on Monday 20th July at 6:30 am the anaesthetists turned off the sedation and began the process of waking him up. Mum and I were at his bedside for 7am and hoped and prayed that he would open his eyes and recognise us. During the next few hours, he slowly began to resemble the dad we all knew and loved even if he lost a massive amount of weight and looked ten years older. He looked extremely weak and frail but we were so relieved he had made it through such a bleak beginning yet part of us knew that our journey had only just begun. That evening he was transferred to the high Dependency Unit where he remained until he was moved onto a general ward. Two weeks later he was transferred to the Northern General Hospital in Sheffield for extensive plastic surgery on his leg.

My mum contacted Doreen after researching Necrotising Fasciitis on the internet and came across the Lee Spark Foundation and she was very grateful for the support she received. I personally made a conscious decision that I wanted to help raise awareness and funds for this deserving charity as it will always be close to my heart.

It’s now six months after my dad contracted NF, it lives with us every day. However we are coming to terms with what’s happened and if anything it has made me a stronger person and as a family, we know that we are extremely lucky that my dad has survived.

bartBart’s story

The beginning of my story was the day I thought I had piles, I went to the chemist and bought some cream. However this didn’t work. So I went to see my doctor. He said I had a swollen area near my anus and prescribed anti-inflammatory tablets. These didn’t work either.

I went back again and the surgery was full. I had to stand and sweat was dripping off me. This time he prescribed antibiotics. After two days I rang my doctor as I could hardly walk and he booked me into the hospital the same day. I was taken to the operating theatre to have what they thought was an abscess drained.

My wife received a phone call at work to say that I was in intensive care. I had necrotising fasciitis. I had a large area of flesh removed and was on morphine. I had been given a colostomy system and had a catheter and loads of tubes everywhere. They had to keep taking me back to theatre to cut off a little more dead flesh. I was in Dewsbury hospital for 7 weeks and was transferred to Pinderfields in Wakefield for a skin graft. This didn’t take.

I was in and out of hospital quite a lot. The wound healed up but burst open again and again. The colostomy was reversed, but I still have infections, which break open in the area of the wound. The hospital is baffled.

5 years on – I’m still alive. I was lucky.

Bart

bobBob’s story

It was really great to find your site. I wish I had before I contracted Necrotising Fasciitis in late July last year. I hope you won’t mind me sharing my experiences with you.

I moved to New Zealand 6 and a half years ago and almost immediately I started to get boils and spots which didn’t occur in the UK (maybe the occasional spot). I saw my GP and received various courses of antibiotics which helped to clear up the infections when they appeared, but didn’t stop them reappearing.

Then in late July last year while at work I got a headache which got worse. I went home and stayed there for 3 days feeling increasingly unwell. I didn’t go to the doctor at this stage because I was feeling lethargic, headache and my body was also aching. Adverts on tv were telling us not to visit our GP’s because of swine flu infection risk if suffering flu like symptoms. Well during the monday night I could not sleep and started to feel pain in my right leg, in the morning I went to the emergency doctor. I was given ECG and various tests and it was found that my blood pressure was very low.

I was transported to Middlemore hospital in South Auckland where more tests were done. The pain was steadily increasing and I was given morphine, but only when my bp increased.

I have no idea how much time passed, but I was feeling awful by this time and the morphine was making me drowsy. While I was lying in a side ward I found an abscess on my upper right thigh it was purple and the discolouration had started creeping down my leg. I called the doctor who it appeared knew the symptoms immediately. He informed me and I had time to make a phonecall.

My next memory is awaking in ICU days later feeling bewildered. My first visitor was my brother Norman who had come over from Scotland with the possibility of having to arrange a funeral. He didn’t know how I was progressing until he had a stop over in Dhubai and spoke with my friend who told him that I was out of immediate danger.

I had received debridement of my right leg from my upper right thigh down to the lower calf, a number of skin grafts during more than 10 visits to theatre. My stay in hospital lasted 8 weeks and my time off work totalled almost 4 months.

The whole experience was very stressful and has made me extremely emotional. I had never heard of Necrotising fasciitis before getting it and have read a number of articles and have seen pictures of other sufferers since. The possible consequences were so severe. I feel so fortunate.

I owe the staff at Middlemore my life and will forever be grateful to them and my friends for their support during a most unpleasant time.

Robert Christie

Due to the sometimes, unpleasant nature of Necrotising Fasciitis, we have given you the choice as to whether you would like to see the personal pictures that Bob has kindly shared with us. Please be warned, they are very graphic. View Bob’s pictures.

caroleCarole’s story

Hi my name is carole pearson i live in bradford west yorkshire i live with my husband jason i have 3 children i am writing to tell you my story it all started when i found out i was pregnant with my 4th pregnancy i started getting bad stomach pains i went to see my GP who sent me to the hospital i was examined by and they told me to come back for a ultra sound scan.

I returned back 2 days later which was the 20th june 2007.I had a scan done they asked me to have a blood test to see how much hormone i had.

I returned back 2 days later for another blood test, when i returned back on 22nd I had to wait 3 hours for the result of my blood. I knew by the look on there faces it was not good news they said my hormone level had not gone up much and suspected i was having a ectopic pregnancy, so they admitted me into hospital and wanted to do a laparotomy.

They starved me so i could have the surgery done that day, then it got to 8pm and they told me my surgery would be done the next morning.

The 23rd of june came and I went down for my surgery.

I was put to sleep when I came round I can remember being in a bit of pain and really sore, some of my family came to see me but nobody had been to tell me anything about my surgery.

My husband jason went to ask them about my surgery and they said they was nothing in my tube that the baby was in my womb and that they just closed me back up.

I felt ok on the sunday and on the monday i was transferred to a different ward as I was going home the next day as they needed my bed the following morning.

They came round at 6am and took my temp and it was high, but they still discharged me from that ward. That was the 27th june, when I got discharged they never told me when to get my stitches out or if a district nurse would visit me at home!

I was still really sore and felt quite unwell on the 28th.

I got up and felt even more unwell, i told my husband and he told me to go back to bed so i did. By the time it was 5pm and was I still in bed fast asleep he became really worried about me and he decided to call the GP surgery and ask for a doctor to visit me, he was told to take me up to the surgery as with me having stitches if they needed to be taken out then they had the stuff there to take them out.

I protested at first as I was really tired but was told by my husband I had to go which I knew was true.

We got a taxi to the surgery, my doctor told me I had an infection in my wound and gave me some antibiotics.

I got home and went back to bed.

The following morning I woke up, got out of bed and felt something warm and brown leakage running down my leg and the smell i have never smelt anything like it before.

My husband rang for a district nurse to visit but they said it could be 3-4pm before anybody could get to me, so I just stayed in bed.

When the nurse arrived she took a look at my wound and the smell and they phoned the hospital, they told them to admit me back into hospital and they phoned for a ambulance.When I got to the hospital they examined me and I was put on iv antibiotics, they then just left me for 6 days with just putting new dressings on as I still had leakage of brown gunge and also started with a red area on my stomach.

On the 4th july i went for another ultra sound scan and it confirmed i was miscarrying our baby.

Our world had fallen apart. When we got back up on to the ward I was seen by a wound care nurse. She asked how long my stomach had been red and said she thought i had NECROTISING FASCIITIS. She then asked for a consultant to come and see me, Mr Morrison came to see me and my worst fear was confirmed it was NECROTISING FASCIITIS.

He told me i needed surgery, all I wanted was my husband to be there, so the hospital contacted my husband and asked him to come as soon as possible.

My husband got really scared as he didn’t know what to expect when he arrived he was met by Mr Morrison who explained to him what it was.

At first I didn’t want the surgery, but that was just shock he told my husband, if I didn’t have the operation he would be taking me home in a box!

My husband, children and family were devastated, but then I signed the consent form. Mr Morrison came and collected me from the ward, as he didn’t have time to wait for a porter.

I was put to sleep and felt in good hands when I went to my new ward I was met by all my family.

I was told I would have to go back into surgery 2 days after for some more to be cut away.

On July 6th I went back into surgery for some more cut away, I was then fitted with a vac dressing what pain that was! I was on that ward for 3 weeks then a plastic surgeon came to see me and said he was going to perform a skin graft on me the following week and took the vac dressing off and let me go home for the weekend.

That was lovely, I returned back to the hospital for the skin graft on the wednesday 25th July.

I had the surgery done the same day. When I came round I had a small vac dressing on the doner site was more painful then where they put my new skin after 4 days they took the vac dressing off to see how much the new skin had took.

50% had took, they let me come home on the 31st July in the care of the district nurses, they come twice a day.

At first my wound was 36cm long 4cm wide and 4cm deep. I got discharged from the district nurses in February 2008. I returned back to work in march, I am still having problems with it, I keep on getting infection’s in my scar.

I have just finished antibiotics and have to use antibiotics cream, at the moment my scar had broken down again in two places, every time I get a infection I think i’m getting NF again but suppose I will always think that I just owe my life to that wound care nurse Vicki who came to see me that day. I cannot thank her enough.

If anybody would like to contact me you can ask doreen to pass your details on to me.

Thank you for letting me to tell my story, before I got NF I didn’t even know any thing about this dreadful disease.

with love

carole pearson

christopherChristophers’s story

Saturday January 17th 1998 and the day began as any other. My husband Christopher had gone to his parents home to help with some odd jobs around their house, he took our ten year old son Matthew with him while I stayed at home with our other two children, Amy aged eight and Emily aged three.

Later on that day a simple knock on Christopher’s elbow started a chain of events, which was to become a living nightmare.

That night Christopher’s arm became sore a blister appeared where he had knocked his elbow earlier in the day. Not being the type of person to complain, Christopher just ignored the pain and to bed. We didn’t start to get unduly concerned until the Monday lunchtime, by this time his arm was extremely painful and has swollen up alarmingly.

It was also badly bruised and I suspected he might of broken it. We thought we’d better go to our nearest casualty department at Singleton Hospital to have it out. The doctors didn’t think that any bones were broken and diagnosed an infection.

As Singleton Hospital doesn’t have the facilities, we were sent to Morriston Hospital for Christopher’s arm to be x-rayed. There they confirmed that no bones were broken and we were sent home.

The following morning Christopher was in excruciating pain with his arm, but to add to his discomfort he also began to feel unwell. As the day wore on his temperature rose and he started to vomit. I was starting to get very concerned about his condition and against Christopher’s wishes I phoned for the doctor.

The doctor thought Christopher was showing the symptoms of flu but he also prescribed penicillin for the infection in his arm. I was relieved that there was nothing to worry about and that Christopher would feel better in a few days. IF ONLY I’D KNOWN WHAT LAY AHEAD!

Looking back I am relieved that my son Matthew had stayed off from school with a flare-up of eczema on that Wednesday. For if he hadn’t been home, his daddy might not have be with us today! Although I didn’t want to go, I really needed to go into Swansea that morning. Christopher assured that he would be okay so I went, promising not to be long.

I phoned home just to check that everyone was okay, Matthew although calm, sounded distraught. What he told me sent me straight into a panic. ‘Daddy’s not well, he’s turned a funny blue colour! ‘My heart beating, raced home. I couldn’t get there quick enough. I didn’t know what to think, could Christopher be that ill? No, surely not, he only had the flu.

On my arrival at home, I could see indeed wasn’t very well. Feeling bewildered and knowing what to do, I phoned my doctors surgery for advice. He couldn’t be that ill surely? Then Christopher having difficulties in breathing! What on earth was happening? The nurse at the surgery told me that she was phoning for an ambulance.

The ambulance arrived within minutes, after asking a few questions they whisked us off to Morriston Hospital. Why was the blue light on the ambulance flashing?

On our arrival at the hospital, Christopher was whisked straight away, I was told to give his details and wait in the waiting room. What on earth was happening to my husband? After what seemed like an eternity and in reality was only a few more moments, the sister took me in to the relative’s room.

There she explained that they didn’t know what was wrong with Christopher, but that he was an extremely ill man. I was bewildered and confused, the sister went on to explain that Christopher had been taken up to the Intensive Care Unit. When I saw Christopher on the intensive care unit I was shocked at how quickly his condition had deteriorated, at this point he was conscious but his breathing was laboured and he was on oxygen.

The doctors requested that I leave for a few moments so that they could examine him, I didn’t want to leave his side but I realised that I had to allow the doctors to do their work. After a short time the nurse came and took me back into Christopher, the scene that met me as I walked onto the unit was like a scene from a horror film. Christopher had collapsed, his heart had stopped and the nurses were frantically performing CPR on him.

I just stood there screaming! Although I didn’t want to leave him ,the nurse insisted and took me back to all the family who were in the sister’s office. Christopher’s heart stopped three times in total, the medical staff brought him back each time. He was so very ill and not expected to last the night.

When the doctors accompanied by a nurse entered the sisters office and closed the door, I knew it was bad news. All the family listened in disbelief, Christopher had been placed on a Life Support Machine. We were all in a state of shock as we were told to take it minute by minute. All Christopher’s organs were failing, his body being completely overwhelmed with toxins in his blood.

At this point the doctors were baffled, they didn’t know what was causing his condition to deteriorate so quickly was in complete denial, This nightmare couldn’t be happening. The nurse took me in to see Christopher, he was unconscious and connected to a frightening amount of tubes and wires. The monitors continually bleeped, This wasn’t my Christopher laying on that bed. He was unrecognisable, all red and swollen.

Again the doctors called all the family together, this time the news was worse. They had the results of their tests. NECROTISING FASCIITIS, What on earth was that! I didn’t understand. The doctors face was grim as he went on to explain that it was the flesh-eating bug which had been reported in the media. FLESH EATING BUG! I was now really frightened for Christopher as the realisation of how desperately ill he really was sunk in.

The consultant explained that the disease was caused by Streptococcus Bacteria and attacks living tissue at a rate of a Foot (30cm) an hour. Time was of the essence. The consultants wanted to operate, Christopher’s blood pressure was dangerously low and his whole system was being systematically poisoned. He was so weak that the doctors warned us that he might not be strong enough to withstand the operation.

They advised that amputation of the arm was the only answer to rid Christopher’s body of the Flesh-Eating Bug that was advancing at a rapid rate. Quick action could mean the difference between ‘only’ losing his arm or losing his life. What choice did I have but to sign the consent form?

I waited for what seemed like an eternity for the operation to be over. Fight Christopher! Don’t leave us, I love you, the children love you, you have to be strong and FIGHT! These thoughts raced through my head. When Christopher was brought back to the intensive therapy unit, I couldn’t believe what I was seeing Christopher still had his arm, It hadn’t been amputated.

What was happening, I was elated but confused at the same time. The surgeons said that they had succeeded in removing only the flesh on Christopher’s arm that had been infected with the Necrotising Fasciitis. They had removed approximately nine inches of flesh; this wound we were told would need a skin graft at a later date.

I was so happy. Now the infection had been cut away, I thought that Christopher would soon be out of danger. My jubilation was soon deflated as the consultants told me not to build my hopes up Christopher was still critically ill and not yet out of danger.

Two weeks later Christopher’s condition still hadn’t improved , he remained critical and was still attached to the life support machine. I was exhausted and emotionally drained felt so helpless watching the machine breathing for him, every time an alarm on the monitors would bleep, my heart would sink. As time went on I started to belief that the longer Christopher was attached to the ventilator the stronger he was getting he had survived against all the odds.

I was now feeling very optimistic it would only be a matter of time before he would be well again. The doctors dropped a bombshell! They explained that the longer that Christopher was attached to the life support machine the worse the situation was. DEVASTATION!

I couldn’t take much more, what an emotional rollercoaster! Even though I had all my family offering emotional support, felt so alone.

The doctors couldn’t seem to rid his body of the poisonous toxins that had overtaken his system. Even though the odds were still heavily stacked against him surviving, the doctors and nurses never give up. As a last resort they decided to try a new trial drug to eliminate the toxic poisons in his body, and to stabilise his alarmingly fluctuating blood pressure.

No one knew whether Christopher was receiving the actual drug or a placebo, but slowly his condition started to improve. Eventually after another three weeks of uncertainty the doctors thought that Christopher might be strong enough to be weaned off the live support machine. With every small improvement I became more optimistic, every little frown he made meant that Christopher was still fighting.

At last the day arrived when the ventilator was to be completely removed, everyone was very apprehensive, could Christopher breath on his own? SUCCESS! Christopher finally came back to me on his Fortieth birthday!

It has been hard work but Christopher is slowly recovering. He will never be the fit healthy man he was, but even though he is now classed as disabled he remains cheerful and optimistic. The whole episode seems like a bad dream, who could have thought that a simple knock on the arm could cause such heartache! Only flu.

There she explained that they didn’t know what was wrong with Christopher, but that he was an extremely ill man. I was bewildered and confused, the sister went on to explain that Christopher had been taken up to the Intensive Care Unit. When I saw Christopher on the intensive care unit I was shocked at how quickly his condition had deteriorated, at this point he was conscious but his breathing was laboured and he was on oxygen.

I’ll never say only flu again !!!

dannyDanny’s story

My name’s Danny Burnell and at the time of this happening I was a 29 year old lorry driver.

My story starts out as a normal day. I’d been offered overtime at work, it was Sunday 12th October 2008. I am a lorry driver and left my depot that morning to go to Bristol but on my way down my ankle started to swell up and was really painful it felt a bit like I’d gone over on it, anyway I made it to Bristol and asked the company I was delivering to for a first aider. He packed my ankle in ice I took some pain killers and headed home feeling a bit better, but on the way back I felt the pain again only worse. How I made it back is a mystery but I remember ringing my brother to pick me up to go straight to hospital.

I arrived at hospital that evening unable to walk. My ankle and leg were in that much pain I had to be wheel chaired in to A&E. I sat there wondering how a swollen ankle could give me so much pain. After a few hours wait and seeing a couple of doctors I was given antibiotics and told I probably had gout and sent home.

The next day was worse still and I started feeling ill, really sick and feverish and was always wanting a cold drink this lasted all day and when I went to bed that night I kept waking up due to bad dreams and that’s when I noticed my ankle and leg had really swelled and was red and had burst open. I got up woke up my girlfriend at the time and I went to hospital again.

Upon my arrival one doctor looked at me and then another and all I seem to remember was a lot of panic and I was told I was staying in. The doctors told me what was happening apparently but I don’t remember I just remember been put on a drip and put in a room on a ward on my own waiting for surgery that evening. After this I was in and out of it, it’s all very sketchy but I remember been really ill as the infection shut my body down. I’ve since learned that doctors told my family that the best case was I’d survive but loose my leg. As the days went on they were told to expect the worse, I might not see the weekend out.

I woke up one morning and tried pulling the wires out off me I remember looking at the tv on the ward it was Monday morning and all weekend was a blur. I’d had two operations to remove the infection from my leg and was feeling better. Doctors came round and said that my organs had started working again but to keep me drip fed on the penicillin. I was kept in all that week and was let home the following Monday for 3 days then went back in for skin grafts over my wound. I stayed in for another week then let home but this was just the start of a mega road to recovery.

All November and December were taken up with dressing clinics and plastic surgery appointments then on to physio as I still could not walk. I was doing well but was struggling to come to terms with what had happened. I was tired all the time, I could not go very far due to not walking and was really struggling mentally. My family supported me and helped me pay the bills as due to not working I had very little money coming in but my relationship with my girl friend was suffering, she could not support me and found me difficult to deal with and asked me to leave which I didn’t take well and I moved in with my parents.

That’s when I had to see a doctor as I was not coping I’d just cry for no reason I was a wreck and went to have psychiatric help. Then my company finished me due to been off for so long so I’d lost my job and my girlfriend through this illness and I just got worse. I tried to take my life but was thankfully unsuccessful as my family would have been devastated, but things were so bad I just hated every thing.

After months of counselling and physio I got better slowly and started working part time then got a full time job in October 2009 which was a big step for me. Then in November 2009 I met a lovely girl who I married this Christmas 2013 and my life is good again. This illness cost me a lot and I found out how much my family loved me and how much people I thought loved me didn’t, I’m left with the scars from my operations but I’m now living a good life again and I feel lucky to be here.

Mr & Mrs Danny Burnell

I know they say things happen for a reason and I couldn’t imagine my life without my wonderful wife, Kerry. She’s my soulmate and has been a major turning point in my life.

davidDavid’s story

All started on Wednesday 8th January 2003, My dad went to work as usual and managed to cut his finger, not a serious cut I might add, he cleaned it up and carried on his normal duties, going to the gym etc.

On Friday 10th January he started to feel unwell, thought it was just a cold which got worse over the weekend with him thinking he had got the Flu, he spent all Saturday in bed and managed to get up for a bit on Sunday morning, he looked frail, tired and very poorly, bad case of the Flu we all thought! That night everything changed, he knew something wasn’t right and decided he needed the hospital, he was pink in colour and was seen by triage, after waiting in the hospital to be seen he lost all skin colour and became short of breath, he got up and asked to be seen asap, he was taken into resuscitation and doctors wasn’t sure what was happening and with the infected area building up huge blood blisters, they thought it was cellulitis. We was told he needed surgery immediately and could be there for about 5 hours.

He was back from surgery within 2 hours, and was told they had never come across this infection in that hospital, the wound was left open and the infected areas marked off with markers to access the rate it was spreading, he was then being monitored on the critical care unit. On the Monday evening after the surgery we had it confirmed that it was Necrotising Fasciitis and he needed a full blood transfusion. He was placed on kidney dialysis and by the Tuesday evening was placed on life support and that was the last time we spoke to him. Slowly over the coming days he didn’t get any better and suffered a collapsed lung on Friday 17th Jan which they couldn’t re-inflate. We requested a priest to come and give him a blessing and say a prayer.

On Wed 22nd Jan was called into a family room by the consultants, they basically explained that its only the medication and machines keeping his body alive and wasn’t showing any signs of getting any better, we was asked to not give permission but understand this situation and the choice was made to discontinue medication. He had his family around him, was made comfortable and passed very quickly.

From a cut finger he lost a huge fight within 12 days, doctors looking after him did an amazing job, couldn’t have been better.

David William Norman died January 22nd 2003 aged 53 yrs

debbieDebbie’s story

I have now been successful in learning how to run again and for more information about amputee running and my journey, visit my website, http://www.amputee-running.com/.

I am 41 years old and married to Tony. We have two daughters aged 16 and 12. I have always been fit and healthy and for a couple of years, a runner. On my 41st birthday, in March of this year, I awoke with quite a nasty chesty cough. I also felt quite fatigued and generally unwell. We cancelled my birthday meal as I did not feel up to celebrating. I spent the weekend in bed and on Monday went to my surgery. The doctor I saw said I had a chest infection and advised paracetamol and ibuprofen. I did not make any improvement and two days later I began to experience a cramp-like pain in my right calf. It got progressively worse and nothing would ease it.

I went back to my surgery and saw the same doctor. She provisionally diagnosed DVT (Deep Vein Thrombosis) and advised me to go to the assessment ward at my local hospital. The pain was getting worse and worse and I just wanted it to stop. I had some blood taken and a doctor came to speak to me when I was shown to a bed. That was the last thing I remember until 12 days later.

Apparently, the day after my admission, still undiagnosed, I began to go into toxic shock as the toxins began to affect my major organs and my blood pressure dropped to zero. Doctors and other medical staff began to frantically try to get lines into my body and things looked very grim. I was taken down to theatre immediately and my leg cut open and it was then that the diagnosis was changed from DVT to NF. My leg was debrided of infected tissue and I was put in a morphine-induced coma on ICU. Small patches of black tissue on my fingers and trunk were a concern and doctors would only tell my family I had a small chance of survival.

In the early hours of the next morning, my family was contacted as I had started to deteriorate and I had needed resuscitation after going into cardiac arrest. It looked unlikely that I would survive the night. Fortunately, when they arrived I had started to improve slightly. Over the next 10 days I had many more trips to theatre for more debridement of the infected tissue on my leg, but all this time on kidney dialysis and on a ventilator. The smaller patches cleared up from the high dosage of antibiotics.

I was brought round, confused and unable to comprehend what I was told. My leg was so badly affected and in such a bad way that the doctors needed me to make the decision about what to do about it’s future. It was basically just bone between my knee and ankle.

I was told I could have reconstructive surgery which would involve numerous operations, with no guarantees at the end of it, and I would have to walk with a stick, or, amputation above the knee and be fitted with a prosthetic leg. Whilst I was considering my options, 4 days later, after more debridement, I took a turn for the worse again and the critical care team were rushed to my bed as I could not breathe and my heart rate doubled. It was very frightening. I spent the next 4 days in HDU on high doses of oxygen and antibiotics, which were a continuation from the diagnosis.

A decision needed to be made. I made it, and on Easter Sunday I signed the consent form to have my right leg amputated above the knee. The next morning I was wheeled to theatre for the final time to have the amputation carried out.

When I came round, a couple of hours later, although a bit groggy, I felt so much better than I had for ages. Tony, my husband, remarked on how much better I looked already. I knew then that I had made the right decision. I was able to go onto a side room on a main ward that evening and I remained in hospital for a further 3 weeks until my discharge. From the amputation onwards I made a quick recovery and throughout this summer I have had a leg made for me and have been learning to live with a prosthetic leg. It has not always been easy but challenging. I am back at work – 2 part-time jobs, and at my gym once a week. In the future I am hoping to have a running leg made and go back to running. I will probably require one more operation to tidy up the scars on my leg where it was amputated and skin grafts placed but that will be only minor surgery.

The important thing is, I survived!

dicDic’s story

My name’s Dic and I’m both lucky and glad to be alive.

I was admitted to Cardiff Hospital in January 1999 with severe flu-like symptoms. Fortunately, the surgeon was able to diagnose NF and he performed three operations in twelve hours to remove the rotting flesh. However, the bacteria were still very active, my body went into toxic shock and my vital organs began to close down. My family were advised to anticipate the worst.

Luckily, I was transported to Plymouth Hospital where Hyperbaric Oxygen Treatment saved my life. It’s a procedure used to treat divers with the ‘bends’ and, in my case, it slowed down the relentless advance of NF.

For some time my life hung in the balance but then I began to mend. I returned to Wales and underwent extensive plastic surgery on my torso at Swansea Hospital. Progress was hampered by contracting the ‘superbug’ MRSA and developing a thrombosis in my leg as a result of the blood-thickening effects of hyperbaric treatment.

I will always remember the joy of returning home albeit with a colostomy and in a wheelchair.

Subsequent medical examinations revealed the source of the NF – an anal fistula which caused an abscess which, in turn, developed into Fournier’s Gangrene, a virulent form of fasciitis.

Three abdominal surgeries removed the abscess, closed the fistula and reversed the colostomy. Further plastic surgery and reconstructive work have added to a total of about 15 operations in three years.

In between surgery I’ve returned to work as a teacher and learned to respect life more than ever. I try to squeeze the pips out of every single day and experience.

I’ve always enjoyed the best of relationships with my wife, Sandra, children, Dewi and Rhian, and daughter-in-law, Kelly who’s my third child. Having to watch is often harder than having to heal and now I cherish them like never before. Watching them thrive is my daily delight.

Others who’ve developed NF haven’t been so lucky and as a family we grieve for them:

Sometimes we live,
Sometimes we die,
Sometimes we cry.

Van Morrison

Dic

elaineElaine’s story

I fell in love with the most remarkable man in the world and we got married on the 5th June 2004. While on honeymoon I conceived our first child – we were thrilled and overjoyed. After a small complicated pregnancy our daughter Chloe was born by emergency c – section on the 14th April 2005. 2 days after the birth I was discharged from the hospital and within a few days I noticed what was diagnosed as a ‘bruised area’ appeared above my c-section wound.

A few more days passed and a Doctor called to see me. He prescribed antibiotics, which I took immediately, and that night I felt a popping sensation, puss and a foul smelling fluid leaked everywhere. My husband called in the midwife and I was re-admitted into hospital. Immediately on admission I was assessed, assessed and assessed and eventually transferred to high dependency unit. I was put on more antibiotics and fluids and given 24 hr care, but still we did not know what was going on.

I was then transferred to a normal ward only in a side room isolated from everyone. I got worse progressively day by day and it was decided that I needed a second opinion. A specialised Doctor from a nearby hospital came and he was shocked at what he had discovered.

I had the killer flesh eating bacteria Necrotising Fasciitis.

I was transferred immediately by ambulance to his operating theatre and within 30 minutes I was in the operating theatre. On coming round I found myself in intensive therapy unit lying beside many on ventilators etc; I watched as two patients died and as the families came and went as they grieved for their loved ones. I often thought when was my time?

On being assessed by the Doctor the following morning I found out that I had an open wound and was in shock. It was 18 inches long and the depth and the width was beyond belief. What was going on?

I was soon transferred back to the maternity hospital so my daughter Chloe could have daily access and contact, not that I was in a fit state to care or look after her. I often felt isolated and alone but when Chloe came to visit it brightened up my day, it gave me a reason to live on. I was again transferred to another nearby hospital to a specialist plastic surgery unit. I underwent three more operations to try and contain the infection from spreading. Chloe was given daily access and that was most important to me at this time. I became depressed and longed to be at home with my beautiful baby daughter. But that day seemed to be so far away.

Then the news came that I was going to be attached to a relatively new device called a vac machine, supplied by KCI. This machine took away all unnecessary body fluid and encouraged the wound to heal from the inside outwards. I was then given the exciting news that I could go home. I was so ill and frail to look after Chloe on my own and Marc used all his work leave possible, so I had to stay with my parents just to have Chloe around 24 hrs a day. It was great but life still remained challenging. District nurses came and went daily and I had regular hospital visits. The district nurses came at many different times each day and every day I had to be up and washed and dressed for 8am.

Often still at 2pm I was still waiting and this meant I spent most of my time indoors. Everyday my parents tried to talk to them to come to an agreement so I could try and function somewhat normally, but to no avail. This meant I was becoming more dependent at being indoors and very depressed. The days I could get out I was often to sore or tired to try or to depress.

Eventually 14 months later the wound finally healed. But that was not to be the end of my problems. My wound often cracks and I have to apply antibiotic cream. Without plastic or reconstructive surgery this will continue and I am too afraid to let the surgery take place, as I could not go through NF again.

In August 2006 I eventually moved back to my own property with my husband Marc. But life is still challenging due to the lack of services for mental health, I was not given any help or assistance. I try to keep focused and Chloe is my main focus, only I lost sight of that focus twice and made attempts to take my own life.

I know now that this is not the road I wanted to go down but it was a major cry for help, only no one wanted to help me.

I soon met this remarkable lady who inspired me to campaign for my rights to the services I required and 2 years later they are now in place.

IF I HAD NOT BEEN GIVEN THE SUPPORT OF MARC AND MY CLOSE FAMILY I DO NOT KNOW WHERE LIFE MIGHT HAVE TAKEN ME! I STILL SUFFER FROM DEPRESSION AND ANXIETY BUT WITH SUPPORT NETWORKS IN PLACE I CAN SEE MYSELF BEGINNING TO RECOVER ALTHOUGH IT IS A SLOW DRAWN OUT PROGRESS.THEY SAY BAD BEGINNINGS HAVE HAPPY ENDINGS, ONLY I AM STILL WAITING ON MY HAPPY ENDING TO COME.

Elaine from Glasgow

eliasElias’s story

It was the busiest weekend of my life – I was being filmed by the BBC on the Saturday. On the Sunday I was at the reopening of my local park where I had been chairing its restoration. On both days I had a slight pain in my groin area – it was hot and I didn’t think nothing of it as it wasn’t that painful. That evening Sunday 22nd May 2011 I got home and noticed I had got a swelling which was growing at an alarming rate. I rang a friend who advised me to ring the out of hours surgery. The Doctor came round to my house and I was told to get to A&E as soon as possible. I remembering asking if I could just have some antibiotics but he was firm that I needed to get to hospital as soon as I possibly can. In retrospect if I had not obeyed his instructions I would have been dead by now.

When I got to A & E I was diagnosed with NF – apparently the Hospital I was at (Wexham Park Hospital in Slough) were familiar with the disease. This is all I can remember until I woke up in the intensive care unit surrounded by all sorts of machinery. I later found out that I almost died in ITU. I was kept in the unit for 8 days and was monitored night and day and was put on large amounts of morphine and had my own little button to press when I felt the pain. I was also on a strong course of antibiotics. The worse experience in the ITU was having to drink liquid potassium ! at least in the Unit you could get somewhat decent food when I finally was able – this was not the case once I was admitted to a ward!.

During the time I cannot remember I had an op which got rid of the dead skin and infection as best it could and I was fitted with a VAC and a catheter. I had to have 2 further ops to get rid of more infected tissue.

After about 5 days I was visited by the Physio team who made me get out of bed – I couldn’t even stand not alone walk and the first couple of times they had to use a hoist to get me to a standing position – my head was a swirling mess and I felt terribly giddy. On day eight I transferred to a ward and physios continued to demand not only that I be hoisted but to walk with a zimmer frame. Slowly but surely I did it.

The wound dressing was changed every other day and since I had a great pain pressure I was given entinox (gas and air) so the pain was not so painful but it made me as high as a kite and the nurses thought it amusing. This was the routine for next five weeks and slowly but surely the sluff around the wound started get less and eventually the Vac was removed and I was ready for skin grafts. The graft was taken from my opposite leg and was wrapped in many bandages and was told it could not be touched for a couple of weeks. I eventually came off the antibiotics and started to feel a lot brighter in myself.

During week six I was allowed home and I still couldn’t walk very well without the aid of a zimmer frame and I had carers come in 3 times a week and a district nurse every day. Within 3 weeks I was walking and all the carers had gone all I had was the district nurse who came to do my dressing every day. At this time I also decided to come off the morphine – that was a nightmare – though I decreased the dose over a few days I had sweats, twitching muscles and problems urinating – all side effects of going ‘cold turkey’

It’s now 6 weeks after leaving hospital and the nurse declared the wound and closed and there was only a small area to heal – so hopefully I can now start to get my life back to normal.

Elias Kupfermann

Due to the sometimes, unpleasant nature of Necrotising Fasciitis, we have given you the choice as to whether you would like to see the personal pictures that Elias has kindly shared with us. Please be warned, they are very graphic. View Elias’ pictures.

emmaEmma’s story

My story begins with me and my husband finding out we were pregnant a week before our 2nd wedding anniversary, we were shocked but overjoyed to learn that we were 5 weeks pregnant, however just a week later 2 days after our anniversary I awoke with pains and bleeding, I was taken to the walk in centre by my sister around 5pm and they said it may just be pains or the start of a miscarriage and there was nothing they could do so I was sent home.

My husband arrived home from work around that evening took one look at me and took me to the A&E department, I arrived at around 10pm and I was there until 2am in the morning, they refused me a scan during this time even though myself and my husband insisted on one and instead just took blood tests and I was sent home with painkillers and was told it was implantation bleeding and it would settle down, they also argued how far gone I was into my pregnancy which was confirmed the next day that I was indeed correct as my HCG levels were too high for me to be only a week gone. I was then called by a concerned sonographer from maternity ward at 8-30am the next morning after they read my notes from the early hours of me being in A&E. When I told them I was in more pain and that the paracetamol and codeine had not even touched the pain they told me to come straight in which I did.

After then scanning me finally it was confirmed that it was indeed an ectopic pregnancy and was told that they would need to perform emergency surgery in order to remove the mass as it was quite large. I was then taken down to theatre after they explained that they would try to do key hole surgery but in some cases it may result in a full laparotomy if the key hole was unsuccessful. After waking up from the surgery I was told by the surgical team that my ectopic pregnancy had actually ruptured which can be fatal and I had been bleeding internally for a while so I had needed a full laparotomy and lost a fallopian tube during the surgery process. I was then released from hospital two days later and came home only to be in really bad pain and the painkillers again were doing nothing for me, my stomach had started to weep and there was a purple bruise that was getting bigger on my stomach so my husband took me to the walk in centre where I was seen by a Dr only to be told it was a mild infection and gave me antibiotics.

On the Thursday evening the following day around 11-30pm my wound suddenly started oozing brown liquid and the smell was horrific, I also had the black lump on my stomach which had been there when they had released me which we questioned and was told it was perfectly normal bruising. My husband called 999 and I was taken by ambulance back to hospital around midnight as my blood pressure was very low and I was losing consciousness, there was also a red line on my stomach which they marked off with a pen that had started to rise quite rapidly and I was in terrible pain, they cleaned me up but it was still oozing and I was then put onto a ward with three other women around 5am and told to get some sleep and a consultant would see me sometime in the morning.

Around 8:30am that morning a consultant came and took one look at the wound (the purple bruise was now protruding from my stomach and was green) and confirmed they needed to start me on antibiotics for Septicemia there was then numerous blood tests taken from me and 45 minutes later I was then taken to a side ward and was told by the consultant I was being transferred to Addenbrookes hospital and the ambulance was on it’s way. I was really scared at this point as I did not know what was really happening to me. I arrived at Addenbrookes forty minutes later and was taken straight to the resuscitation area where more blood was taken and also I was given a CT scan to check my organs weren’t failing.

My temperature had hit nearly 40 and there was a lot of Dr’s and nurses in and out asking questions. I was then told that there was a chance that it could be Necrotising fasciitis (a rare flesh eating bug) and was also told it can be life threatening and I needed surgery straight away. I was then taken down to theatre and was in surgery for around 6 hours. During this time my family were told by the surgeons that they were treating me for Necrotising fasciitis and were doing all they could but I was a very sick. I came round from the surgery and woke up in intensive care where I was monitored by staff through the night closely. I was told they had to remove skin and tissue from my stomach the size of 22cm by 15cm because the infection spreads so quickly and kills the tissue and the only way to stop it is to cut it out. Because further operations were needed, the wound was left open with a vacuum seal on it to prevent further infection.

I was very lucky and it was caught just in time another 6 hours and I was told I wouldn’t be here today. I was given a blood transfusion before they could do another operation as I had lost a lot of blood during the first op. Three days after the first op I was then opened up again so they could remove more dead tissue that the infection had killed. Four days after this I was put under again for one final check and for the surgeons to close me up. I spent a total of 14 days in hospital and I cannot thank them enough as they saved my life and I am very thankful to be here today because of them.

I am now making a good recovery but the emotional side will never leave me or my husband and we continue to grieve for the loss of what would have been our first child.

jamesvigarJames’ story

My name is James, I’m 42 years old and live in Highbury, North London. Just a few months ago my life was severely threatened by NF and the subsequent onset of septicemia. However I don’t want you to suffer through my story, anxious of the outcome so let me tell you the good news right away: I have recovered fantastically well with few mental scars and even fewer physical ones.

My illness began with a small wound – maybe an insect bite? – on my elbow that appeared to get better before getting worse. But it seemed to be nothing more than a local infection and, being fit and healthy I assumed it would soon go. On Friday 14th January 2008, despite growing pain in my arm I was fit enough to change a wheel on my car. However that night I began to feel feverish. With the benefit of hindsight I realise this was the bacteria taking a severe hold in my arm but at the time I merely cursed my luck at catching flu on top of my sore elbow!

The next morning I woke up feeling faint and collapsed, banging my head in the process. This forced my fiancée to call an ambulance instead of driving me herself which probably saved my life. We know now that my blood pressure had dropped to a critical low and my major organs were starting to shut down.

At the hospital, I was, apparently, entirely lucid and coherent although I have no recollection at all. This created considerable confusion among the doctors as all the test results suggested I should be something quite different; unconscious, perhaps, or dead. The decision was taken to send me for emergency surgery on my arm to both identify and treat the infection.

I can remember vaguely going into theatre for surgery. I assumed, as had happened in the past with various orthopaedic surgeries, I’d wake up later with perhaps a sore arm, have to endure hospital food for a few days and then be home. As it turned out – and at this stage in the story I have to rely on my fiancee’s recollection – a brilliant surgeon (Ms Pardeau – thank you!) took the risk to remove a substantial amount of tissue but to try and save my arm from amputation. Although it wasn’t ever said in such terms, reading between the lines it seems the view was that there was a very high chance I would die anyway from the septicaemia, arm or no arm so they may as well try and save it in case I defeated the odds. My family were told that I was critical and that the following two days would determine whether I survived.

I was kept in an induced coma and on life-support for seven days. I can recall coming out of sedation briefly and being utterly distraught at the ventilator tube in my mouth. I had no recollection at all of events that had led me to his state and was very confused. What had I done to deserve that? Was I being punished? Take it out! Now!! I was promptly put back to sleep for my own good. Of course while I was enraged and terrified in equal measure, my family were jumping for joy (although they had the good grace not to do it in front of me).

A day or so later I was woken again and a consultant tried to explain what had happened to me in words of less than one syllable and warned me I was still very ill. I felt strangely calm about it all but decided in my mind to defy the professionals’ prognosis and set about getting well enough to leave ICU. My partner was by my side, pictures my two young children had drawn for daddy were taped to the foot of my bed and my family were camped in the hospital. Their role was fundamental to my survival. All the time I could see or hear one of them I felt anchored in the living world and much less vulnerable. My emotions were, at times, quite out of control due to a combination of my situation and the vast amounts of drugs flowing round my system. Lisa, my partner, took all I could throw at her and never flinched. Her love and compassion were incredibly motivating too although I was occasionally guilty of over-stepping. She told me how I frightened her almost to death one night when, after a healthy cocktail of morphine and ketamine, I stopped breathing for several seconds. Just as she was about raise the alarm I blew out a lung-full of air. I’d been practising the breathing exercises given to me by the consultant even while high as a hallucinating kite. I had my backside metaphorically spanked for that stunt but it was representative of my determination to get better, I suppose.

Eight days after being admitted in critical condition I was well enough to be moved to a general surgical ward and await a bed in a specialist plastic surgery unit at another hospital. How I succeeded in recovering without loss of organ function and with all my limbs in place is, bearing in mind how close to death I trod, little short of miraculous. The treatment I received in the ICU at Homerton hospital was unbelievable. Not just in terms of the clinical expertise and professionalism but also the compassion and humanity that the staff showed to me and my family. I won’t ever forget them.

I have a big chunk of my left arm missing but the skin graft is progressing fantastically well. Two of my fingers are numb due to nerve damage but in time they may improve. And frankly, who cares? It would seem such a small price to pay compared to what could have been. I’m blessed, I know that and I intend to make the most of those blessings.

I hope I don’t leave anyone with the impression that I have trivialised my illness in any way, or that I am suffering from post-traumatic stress. I’m reasonably confident neither of those things are true. It was horrible. I often wish it hadn’t happened to me. I often have moments when I feel quite sad and emotional for no particular reason. I recall moments in hospital – the really dark moments when my optimism would be pierced by a very real fear for my life or when the pain from my arm was so great, despite morphine, that it caused me to pass out. But despite all this, for the great majority of the time I realise exactly how incredibly fortunate I have been. I have a wonderful family and incredible friends. My local community has provided the kind of support and kindness one imagines only exists in works of fiction.

I hope other sufferers and their relatives who read this can take heart from my recovery and feel able to look to the future with a degree of optimism. I wish you all the best in your recovery and pray that you can find a path back to a happy and pain-free life as quickly as possible.

James Vigar 7/7/2008

jennJen’s story

My name is Jennifer I was 47 years old when I contracted NF. I really have no idea how I got the bacteria in my leg. I was in good health no red flags.

I was walking through a city park with my son. I remember I did not have socks on as I sat by the side of the creek worrying about snakes. It was Nov 09 and 72 degrees outside. Beautiful warm day. My pants where wet from the creek and I had scratches on my ankle from the tall grass. When we left and I had a bad feeling. But proceeded to the store, my wet pants dragging on the floor.

The next day I took a shower and felt this horrific sting/bite on my ankle. SPIDER BITE? Man, that feels really different. I thought I needed to look at that as the day went on I forgot about it, till I started having a high fever that evening. I did not think about the stinging and felt it was not connected.

I lay in bed for 3 days really not feeling well. My leg began to hurt so bad that I finally went to the doctor. I felt nauseous and could barely walk on my leg. I was agitated and knew something was wrong. The doctor didn’t think it was a spider bite, that I had no fever. While I was telling the doctor to look at my leg (something is not right here) its bright red/purplish and she diagnosed cellulites. She had told me what I wanted to hear, that I would be ok. I went home took the prescribed antibiotics and prayed….

The 4th morning I got up and fell out of bed. My ankle had turned BLACK. I thought of gangrene. I started screaming for my husband.

By the time I got to E.R my kidneys had failed, infection had spread through my blood stream (septic). I was hurried to the ICU. The last memory I have is of a doctor writing on my left leg.

“The only way to know if it is NF is to cut her leg and find out, if not she will have a small incision, but we have to operate” the surgeon told my husband.

The first surgery was supposed to last for 1 1/2 hours. It lasted 4. YES, it was confirmed I had Necrotizing Fasciitis. Strep A. I was in a coma. My foot and ankle was debrided.

The next day, all of my levels had tanked. My upper calf was hot and so was my upper thigh. They told my husband my chances were less than 30% (of survival) they might have to amputate the leg. ” I would call in her family now, this is not good she is not responding and she should be. ” I was floating in my coma totally unaware I was in grave danger.

They took the rest of the infected skin/tissue anything that had been affected. They also made 5 deep incisions in my upper thigh, for a wound vac. They wanted to be sure the infection was not still travelling, however, out of the 5 wounds brownish/blackish goo was being sucked from my body.I was in a coma for 13 days. I awoke, not knowing I was now at another hospital that would either amputate the leg or try to cover this large wound with skin grafts. They finally found a plastic surgeon that thought she could cover the top of my foot, up to my knee all around my leg with skin grafts, taken from my upper thighs.

I spent 32 days in the hospital. I had a wound vac, which protected the leg. Which was placed back on even after I had the grafts. I was in the twilight zone, too afraid I was going to die and too afraid to ask what kind of infection I had.

I left the hospital (unwilling) with over 100 staples and stitches in my leg. I could walk 3 steps on my walker. I was weak and scared. I wanted to stay in the cocoon the hospital provided me. But they worried about my chances of getting another infection. OK, now I’m ready to leave!

After horrific bandage changes, a foot that wouldn’t go all the way down. I realized the journey now was to me almost harder than it had been in the hospital. It took me over a year to walk without a wheelchair/walker/crutches/casts/braces and cane. I still have a limp in my leg. But it is a small price to pay.

It is now 2 years later. My left leg (slim) is disfigured horribly. I look like I have been bitten by a shark I have nerve damage which causes me alot of pain, balance issues and even self image issues. It has taken me a long time to look at Slim, like a trophy, a testament to all that I have been through.

The fact that I am still here with my leg is nothing short of a miracle I know it. and I love that I am looking at my own toes. I almost lost them.

I will always wonder where this NF came from. How could the doctor not know? Why wasn’t I admitted to the hospital? If I had waited, even a few more hours I would not be here.

I am humbled and grateful. I do not focus on the why me? I focus on this is bigger than me, now what are you going to do about it?

I am now a germaphobic and NF has robbed me of my innocence. I have a 9 year old and am forever worried about germs. I scream inside mostly, otherwise I wouldn’t leave the house.

I now try to look forward. Without trying to scare people of a “flesh-eating bacteria” I explain to them my story. I want this to be on their radar screen as it wasn’t on my doctor or mine. I would have asked about it IF I HAD KNOWN. I read everything, how could this NF be out there and I wasn’t aware of it? I have several friends that say because of my story, they have asked about MRSA or NF and in two cases it made a huge difference.

As I write this, I just got done walking on the treadmill for 50 minutes. My skin graft is tight, my leg hidden by my pants. It is only a matter of time that I will walk down the beach with my funky looking leg, begging and hoping people will ask what happened.

I want to tell the world about NF. How that spot on your body that is bugging you can be more than you thought. CHECK it out. Don’t wait, and ask the questions… I wish I would of insisted on another doctors opinion or a simple blood test could of showed my elevated white blood cells count. Who would of thought that I could have a RARE infection? Is it really that RARE? Education of NF to the medical community as well as us civilians is the key.

I’m not giving up till I give out.

Jennifer from the USA

johnJohn’s story

This is John’s diary of events

Thursday 19th December 1996

Felt ill on Thursday evening, just like mild flu symptoms. I had two painkillers and went to bed.

Friday 20th December

I felt not too bad all day; I just kept taking painkillers. In the evening I felt a bit of discomfort sitting on the couch while watching TV. The pain was in the right side of my buttocks.

Saturday 21st December

I woke up in a bit of pain, again in my right buttock and as the day went on the pain got worse. I stayed in bed all day and by 11pm the pain was so bad we phoned the emergency doctor. The doctor arrived about 1:30am on Sunday 22nd and said I had a skin infection. He gave me antibiotics and a few painkillers to take at that point and left a prescription.

Sunday 22nd December

First thing in the morning we took the prescription to the chemist who could not read the writing. As our Health Centre is open 24 hours we took the prescription there and showed it to the doctor on duty. He looked at it, guessed and said, “I think that’s what it says” and gave us another prescription which we took back to the chemist which they made up immediately.

Throughout Sunday my condition worsened and come late afternoon we called our Health Centre for another visit from the Doctor. We were asked to go to the Health Centre as no Doctor was available for house calls at that time. I was taken by my family to the Health Centre where I was examined.

Again, I was told that I had a skin infection and this time also an abscess. I must make it clear at this point that my buttocks and my scrotum were both extremely swollen to about the size of tennis balls.

As the evening went on my condition deteriorated drastically, I was drifting in and out of consciousness and my scrotum and buttocks were becoming very swollen. My wife and family were becoming very concerned. Around 9:45pm my daughter phoned the Health Centre, the female who answered the phone was given the whole background, she advised us that no house call could be available for a couple of hours.

My daughter then asked to speak to the Doctor. It was explained to him that my scrotum was swollen the size of tennis balls and my daughters words were “My father is in excruciating pain and deteriorating in front of me”. He said that she was exaggerating so my daughter asked “Can you not at least come out and see?”

Reluctantly the Doctor then told her it would be at least two hours before he could get to me. In frustration she put the phone down and my wife phoned the A&E at our nearest Hospital. She was told to phone for an ambulance straight away. The ambulance arrived within minutes.

The paramedic looked at my scrotum and said I should be taken to Hospital straight away. I arrived at 10:30pm and was taken to a room at 11:25pm. I was seen by a Doctor at about 2am Monday 23rd.

Monday 23rd December

The Doctor examined me and advised myself, my wife and my eldest son that I was very ill and would have to be operated on. I signed the consent form and was then told by a different doctor that I had Fournier’s Gangrene, the dead skin needed to be removed and that I might lose my testicles.

The surgical senior house officer was then sent for, he diagnosed Necrotising Fasciitis. They gave me some medicine to drink and sent me for an x-ray. I was in and out of consciousness at this point so I do not really recall very much at this point so I relied on my sons records which he kept during my time in Casualty and the ICU.

I was only operated on at 9am, because the Doctors were concerned about when I had last had a drink. My last drink was approx 8pm on the 22nd Dec and I had not eaten since 19th Dec. After the operation I was transferred to the ICU. At 1pm my wife and family was called to the Hospital.

A nurse took my wife and family to see a Doctor at 2:30pm. He advised them that I was very ill and had Necrotising Fasciitis and explained that it was a flesh eating bug. He also explained that on Tuesday afternoon they could see a Mr Chaubey, who had previous knowledge of this illness.

Tuesday 24th December

About 1:30 – 2am my family were asked to sign a consent form for yet another operation, my wife was to exhausted so therefore my two eldest sons went up. They signed the form and went home.

7pm the Hospital phoned again they had forgotten to have a consent form signed for a colostomy bag to be fitted so my wife gave her consent. During my family’s visits to see me, the staff in the ICU explained that the Doctors had to remove more flesh that morning. This took place in ICU – the reason for this I do not know.

During my stay in Hospital I was infected with M.R.S.A.

John

katherinejacobsKaty’s story

Hi,

My name is Katy Yates and 8 weeks ago I developed NF as a result of an emergency C Section. I gave birth to my little girl 7 weeks early and little did I know I would spend the first few weeks of her life trying to recover from this horrible disease.

The infection should have been caught a lot sooner and my midwifes ignored my complaints of an infection, the infection which turned into NF and resulted in 3 surgeries, and left me with a 45cm wide x 7 cm deep wound in my tummy. I was in hospital for 3 weeks, and got pumped full of antibiotics and thank goodness it is now gone. I have been fitted with a vac which is doing an amazing job, the wound is getting smaller and smaller but still leaves me struggling with day to day life and looking after my daughter Phoebe. I have to have someone with me most of the time as movement is painful but I am getting there very slowly.

I came across your charity whilst researching NF, and from reading your information, you are all doing the most amazing job. I really want to help and get involved with raising awareness of this horrible disease. I have started my own facebook group to raise awareness, as like most of the people in the group no one had heard of NF. I want to hold fundraising events to help you continue the fantastic work you do trying to educate the medical professionals to diagnose it quickly to save lives.

I wanted to introduce myself, I have a couple of people interested in magazine articles and I am happy to share my experience with anyone, I want to help so no one has to go through what I have been through, I know I have been lucky and I am still here and my injuries are minimal compared to many, but given that I am lucky I feel I need to do something to help others.

Please can you let me know how I go about donating and fundraising for you.

Congratulations on all the work you have done.

Look forward to hearing from you.

Kindest Regards,

Katy Yates

Age 29

kevinKevin’s story

Kevin’s Story as told by his mum Ethel.

It was August 1998, only a week to go before my retirement after working 29 years as a Nursing Auxiliary.

My son Kevin (41) had been ill in hospital for a few days with fluid on his lungs and had a drainage tube fitted. At 1 o’clock I received a call to say that he was being sent to another hospital for a small skin biopsy and he would be back late evening or kept in overnight. They were not unduly concerned.

In my own mind I queried why if it were only minor why another hospital when we had a very good up to date laboratory. So I paid them a visit and was given the same information as over the phone. Kevin had already gone to Heartland’s in Birmingham so I decided to follow.

When I got there and found the ward that Kevin was on, the doctors had already admitted him and were doing tests. After 1½ hours I was allowed in to see the doctor, he told me that Kevin needed a life saving operation – without it he would die, and even with it he could still die.

He showed me Kevin’s back and said that all the discoloured skin had to be removed. This to me seemed to be from his neck to as far as I could see down to his hip level, it was all red and purple.

The operation was done during the night and Kevin was placed in Special Care on a life support machine. During the morning I was allowed to go and see him. I was not prepared for what I saw even though I had worked in hospital for 29 years and had worked on the maternity wards, I had not even seen a Special Care Unit!

I could not recognise my own son he was swollen up everywhere like a michelin man with tubes all over the place. I counted 14 drips of blood, liquids etc; all positioned in his arms, neck and almost anywhere they could get them in.

Later I saw the consultants and surgeons they were kind but very straight – they did not hold out much hope for Kevin, there were two good things in his favour. He was reasonably young, the second being that he was in good health. They had removed 40% of skin from his torso. I thought this would be a fine layer like for skin grafts – but I found out later it was also tissue mainly down to the bone.

They said that they had not come across a case like this before so they decided to treat him as a burn victim. The dressings were changed every other day, taking away any more dead skin. I visited morning and evening. My family worked out a rota to provide transport, brothers, sisters, nephews, nieces all came in turn to say goodbye, thinking this was the last time they would see Kevin.

But Kevin very slowly started to improve and slowly the drips and tubes were taken out, he then started to become more aware of his surroundings. With a tube in his throat he was finding it difficult to talk but he did try to write notes. One night he gave me an empty tissue box and he had written a little note on it saying “Mom lend me a fiver” – I knew I had got my Kevin back, he was not going to leave us.

He was placed in a side ward eventually, his treatment began of six skin grafts. He had mood swings, some days he was a model patient joking with the nurses. On one occasion he made a big matchstick model for the nurses, then the next minute he was hallucinating with the morphine, he would swear he had seen all kinds of things, then he was demanding his clothes wanting to sign himself out.

After much persisting he was allowed home, although he still had a large gaping wound and arrangements for the district nurse to visit at home was then arranged.

IT HAD BEEN THE WORST 11½ WEEKS IN OUR LIVES.

During all this time I was never given a name for what Kevin had had, just a bad infection and that the pus on his lungs had entered the layers of skin!!!!

Early in the New Year 1999 my 15year old grand daughter said to me “Gran, I have been reading the Guinness Book of Records you bought me for Christmas and I think I have found out what Uncle Kevin had or something very similar, it was Necrotising Fasciitis”. She used the school computer and found a support group in the United States.

Later we heard of Doreen’s support group we contacted her and we keep in touch by having a chat and receiving newsletters every quarter. We know we are not alone – others have also suffered and even lost loved ones.

My son suffered a lot of pain and is scarred badly, we don’t know the long term effects but at least with excellent nursing and lots of prayers he is still with us. Thanks to God.

My best to you all.

Ethel

Kevin D’s story

Late in February of 2006, I got an ingrown hair on my bottom. Other than making sitting a bit uncomfortable, I didn’t think too much about it.

About a week later, I started to have flu-like symptoms. “Great”, I thought, ” I’ve got a sore bottom AND the flu, just my luck!”. By Thursday the 2nd of March, I was starting to feel pretty miserable. I went in to work that day, but was sent home at lunchtime by my manager. I went home, crawled into bed and slept. The next day, I wasn’t feeling any better, so I decided to go and see the doctor. I was nearing the end of a major project at work and hoped the doctor could give me something to ease my symptoms. I told her all about my nasty flu symptoms, but didn’t even bother mentioning my sore butt. Of course, she told me there was really nothing that could be done for me, and sent me home. I thought, “Oh well, it’s Friday, I’ll spend the weekend in bed and I’ll be better by Monday morning.

Saturday morning, I woke up and actually did feel a little better. I drove down to Portsmouth with my eldest boy, who was five at the time, to pick up some parts for the Vespa scooter I was rebuilding. By the time I got back I felt awful and crawled back into bed.

I spent Sunday morning in bed, finally appearing at around 3:00 in the afternoon to try a bit of lukewarm tomato soup that my wife had made me. It tasted awful and came straight back up. In fact, that afternoon, anything I ingested just came back up. I was drinking lots of water, because I was incredibly thirsty and also because I wanted something in my stomach to ease the dry heaving. I crawled into bed again later that afternoon and stayed there until about 9:00 in the evening. I got up because I just couldn’t handle the fever any more; my wife, Jennie, took my temperature and it was 40C. She rang the on-call doctor at the hospital to come and see me because we didn’t want to bother the neighbours to mind our kids while we went to the A & E.

When the doctor arrived, he examined the abscess on my bottom and called for an ambulance to transport me to the hospital because my wife didn’t drive at the time. Since it was a transport call and not an emergency call, the ambulance took about two and a half hours to arrive. Whilst waiting for the ambulance, I became more and more ill. I was delirious and vomiting, and believed that I had terrible diarrhea. The diarrhea, as it turns out, was blood and rotting flesh rushing out of the site of my infection. In any event, my wife made arrangements for our boys, the ambulance finally arrived and she and I were taken to Frimley Park hospital in Surrey. I vaguely remember the ride in the ambulance, knowing something was very wrong with me, and feeling that I would be all right if we could get to the hospital.

I don’t remember much about what happened that night, or for the next two and a half weeks for that matter. Apparently, I sent Jennie home at about 4:00AM so that she would be home when the boys woke up, telling her I would be fine. I was moved to the assessment ward, and then to the high dependancy unit a couple hours later.

At about 9:00AM on the 5th of March, Jennie received a call from the hospital to tell her that I was going in for emergency surgery to debride the site of infection. During the surgery, my heart stopped, my blood pressure dropped to nil and I went into toxic shock and suffered multiple organ failure.

After the initial surgery, I spent 16 days on full life support, completely sedated and unaware of anything that was going on. I had two further surgeries, cutting away more dead and infected tissue. The prognosis was not good at all, Jennie was told that I had about a 10% chance of survival. The staff at the hospital told my mum, who lives in Canada, that she should come as quickly as she could because I was not likely to make it.

I developed a serious lung infection, which filled my lungs with fluid. I’m told that the physiotherapists spent hours upon hours, pounding on my chest and back to clear my lungs. I’m also told that every time it seemed that I was improving, another thing would set me back and put me in danger again. Jennie, my mum and my stepfather took shifts with me in the ITU, and through their care and the amazing work done by the doctors, nurses and physiotherapists at the hospital, I began to improve.

The first thing that I remember after being admitted to A & E was Jennie telling me that I was in the hospital and that I was very ill and not to try to talk because I had a ventilator tube down my throat. I thought it was the same night as I had been admitted; I had no idea about what had gone in in the previous two and a half weeks. They told me that they were going to take the ventilator tube out. I didn’t know that they were doing that because they intended to give me a tracheostemy. In any event, the tube came out and I actually started breathing on my own – no tracheostemy.

The next few days were a bizarre and terrifying mixture of hallucinations and delirium, interspersed with brief periods of lucidity. I’m grateful to all of the nurses who patiently soothed me during my insane moments, and who assured my wife and mum that I would eventually come back. After all of the sedation, medication and trauma my body and mind had suffered, it was natural for me to be completely off my head. I had tubes and wires coming and going everywhere and was hooked up to more machines that I could count.

During the time that I was sedated, my muscles wasted quite significantly. That, in addition to the fragile state of my organs, meant that I couldn’t lift my arms, or legs, or really move at all. Four days after coming off the ventilator, the nurses and physiotherapists hoisted me to a chair. Fifteen minutes of sitting left me absolutely exhausted. Eventually, the tubes started to come out, at the rate of about one a day. A few days later I was managing a dozen or so shuffling steps across the room, with a walking frame to lean on, a physiotherapist on one arm and Jennie on the other.

In the ITU, I pined for my sons, who were five and nearly three at the time. Children aren’t allowed in there, so I had to settle for a picture and few bedtime phone calls with a nurse holding the handset to my ear. I counted the minutes every day when my mum and my beautiful Jennie would come and visit.

Things got better, I got stronger every day and on the 30th of March I was moved from intensive care to a regular ward. Things went very well, I got stronger at an amazing rate and I was able to have visits from my boys. I gained an appreciation of the things we all take for granted. I was frustrated very often because I couldn’t walk, or feed myself, or wash without assistance. But, gradually, all of those things came back. After two weeks on the ward, I was discharged from the hospital. Home in time to see my boys hunt for Easter eggs in the garden!

I spent a couple of months convalescing at home and then went back to work part time. After about a month of that, I started back at work full-time. It’s now October, six months after I fell ill, and I’m still recovering. Most days I feel good, but I still tire easily and am still absorbing everything that happened. NF took a fair-sized bite out of my bottom, but I am getting better though, and I know that I will make a full recovery.

Before I finish, I’d like to say my thanks to a few people:

All of the doctors, nurses, physiotherapists and staff at Frimley Park hospital in Surrey. The NHS takes a lot of stick, but they were amazing, and I owe them my life for diagnosing and treating me quickly and correctly. And I owe them my gratitude for caring for me compassionately and patiently.

My mum, for coming to our aid and helping out with the kids and for helping me recover at home.

My family and friends, for all their encouragement and hope. Even the ones who now take the mickey about my “half-assed” comments.

My handsome boys, Eric and Alec, whose picture next to the bed gave me a reason to get out of the hospital.

My employer and all my co-workers, who have given me and my family more support than we could have asked for.

And mostly, my wonderful wife Jennie, without whose love and support I don’t think I would have made it. I can’t imagine how hard this was for her. I love you honey.

Kevin Donnelly

Kirby’s story

Hello, I would like to tell my story.

I was 17 with a 9 month old little girl, I had been planning a christening for months, trying to make it perfect for my little girl. Me, my family and friends had planned everything for the 8th June 2014.

I had become really poorly the 1st June as if I had come down with flu, I couldn’t physically stay awake, I had to have family to look after my daughter whilst I tried to recover for the big day! But I was getting worse so I dragged myself to the doctors and he put it down to the flu, told me to just take paracetamol.

But I didn’t feel any better. I woke up Saturday 7th in agony with my left calf, I couldn’t walk. Noticed a bite like mark on the inner of my right thigh which was sensitive. I was in and out of sleep shivering but sweating. I refused to go to hospital during the day because I wanted the special day for my little girl to still go ahead. As midnight approached I was crying. I felt like I was dying. Which little did I know, I was!! My mum took me straight to A&E and I was dosed up with morphine, too much morphine! More than I should have had. I was in reasus not knowing what was going on, as soon as the surgeon could get there I was rushed into surgery for them to realise I had compartment syndrome in my left calf and nf in my thigh! I had a cardiac arrest in surgery and when I finally came out, I was told how lucky I was not to lose my legs or even die! It was really touch and go. I had to spend a few days in intensive care till I was put onto a ward. I missed my little one so much but I knew I had to get better. I underwent 3 operations in total in 3 weeks, a skin graft and a drain fitted.

Its been just over a year since it all happened and I still have panic attacks when I step into a hospital but im so thankful im still here, I still have both my legs and I get to see my little one grow up. Im sharing my story with you for hope for anyone who has had it and didnt think they could feel ‘normal’ again, I do have my down days but I remember I was lucky.

Kirby

Leslie’s story

My name is Lesley and I live with my husband Ian and my young son, Xander in Northamptonshire. In June 2012, following 2 years of unsuccessfully living with Colitis (following the birth of our son), I underwent surgery to have a stoma fitted. At 36 years old, this was the last thing I wanted but I’d run out of feasible options. If a stoma was all I had had to contend with last year, life today would be a lot easier…

On Sat 23rd June, I was feeling very weak and decided to take my consultant’s advice to admit myself to A&E to undergo a subtotal colectomy. I had been hoping to have this done as a ‘planned’ operation but felt too tired and ill to wait any longer. The doctors made 12 attempts to take blood and cannulate me (all unsuccessfully) so it was decided that I would have a central line fitted on Sun 24th and have the operation on Monday 25th. The central line was fitted with me in excruciating agony – this is an adjective I could use daily for the next 8 months of my life! On Monday, I met with a stoma nurse to have the optimum site for surgery decided on and was prepped for surgery. I opted for an epidural as they explained that the pain relief would last longer and the surgery went well. Afterwards however, I awoke screaming in agony as the pain relief had not reached my abdomen and eventually they tipped my bed backwards until I felt no pain.

On the ward, I was made to stand 48hrs later (Wed) and when I couldn’t, they told me I had “lost confidence”. I asked them how could I have lost confidence when I had been walking only 2 days previously? In the end, they got me out of bed with a roter-stand. By Thursday I was complaining of a burning pain in my left leg and had spotted a blister, which was dismissed as a mark from my catheter. This continued until Saturday when my husband received a phone call urging him to come to the hospital immediately as they thought that I wouldn’t last the night. 5 days after the operation my blood pressure had dropped to dangerous levels and they needed to stabilise me. To cut a long story short, they gave me plenty of antibiotics; all kinds as they didn’t know what they were dealing with and I felt a little better. I was sent back down to a normal ward on the Monday, 1 week after my operation.

For a further 2 weeks, my blood pressure never got back up to normal, the physios had to hoist me out of bed and I refused to be moved much of the time because it hurt so much with just two members of staff but they never had the capacity to use 4 nurses. My surgeon had diagnosed cellulitis and in my naivety, I accepted this and was relatively unconcerned. After all, how could I know what was ‘normal’ feeling following abdominal surgery and by now the redness and swelling in my leg was being monitored and treated with antibiotics. However, if you’re reading this, you know that antibiotics don’t help you if it’s actually NF you’re dealing with and 21 days after my initial operation, I again ended up in ITU fighting for my life. I have little memory of this period and I can only imagine the nightmare my husband went through, both for himself and for wondering how our 2 year old son would grow up without his Mummy. During this time, I underwent 6 debridement operations to my stomach and my left upper thigh. The cuts went so deep I firmly believe I would be dead if I hadn’t been so overweight and had tissue to spare. They woke me up thinking that all had been caught and congratulated themselves on a close call successfully dealt with. However, a few days later, I collapsed again and underwent a further 3-4 debridement operations – they hadn’t fully caught the bug and it was spreading further to my abdominal flanks. Additionally, it affected my stoma site, meaning they had to re-site to a less ideal place.

I woke to faces and voices telling me that I had been very poorly and that they had all been worried about me. I had no idea I’d had NF. I had no idea what date it was. By this time I’d been in hospital for approx. 6 weeks. It was now the middle of August and I’d missed the Olympics! I was being fed through tubes, couldn’t move any part of my body and couldn’t speak. Eventually I could write short messages on a pad to ‘talk’ to my husband and ask questions. I was moved to HDU when I was officially out of danger and then down to a main ward at the end of August. 11 weeks in hospital so far…

Because dressing changes were so agonising (they had tried it with me awake twice and painkillers didn’t touch the sides), I was taken to theatre twice weekly and put to sleep. This happened until the end of October, so I had approx. 30 general anaesthetics in 4 months. A new Vac Pump was fitted sometime in September and my feeding tube was removed, though I continued to be unable to eat and vomited constantly. At least the 5 stone weight loss is a silver lining!

September to December was one long round of daily visits from by husband, being sick and in agonising pain, sleepless nights, being starved for anaesthetic and desperately waiting for the weekend when I could see my 2 year old son. By Christmas, I had been in hospital for 6 months and missing him felt like a bereavement. I couldn’t say his name without crying. On the days I felt well enough, I bought presents online to plan for a Christmas I knew I couldn’t share. Because I had been weak prior to my hospitalisation, because my diagnosis was delayed for so long and because my wounds were so deep, it was December 21st when I could finally undergo skin graft surgery. I had a 21cm x 21cm square taken from my right thigh and like a fellow survivor has described, my actual skin graft took well with little pain but my donor site hurt more than I can describe. Almost as much as having over 200 staples taken out of my stomach AWAKE.

In January, I was sent to a rehab centre to learn how to sit, stand and walk again. However, as this was even further away from my family and the staff weren’t at all friendly or helpful, I nearly suffered a nervous breakdown. I begged a counsellor to arrange a transfer closer to home and I got there early February 2013. What marvellous nurses! The opportunity to see my son each day and their encouragement meant I finally made it home on the last day of February, 250 days after first entering hospital. I was able to slowly walk up one flight of stairs, which was enough but not entirely helpful when we live in a 3-storey townhouse.

My donor site however, had not healed and I still required constant visits to the hospital (a 40 mile round trip) for dressing changes, visits to the stoma nurses, physiotherapy and for all the other little medical issues that crop up when you’ve been so ill. I was devastated to send my son to nursery full-time when I came home but I was not strong enough to look after him alone and my husband needed to work to keep what little financial stability we had. Xander’s one and only grandparent moved herself in when I was unconscious and stayed with him until I came home and for that I will be forever grateful. The distress and upheaval he has experienced in his short life is more than anyone should go through.

I was so strong in hospital. Everyone kept telling me how well I was coping. But it all came apart in the summer. Crippling anxiety, suicidal thoughts. The only thing keeping me alive was the fact I couldn’t let my son grow up without a mother. I poured my liquid morphine down the sink to stop myself from taking it and I begged for counselling. None was forthcoming. I was put on a never-ending waiting list until one day I broke down at one of my hospital appointments talking about suicide and an appointment miraculously came through. I had gone from being an attractive, self-assured 36 year old to someone with a stoma and hideous scarring. Of course the tiredness doesn’t help you to feel better – when I took over looking after my son at the end of May, I would often get through the day like a zombie and be in bed before his 7pm bedtime, sleeping through the night. I don’t mind saying this has put a huge strain on my relationship. 8 months living apart on top of such physical scarring and tiredness. I was a mess physically and emotionally.

4 months ago in August, I found a different site from this one and I realise how lucky I am to have survived NF as so many others don’t make it. My stamina has slowly returned; only my donor site remains unhealed, though I suspect it will be bandaged for just another month or so. More importantly, I have an amazing husband who loves me and a 3 year old son whom I adore. Every day watching him grow fascinates and delights me. I am writing this just a few days after Christmas and what a Christmas it’s been. So very different from last year!

It hasn’t been easy but I’m proud of where I am less than a year after I’ve been discharged. I’m volunteering in a local primary school so that I can work when Xander goes to school next September. Ian and I are planning an exciting house move in a new location and I stop and take notice of the world and all that I can find pleasure in. I wouldn’t wish the agonising physical and mental pain on my worst enemy but coming so close to death has meant I have never felt so alive. And the scars mean I’ll never become complacent and forget.

It often feels as though no-one else can understand what I’ve been through. My husband has been (and remains) amazing but his was a different journey. But hearing others’ stories on this site helps and so I share my story too. What a nightmare! But less than a year after I made it home, I’m happy and looking forward to a fantastic future.

If anyone would like to get in touch to talk about their experiences, I’m very happy to give my details. It’d be good to chat to a fellow survivor.

Thanks for listening,
Lesley (Dec 2013)

Liam’s story

Hi I’m Nicola Vaile, mum to Ryan who’s six and Liam who’s 2 and married to Steve and living in South Wales. This story is about our son Liam. It all started on September 9th 2005, Liam was playing happily in the garden when he let out the most piercing scream. After picking him up Liam was complaining of his left arm hurting I looked for grazes, cuts and bites but couldn’t find any, only a slight swelling around the wrist of his left arm.

After 35 minutes of Liam crying and things just not feeling right we took him to our local hospital to the A&E department. After numerous x-rays and no breakages found, we were sent home, to return the next morning for more x-rays.

During the night Liam had a violent temperature and his arm was swelling and turning red at a rapid rate. In the early hours of the morning of the 10th September we returned back to the A&E dept, more x-rays were done showing up still no breakages by this time Liam had very bad diahorrea and vomiting.

By 10am they had admitted Liam onto the ward saying they thought he might have what they called ‘compartment syndrome.’ During just a few hours Liam became semi conscious only waking and asking for a drink which he was drinking bottle after bottle and the arm was extremely swollen and turning like a purplish colour.

At this point Liam was put onto an intravenous drip as he was becoming dehydrated. Later in the afternoon we were told a specialist team from the Heath Hospital in Cardiff were on there way to transfer Liam.

Within four hours of them arriving we were told Liam was now on full life support and fully sedated and that all his vital organs were failing. We were told at this point that he was probably not going to get through this and there was no more room for Liam to get any sicker.

We arrived at PICU in Cardiff at !am on Sunday 11th, by 4am we were told they were taking Liam to theatre and making a cut from his wrist to just above the elbow and to cut away some tissues.

They were then sent to the microbiologist for analysing and by the afternoon, Liam was deteriorating very fast. His kidneys had failed so he was put on dialysis, he was being given over 18 drugs and the ventilator was breathing for him.

Toxic shock and septicaemia had set in too. By 7pm that evening Liam was being rushed back to theatre and we were told Liam had Necrotising Fasciitis. We signed the forms for them to amputate Liam’s left arm above his elbow we had no choice. We we told Liam might not even make the op.

The next 3 weeks became a blur just praying that our little boy would be strong enough to pull through this horrific journey and he did, but with complications. Liam had severe muscle spasticity so was transferred to Morriston Hospital in Swansea so that they could do a closure on his wound, as for 3 weeks, it had been left with just a loose flap of skin, so that every day they could take down this dressing to make sure that all was ok.

Liam had another two operations whilst in Morriston, one to do the closure and the second to put botox injections into Liam’s legs and right arm and to put them into plaster cast splints so that the physios could start to do Liam’s intensive physio which would be ten days after the botox injections.

After nearly five weeks in 3 different hospitals we were allowed to bring Liam home unable to walk or talk and not even communicating with anyone we knew that this was going to be another tough time for Liam. By the middle of November Liam had started walking and was talking again (well you can just imagine how this felt to us as a family) .

By the end of December we started to notice a deterioration in Liam’s right hand side of his body, he now swings his right leg out and his foot is turned inwards.

At out recent appointment Liam has been diagnosed with dystonia and cerebral palsy due to Liam having to be resuscitated during his illness with Necrotising Fasciitis.

It’s now 23rd January 2006 and Liam is unable to do lots of things that he used to do but when we wake every morning to his happy smiling face and cheerful personality is such a great reward to have him here with us, after being through such an horrific journey he has been on in the last four months.

We will keep you all posted as to Liams progress and the many hospital appointments that we are attending.

Love and best wishes to you all,

Nicola Vaile x

KONICA MINOLTA DIGITAL CAMERA

Mal’s story

It was Tuesday the 14th October 2003; I had been off work for about four days with a very sore throat. I was in my local gym the day before, although it was a sluggish workout – I later realised why.

On Tuesday morning I potted about clearing my garage. At about 12 o’clock I felt a dull pain in my left leg (calf area). I decided to have some lunch and about 1pm, while I was eating, the pain occurred again but more painful and was lasting longer.

Half an hour later it was still hurting and my leg started to stiffen up. I was beginning to be concerned as I could hardly walk. I thought that it could be a deep vein thrombosis. The pain was getting worse and I thought about getting to the hospital, at this point I realised that I would have trouble operating the clutch pedal in my car.

At 2pm I phoned NHS Direct, they told me that if I required an ambulance I must dial 999. So that is what I did and it arrived about 12 mins later. The paramedics asked me a few questions and said that they would be taking me to the A&E Department at Kingsmill in Mansfield. As we travelled the paramedic asked questions and filled in his forms.

On arrival they got me into a wheel chair, checked me in, said cheerio and I thanked them. I waited about 45 mins before being called. The Doctor asked me what the problem was, he examined my leg and asked me what I did for a living. I worked in a distribution centre at the time and I also mentioned that I went to the gym 2-3 times a week and also jogged 12-15 miles a week. He said that it was possible that I could have pulled a muscle and gave me some painkillers, if they were not working to go back to hospital.

By this time it was 4pm and as my wife worked at the hospital and finished at 4-30pm I got in touch with her and she collected me outside the A&E Dept. She was concerned about my leg and I informed her what the Doctor had said.

We went home and had some tea and later supper, and went to bed about 11pm. I awoke at about 3pm with pain in my left leg and I went to the bathroom and soaked a towel and wrapped it around my left thigh and lay on the bed, but I was restless. At 4:20am I got out of bed with more pain and noticed my thigh was swollen quite a lot. I woke my wife and we decided to go back to hospital. We arrived at 5-15am and we had to find a wheel chair as I was still having trouble walking.

I saw the triage nurse and she found my notes from the previous day. By this time I was feeling very ill and very dry and really did not know what was happening, I was then taken to a consultant room. I remember various people kept coming and going but not actually doing anything, they kept on asking me questions and how was I feeling.

I do not know how long I had been there when a consultant came in looking very smart in a black suit and white shirt. He took one look at my leg and said straight away what it was. He had an assistant with him, and then more and more people appeared (about 15) all discussing my leg.

Then just like magic they all disappeared except the consultant and my wife, he then asked her to leave the room. He explained to me that he had some bad news for me, he said that I had a disease called NECROTISING FASCIITIS and that it was at the dangerous stage and he would have to amputate my leg straight away, and that time was crucial and he had to get on with it, he gave me a minute to let the news sink in. He then gave me a consent form to sign – then I was wheeled away.

More questions were asked – had I been abroad? I had been to Spain 6 wks before. Had I been working in the garden? I had done the lawns and the borders. He ruled out Spain, as I had been back 6 weeks.

He again informed me that being at the hospital at this stage of the infection was the best time to act. Apparently when they do this type of operation they amputate so much to begin with and then leave the patient on the table for an hour and check if they have to debride further. In my case it happened twice and the final amputation was to my pelvis.

Late that day I was transferred to Chesterfield Royal Hospital with a police escort. I was placed on a life support machine for quite some time and then into intensive care – I was out for about 15 days and the nurses informed me that I had had a rough time.

After coming round it was nice to see the many smiling faces of my family and friends, I think everyone had tears in their eyes. I was in intensive care for another week before being moved to a side ward, and then transferred to Nottingham City Hospital.

After a week I had my wounds cleaned in preparation for skin grafts. I was transferred back to Kingsmill Hospital for another week (I don’t know why) then back to Nott’s City again for skin grafts. I had the skin from my right leg used for the graft.

After about another week it was back to Kingsmill where I stayed for a further 3 weeks and finally home on the 19th December 2003 – just in time for Christmas.

The next day the district nurses redressed my wounds and they came everyday for about 9 months, and then visited every 5 days, then 3 and then once a week. At the same time I was also visiting Nott’s City Hosp 2/3 times a week to see the Doctor and a chap named Steve who made my prosthetic leg, which includes a waist corset made from silicone, it took six months to make and at the same time gave my wound time to heal.

In June 2004 I was ready to start physiotherapy at Kingsmill Hospital. I did this until September, they then decided I was ok to wear it most of the time. I wear it most days and manage to mow the lawns, clean the car and also go to the gym 3 times a week.

But I must say it is not the most comfortable thing to wear and weighs heavy towards the end of the day.

I would like to thank everyone who was involved in my trauma, and especially to my mates whom I know from school some 40 years ago, they never missed a day visiting me whilst I was in hospital even though I was out of it for three weeks they were always there, now that’s what I call friends.

Mal

melanieMelanie’s story

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 viral infection. By late afternoon I was so ill I went to bed. I carnt 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 though 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.

Melanie

patriciaPatricia’s story

I lost my Darling Wife Patricia, to the infection known as “Necrotising Fasciitis” on 1st September 2004 at 02.00am – an infection I had never ever heard of until then.

The story starts on the evening of the 18th August 2004.

We had thought that Patricia’s problem was a case of mild food poisoning initially, following an evening meal of ham salad, but after 4 days there was no improvement, in actual fact a marked deterioration, which started with nausea and diarrhoea and a sense of lethargy.

Pat had historically been a normal very healthy & fit person, apart from Glaucoma & a touch of arthritis in the leg/arm & hand joints and that would come & go with the weather!

I have to admit to being extremely concerned. Finally after 5 days of me begging her to let me call a doctor, Patricia conceded and finally allowed me to make an appointment for her to go to our local Health Centre in Calne Wiltshire.

We had an appointment for the following day a Tuesday, I arrived home on the Tuesday 24th lunch time, only to find Pat in floods of tears and apparently unable to manage to walk without a considerable struggle, I went straight to the Health Centre and requested a Home visit from the on-call Doctor, who turned out to be my own Doctor, he actually arrived within 20 minutes of me requesting the call.

He examined Patricia, both of us relayed all the symptoms as well as we could and I also mentioned the fact that Pat had a large dark blister appear in the last couple of days, my Doctor seemed fairly sure that this was merely the after effects of a case of Food poisoning, and agreed that it would be wise if Patricia was admitted to Hospital for a 24 hour session on a glucose drip to boost her up and that after 24 hours on the drip all should be well.

An Ambulance was suggested, but as on the face of it, this was only a minor ailment, I suggested that I should take Patricia in myself, rather than incur costs to the NHS unduly, it seemed to us a bit drastic to call for an ambulance to have a stint in hospital on a drip.

So less than 2 hours later at around 4.30pm, in the Great Western Hospital in Swindon, the young A & E dept doctor, a Dr Kenway, who was running the A & E dept had checked over Patricia and within minutes rushed her into the “Resuscitation” room of the A & E dept, frantic testing was being carried out numerous drips were being installed and X-rays were taken.

Dr Kenway appeared extremely concerned at Patricia’s blood pressure, He then proceeded to carry out numerous more tests and due to this doctors diligence, he then enlisted the help of a number of consultants one after the other to look at Patricia (one of which asked me what we were doing in the A & E dept – I got a distinct feeling he felt we were wasting everyone’s time).

One consultant, a Mr Hocken returned time after time to arrange for various further tests to be completed, he seemed extremely concerned, and finally he called me in and it was then that he explained to me that in his opinion, he was pretty sure they knew what was wrong and that if they could not get Patricia booked into a specialist unit in another hospital that could cater for her, that they may have to operate themselves during the night with telephone guidance from doctors in another hospital, they told us that most likely Patricia had only hours to live, this was now approx 8.00pm!

The Doctors at the Great Western Hospital even tried in vain to organise an airlift to speed up the hospital transfer by enlisting the aid of the Wiltshire Air Ambulance, but it was already fully committed.

Less than 8 hours after arriving at the Great Western Hospital Patricia was moved to Frenchay Hospital in Bristol by a normal ambulance, i was advised to go on ahead as they would be passing me en-route at very high speed, I arrived at Frenchay Hospital some 10 minutes before them, without having to exceed the speed limit, I never did find out what caused the delay.

On Arrival at Frenchay approx 1.00 am weds 25th, Patricia was taken to the oncology ward (probably only because it was all a very big rush, and this ward had a bed free) the Nurses transferred Pat to a bed & within minutes Doctors & the resident Plastic Surgeon Mr Lea were busying themselves with more tests and the Nurses then started to prep Pat for Theatre, what seemed like minutes later, I was running alongside as they transferred Patricia (all within less than an hour of arrival) to the “Plastics” operating theatre.

From here on things became a bit of a Blur, during the operation they had to “abort” due to Patricia’s weakening state, during the early hours 3-4 am I really cannot be sure, I was quizzed by the surgeons about Patricia’s health and all her Medical history.

I started to think then that because of her age (Patricia was then an extremely young 70 years of age, however did not look or act her age! More like 50 going on 35) that the surgeons were not going to proceed.

I was told that they were trying their best to improve Patricia’s chances of surviving an operation with massive doses of antibiotics during the next hours, and that Patricia was currently in the ITU dept and if – yes IF she survived then they would then consider restarting the operation later that day.

So Wednesday 25th I was able to sit with Patricia until 9.00 am, I then came home briefly to collect Patricia’s Brother (who until then was totally unaware that Pat was ill at all) whilst the doctors were doing their tests & ward rounds in the ITU.

Patricia returned to Theatre again around noon and was gone for nearly 5 hours, returning from theatre with what appeared to be a form of cling film wrapped around her from just below the Bust area to just above the knee, they had apparently “de-brided” the entire surrounding area of skin and soft tissue/flesh to try to stem the infection. It was then that we were told what Patricia was suffering with – “Necrotising Fasciitis” caused by something as simple as a common abscess and an infection of the streptococcal strain.

We were told that even though Patricia had made it through the initial operation – all carried out by specialist “Plastic Surgeons” that we were an awful long way off from a position where they could give us any hope of a successful outcome.

It would at least be 5-6 weeks before they could tell how Pat would come through this, at this time they had managed to retain all Pat’s vital organs in the area of the “Blister”, but only time would reveal if they had gone far enough with the de-briding, what did concern me was that my Dear Patricia had so much skin removed, that I could not see where they would be able to find enough remaining skin to enable them to harvest in future for grafting onto the affected area.

Over the following week, Patricia was completely sedated and would regularly go to Theatre for dressing changes as this could only be completed in a totally sterile environment, and on a number of these trips to Theatre a certain amount of further de-briding was carried out.

The ITU staff were absolutely wonderful and tended to Patricia’s needs unstintingly, of course Pat was dependant on a dialysis machine and had help breathing with other equipment as the infection had apparently started to shut down Patricia’s vital organs.

What seemed like gallons of fluids & antibiotics were being pumped into Patricia to help her fight the infection, together with what seemed to me to be at least 6 or more massive electrically driven drivers pushing enormous intravenous syringes, set up to continue when each of the large syringe’s empty thus keeping a constant flow.

What actually turned out to be 17/18 hours before Patricia gave up the fight, I was sat with her during the doctors ward round (still in the ITU) I overheard the Consultant telling the junior doctors about Patricia’s situation and that they were fairly confident that they had removed all aspects of the initial infection.

Only time would tell if there would be a secondary infection, yet strangely I had noticed that morning for the 1st time in a week the same aroma that I had picked up upon the day that I had called for a doctor to visit Patricia at home a week earlier, I sensed all was not well, how true that turned out to be.

The moral to this story is, if in doubt, do not under any circumstances assume that you know what you are dealing with, we both thought quite wrongly that things would improve and we were dealing with a tummy ache due to food poisoning, How wrong we were, Patricia is no longer with us & I have to live with the thought that I could have and should have done more!

The strange thing is that I understand only a 1000 cases a year are reported, yet I live in a small town in Wiltshire, I know of 1 other person a godparent to a very good friend of ours who died of this and I also have a very good friend who has survived NF, this tends to make me think that there is probably considerably more than 1000 cases a year, perhaps due to ignorance of the symptoms a large number go undetected and unrecorded and are actually recorded as other ailments when in actual fact they are in reality NF deaths.

Peter J L Townsend

drpatrickfieldingPatrick’s story

Due to the sometimes, unpleasant nature of Necrotising Fasciitis, we have given you the choice as to whether you would like to see the personal pictures that Patrick has kindly shared with us. Please be warned, they are very graphic. View Patrick’s pictures.

My story begins in April 2004. At this time I was 34 and married with 3 children aged 5, 4 and 1and my wife, Sian was pregnant with our fourth child. I am a doctor and was then working as a senior registrar at the University Hospital of Wales in Cardiff (UK). I was due to qualify as a consultant radiologist in October 2004. We were part way through a building project to extend and improve our house.

I had enjoyed perfect health up until April 2004. On April 27th I noticed a slight pain in my right shoulder. I went into work in Cardiff, during the day a colleague performed an ultrasound examination of my shoulder but he found no abnormality.

Later that afternoon I went to Prince Charles hospital in Merthyr Tydfil where I worked as a consultant for an afternoon a week. After work a colleague asked whether I would like to go for a drink with him however by this stage I was in some considerable pain and instead I took myself along to the A&E department. X rays were taken but again no abnormality was seen.

I didn’t feel well enough to drive home so Sian collected me. At home I took the various painkillers that I had been prescribed, however the pain got progressively worse and at 3am the following morning I called for an emergency ambulance, this time to take me to Neville Hall hospital in Abergavenny.

Further X rays were taken however no diagnosis was made and I was sent home at 7am. I stayed off work on the 28th April . Sian went to work, however on her return at 5pm she saw that I was clearly unwell and that the pain in my shoulder was worse. She took me back to Neville Hall hospital at 6pm.

I remember walking into the A&E department and being taken into the examination cubicles but beyond this I have no recollection of the following month. Remember that this was within 48 hours of first feeling a slight twinge in my shoulder. The doctors in A&E could see I was unwell with a slightly raised temperature and white blood cell count.

They performed blood gas analysis which showed that I was acidotic, this is non-specific finding which, however, indicates a severe systemic illness. A CT scan was organised the same evening and this showed large amounts of air within the muscles and soft tissues around my right shoulder and extending down my right arm and down the right side of my back.

This finding indicated the presence of bacteria feeding on the muscles and soft tissues and producing gas as they destroy the tissue. The diagnosis of necrotising fasciitis was then made. By this stage I was clearly unwell and very confused.

Immediately following the scan I was taken to the operating theatre where surgeons removed large amounts of affected skin, muscle and soft tissue. The affected tissue literally fell apart in their hands. I was taken to the intensive care unit and my condition gradually worsened.

At about 1am Sian was called to come in because my condition was critical. The following days and weeks can only have been a living nightmare for Sian. The consultants explained that I had septic shock due to the necrotising fasciitis. Septic shock is an extremely serious condition in which the cardiovascular system is unable to supply adequate blood and therefore oxygen to vital tissues due to overwhelming infection.

Sian was told there was about a 1% chance of my survival.

As the days passed I developed a condition called multi organ failure in which numerous vital organ systems fail to work adequately. I developed failure of the cardiovascular system, respiratory system, hepatic system as well as the renal system. Renal failure meant that I needed haemofiltration for approximately 6 weeks. I also rapidly developed coagulation failure. This means that the platelets and clotting factors in the patient’s blood get used up and there are none left to stop bleeding.

I therefore developed torrential bleeding from my wounds. I required transfusion of over 80 units of blood to replace these losses. On several occasions when death appeared imminent, the priest was called to administer last rites. Apart from the necrotising fasciitis, I also had to fight a number of infections acquired in hospital and these included MRSA and also VRE (vancomycin resistant enterococcus).

Sian began to believe that death was inevitable and began to make arrangements as to who would write my obituary. She began to feel that the numerous operations and interventions were pointless and unfair.

Sian somehow managed to carry on looking after our 3 young children and to spend a great deal of time by my bedside. She was also left to struggle with the project management of the building works at our house. This was possible because of the excellent support of our friends. Gradually as the weeks passed my condition improved.

The treatments I had received had however taken their toll. I was left with a massive wound over my back in which the surgeons had removed all of the tissue to my bare ribs. During my critical period I was treated with huge doses of drugs called ionotropes. These powerful drugs have many effects but amongst these is the redirection of blood away from the peripheries (arms and legs) to supply blood to the heart and brain and to maintain blood pressure.

Because these drugs were used in such massive doses over a prolonged period there was severe blackening of my arms and legs. At one point it was felt that I might loose all 4 limbs. Again miraculously, the limbs recovered with the exception of my toes which all remained black and dead. The appearance and type of damage is in fact identical to that seen in frostbite.

After 8 weeks at Neville Hall hospital my condition had stabilised and I was now out of danger. I should say at this stage that the standard of care I received at this hospital was second to none. The skill and dedication of the ITU and surgical staff are no doubt the cause of my survival. I owe my life to them. It was however time to move on.

I needed to undergo skin grafting to the huge wound over my back and the back of my arm. I was therefore transferred to the regional centre for burns and plastic surgery at Morriston hospital in Swansea on 8th June.

At Morriston hospital I underwent numerous operations to clean the wound, remove further areas of dead tissue and the majority of my scapula (shoulder blade). I also underwent amputation of all of my toes and parts of some of the metatarsals. Eventually I was considered fit enough to attempt split skin grafting. This is an operation in which half of the thickness of the skin from a donor site (in my case my thighs), is removed and following treatment is applied to the wound.

Amazingly there was excellent “take” of the graft to my arm and back with only a few unhealed areas. There also came the task of getting me to sit and to stand. It is amazing how quickly the body becomes weak after periods in bed especially when ill. It was a massive effort to relearn to stand and subsequently to walk along with the expert and professional help of the physiotherapists at Morriston Hospital.

I was eventually discharged home on September 26th after almost 5 months in hospital. District nurses came to dress my wounds on a daily basis. On 5th October, Sian gave birth to a beautiful baby boy, Samuel Patrick Fielding 8lb 10.5oz. I was present and cut the cord.

My troubles were not however over; I very soon developed a “sinus” which opened over my back. This discharged pus. After several scans and operations it became clear that I had developed septic arthritis of the shoulder joint (That is to say a bacterial infection of the shoulder joint.). The pus was tracking out from the affected joint to the skin surface. I therefore underwent further surgery to wash out the joint. I was also treated with a prolonged course of antibiotics.

I also had a wound under my armpit where the graft had not taken. My plastic surgeon felt that the only way to close this wound was to perform a “flap” procedure. This involved several further operations to take a flap of skin from my back, twist it round and attach it over the wound in my armpit.

This was however not entirely successful as the end of the flap “died” due to poor blood supply. I then needed two further operations to remove the dead flap and replace it with skin graft.

These further operations lasted until February 2005. Since then my wounds have gradually improved and at the time of writing I only have a tiny wound on my left foot that I dress daily. I have started to drive again and over the last 5 weeks, I have been back to work, part time. My main problems are that I do get quite a lot of pain in my feet especially on walking or standing.

For some time I was prescribed methadone as a pain killer and I found it extremely difficult to come off this drug. I also have considerable weakness of my right arm which makes it difficult to perform ultrasound examinations, I am however able to write and I can perform a lot of other work duties including reporting CT, MRI and nuclear medicine studies.

At home I am able to help out with the children although picking up the older ones is difficult! I take the children to swimming lessons, the cinema and to parties. I am also able to do a bit of DIY around the house. Things are by no means perfect, and life will never be the same again but there are still things that I can get pleasure from.

I wanted to post my story to try to give some encouragement to other people who may be going through a similar experience. Perhaps your relative is currently very ill with this condition. I wanted to emphasise that although this can be a deadly condition, even if the patient is very seriously ill, one can recover from the illness and go on to have some quality of life.

The road to recovery is very long, expect setbacks along the way, take each day at a time and try to break down the task of recovery into smaller achievable goals. You are not alone. Although everyone’s experience of this disease is unique to them, there have been other people that have had a similar illness to you and they have gone on to survive and recover. Although it may seem difficult, a sense of humour is a great help in the most difficult of times.

Patrick

Update on my story dated 12th April 2004

It’s now about a year since I posted my story. Since then a couple of things that have happened to me that I feel may have affected and that I feel are worth sharing. The first thing that has happened is that I have realised that the care I was given early on in my illness was not all that I should have been.

Reading through my story again I am struck by the enormous effort many staff made to make my survival possible. I am, and will always remain eternally grateful to those who worked so hard to help me to recovery. Over the last year I have fought (and eventually succeeded) in a claim against my life insurance company to receive payment on a critical illness policy. For those not familiar with these policies, you pay a regular premium as insurance against a variety of serious illnesses and conditions such as heart attacks or cancer. Most would agree that NF is an extremely severe illness and drastically affects quality of life for survivors. However getting the company to recognise this and pay out was a real battle! As part of my research I obtained a copy of my medical records in order to extract information to support my claim.

I was very saddened and disappointed when I reviewed my medical records. It appears that although the treatment was very good after the nature and severity of my condition was appreciated, there were significant delays in diagnosis and inadequacies in my early treatment. Having carefully reviewed all of the documentation I was left with the unfortunate conclusion that there were a number of significant mistakes and delays in my early diagnosis and management and that these led to my condition being more severe than it would otherwise have been.

Amongst the many problems were a failure to perform a basic physical examination including pulse and blood pressure, a failure to perform basic laboratory tests, a doctor ordering an x ray of the shoulder, this being performed and showing gross abnormalities but no one looking at the x ray. My being left on trolley in the accident and emergency department for 5 hours with an extremely low blood pressure, not receiving adequate treatment and not being reviewed by a senior doctor. I subsequently discovered that a doctor had been disciplined for the way they managed my case, although I was never informed of this by the hospital. Finally it became clear that a doctor had after the events gone back and altered the medical records in order to justify their actions.

Needless to say I was very sad and disappointed by all of this. The reason I am sharing this however is that I think that errors in diagnosis and management are common in NF and I suspect that there are many other patients and families who feel aggrieved and question how the condition was not diagnosed and treated earlier. I was in a doubly difficult position because I personally knew many of the staff involved in my care and had friends and colleagues at the hospital. It was therefore a really tough decision to decide to pursue a complaint against the hospital. Certainly it has cost me several friendships. As a doctor and a patient I have now been on both sides of the complaints process and my experience has been a negative one from both perspectives. In my case it took a full 9 months for the hospital to make any response to many of my concerns. I am now seriously considering perusing a case for medical negligence against several of the doctors involved. I do this with a very heavy heart but unfortunately I feel I owe it to my children to at least take further advice as to the likelihood of successfully pursing a claim. I do not think I can give up the possibility of securing quite considerable compensation, not for myself but for the opportunities this could give the children. I thought it was worth sharing this because I think complaints and litigation are a part of many peoples experience of NF and to leave this out would not be telling my full story.

The final thing to share is also sad and rather more personal. Unfortunately Sian and I are in the process of going through a divorce. I now live separately and see the children on the weekends. There were problems in our relationship before my illness however I have no doubt that NF put an immense strain on our family in general and our relationship in particular. Certainly we never reestablished a physical relationship after my illness. It wasn’t just the effects on my body, but also the psychological trauma we had both been through. The illness also brought out stains in relationships amongst the extended family. In the end Sian felt that she no longer wished to continue with the relationship. Given everything that she went through I don’t think I can blame her. Again I only share this because it is an important part of my story and to miss it out would be telling only a part of the story.

Survivors of NF usually have to bear quite significant physical scars and I have been no exception to this. Over the last couple of months, as I have started to meet new people and explore new relationships, the scarring and disability caused by NF have been real hurdles to overcome. I have found however that these hurdles have mainly been in terms of my confidence and that other people have been able to accept me as I am and my body as it is. This has been a real revelation for me and has greatly improved my view of human nature. Genuine people do look through the scars and see the person beneath. Perhaps it is only now that I have come to understand that NF can drastically alter your body but underneath you continue to be the same person.

These last issues are obviously deeply personal. I felt it was important to share them because again I think this sort of issue affects most NF survivors in one way or another.

Patrick

russellRussell’s story

It all happened towards the end of March 2013 . It was a normal day, except for one thing. I had finished the night shift, and as per usual I wanted to be up nice and early so I could spend some time with my family before going back to work. The difference was today, I couldn’t pull myself out of bed. I had a massive pain in my groin and I felt really woozy.

I booked an appointment at my GPs and he told me that I had an abscess on my groin and that antibiotics should be able to clear it up. Well three days later I felt worse. The lump was getting bigger and I was feeling terrible. I went back to him. He had another look and decided it would need draining. I was booked immediately into the Medway Maritime Hospital where a few hours later I was under the knife for what I thought at the time should be a fairly routine operation. I remember waking up in the award with my partner there, and I remember being impressed with the fact that Danone yoghurt was to be part of my daily medication . I remember thinking how modern the NHS was becoming. Long gone were the days of matrons and thermometers, we were being fed little tubs of flavoured yoghurt. To this day my memory  is still hazy but I remember desperately wanting to come home to be with my family., what I do remember is a nurse coming to change my dressing in my bed because it was leaking. As he took the dressing off, I will never ever forget the smell that came from the lower part of my body. It is hard to put in to words. All I can say is that it smelt like dead rotting meat and fish combined, and it was at that point that I started to panic. I just knew that something was not quite right.

I called my sister in law, Who is  a nurse and she came straight to the hospital to see me. It was only to reassure me as family members do, that there was nothing wrong everything was fine I was in the best hands etc.

I slept a bit easier that night but I was still in loads of pain and I could not get that smell out of my head.

I was discharged the following day and told to rest for a couple of days to recuperate.

I was also informed that a district nurse would come round the following day to change my dressing for me. I hobbled in absolute agony to the car, and my partner drove me home. I spent the rest of the say on the sofa and I was unable to do anything for myself due to the severe amount of pain I was still in. When I woke up in the morning after spending the night on the sofa, I was finding it increasingly difficult to do anything. I had the mother of all headaches, my partner tells me now that I was saying incoherent things, and in my own words I emailed work saying I wouldn’t be in tonight because “I felt like I had been hit by a bus”. I have no recollection of sending this email or any of the numerous text messages I sent around this time. It is only in the last few months that I have been through my phone and seen what I sent.

To cut a long story short, my wound site was leaking. It was stinking, and there was no sign of the district nurse. My partner phoned the GP who suggested that we make an appointment with the local health centre and they would be able to do the dressing for me. I vaguely recollect, my partner telling me that she had got me an appointment within two hours, and I do remember very well driving down there. Purely because of the severe pain. I remember sitting in the waiting room and all I could smell was that same smell over and over again. My trainers were covered in stuff that had been leaking from the wound. I remember the nurse an absolutely lovely lady, coming in to the waiting room to help me down to her room where I laid on the bed. Pleased of the rest, my head pounding and I knew that this was my final destination and that she was going to take care of me, change the dressing, and give me some tablets to ease the pain.

Little did I know at the time that this was just the beginning of my adventure. The district nurse took one look at the wound, physically held her breath took one look at my partner and said to her. “Iam sorry I can’t treat this. It’s infected.” She made a phone call and told me to get straight back up to the hospital where they would be expecting me. I don’t remember the journey up there, I don’t remember going in the hospital I don’t remember being readmitted. I do remember being sent for a CT scan, and I do remember a nurse putting a finger somewhere where I really wish rather she didn’t have to, but I was assured it was for a good reason !!

That is my last memory. Bearing in mind this was the 25th March.

My next memory is looking at the clock with the date on in the HDU ward. It was April 17th.

I will come back to that part in a minute if you will forgive me. I will continue with the story from that last memory. I have acquired this info from talking to friends and family, counsellors and reading my diary that everyone was keeping.

Having had the CT scan and a visit from an irate Doctor who could not understand why I had been allowed to be discharged, I was rushed into the intensive care unit, where I had been diagnosed with necrotising fasciitis.

I was placed into an induced coma and I had up to 22 operations where they would take me down to theatre, cut away any dead flesh and skin, and then take me back up to the unit to assess how it was all going. They fitted me with a urinary catheter and a bum bag and as time progressed they fitted me with a vacuum pump which used to suck all of the bad stuff out of my wound in between operations and cleaning. I had Sepsis as well and my family were told at one point that the next two hours were critical on whether I was going to make it or not. A horrific time for everyone. Well thanks to the hard work dedication and care of all the nursing and surgical staff, I pulled through and started to slowly recover.

Like I say my earliest memory is April 17th where I looked at the clock on the wall. I remember panicking and saying to my brother who was constantly by my bedside along with my partner. Shit I’m getting married in 3 days !! It was at this point that they decided to tell me what had happened to me, what I had been through and what the future held for me. The nursing staff had told my family that I would be expected to be in hospital until at least November and it would be unlikely that I would walk as they had stripped dead flesh away to my bone in some places.

Obviously I wouldn’t be getting married and all my honeymoon had been cancelled. I didn’t understand, I thought they were lying, I was confused upset and still bonkers from all the morphine. I was convinced I was in a hospital abroad. I was convinced that the nurses were trying to kill me. I was convinced I was going to die because I was so thirsty and they wouldn’t give me any water. Obviously this was because I was nil by mouth, but  I never knew this. I remember the pleasure of sucking an ice cube. I remember the satisfaction of my mum dabbing my lips with a wettened swab. I remember the pleasure of when I was allowed a jug of water and I remember how quickly I drunk it. I remembered one of the surgeons coming to see me and telling me that he was going to fix my leg, and from this moment on I knew he was someone special. In my morphine state, he became the witch doctor. He was the man that was going to save me , he was going to make me a new leg. I could tell you so many of my Morphined dreams as I call them. To this day I don’t know which ones are real, and which ones my mind has fabricated. I will tell you a few more, just so you know what the mind is capable of. Feel free to laugh, I do now, when looking back. My new leg which the witch doctor was making me had to be made of the finest chocolate, and for this we would need to travel to Switzerland, for which the nurses would change me every day to get me looking my best. When I went to bed at night the zombies used to visit me. I asked my son to stay with me one night to help me fight them off, which he did of course !! my old next door neighbour came to visit me which I remember vividly. It was lovely to see him, he made all that effort to come and see me, and he even dressed up as a clown complete with makeup to be by my bedside. Madness, absolute madness. He asked me about my garden which I had worked on last summer and I had great pleasure in telling him that instead of grass we had used bake well tarts and that it looked lovely.

Like I say now I can look back and laugh, but at the time it was a living nightmare.

Back to the story. I remember spending April 20th my wedding day with all my family by my bedside. It was a special day. Even the man opposite me in hospital gave us a card, and his wife made us a lovely cushion. I knew that I had to get out and make this day real. A few days later, one of the surgeons came to see me. He told me that I would be going for another operation the following day and that if my wound was still healing the way it was then this would be the last time for now that i would have to go to theatres. They would try and change the dressing on the ward. I remember 2 things after this . Initially the relief of never having to hear the automatic doors on the theatre again, or the voices of the anaesthetists saying to me, Mr.Kimble you again. I was becoming part of the furniture. The other thing I remember was the tunnel was no longer endless. It sounds like a total cliché but I could see a light. This was the beginning of the end.

I recall making a special effort that afternoon when the physiotherapists came round, to get out of my bed on my crutches and walk around the ward, totally undignified as those hospital gowns that you make us wear leave nothing to the imagination.

I remember thinking. We are in April and I have got another 5 months of this minimum. I was determined to get out early.

I had my last operation, thanked all the staff for their hard work and assured them I would update them on my progress. They cared. They really cared.

A couple of days later the surgeon came back to the ward and told me that they would change my dressing in bed the following day.

I was excited, but I was nervous. I was frightened. This had started as an abscess on my groin, but now where they had cut so much away it was not only my groin, but bottom and lower back. He described the look of it as a Great White Shark bite. I couldn’t look at it. I didn’t want to look at it. It’s not because I was vain, far from it, but it was because this was still so unreal this couldn’t be me.

I remember the fear and trepidation the following morning after having my breakfast. Breakfast by the way is a massive time when you are in hospital long term. It means that another sleepless lonely night is over, and it is only a couple of hours before you can see your loved ones again.

I finished my breakfast. Got out of my bed for the overworked nurses to change my bed and generally look after my every whim and need, got back into bed and awaited the  big event. My partner Verity turned up at 10 on the dot as she had done every day, and we waited the surgeon to arrive at 12. At 11.30 I was given an extra dose of orimorph to ease the pain when they unwrapped me on the ward.

12.00 on the dot my surgeon turned up with 5 other members of his team. I remember thinking this was a biggie. 6 people to look after me. They brought me a full canister of entonox to suck on to try and ease the pain. They first of all disconnected my Vac machine and then started to remove all the dressing. I had a nurse on each side holding my hand and I had another 2 holding my leg in the air. Verity positioned herself so that I could see her at all times, and I started to panic. I was really frightened.  I frantically sucked at the entonox through the mask, waiting for the pain to strike. I remember thinking it’s going to come in a minute. But guess what. It never came. Every where was completely numb. There was no pain. There was no feeling. I was later told that this was quite normal as every nerve had been cut away from that area, and it could take months for it to return. Indeed it might never come back.

It didn’t stop me having another blast on the entonox though. That was quite soothing.

My ordeal was over. What was next on the agenda. The surgeon took a photo of the wound and told me that it was healing really well and would soon be ready for skin grafts.

2 days later they repeated this procedure, this time I wasn’t frightened. I was quite calm (more entonox).

This time though, the surgeon told me that he was going to send the photo to the plastic surgeons as he was certain I was almost ready for the graft , the wound was now only about 2 inches deep and was healing rapidly. It was at this point I asked to see the photo. I cried and cried and cried. It was horrific viewing.

2 days later I was shipped off to East Grinstead burns unit for what I thought was to be the penultimate part of my journey. I was told that I would be having the skin graft on the 4th May, and that I would be back in the Medway by the 7th May, to continue with the healing process.

I went to East Grinstead by ambulance car and was given a room on my own. They were giving me the same treatment as they would a burns victim as this was being treated in exactly the same way as a severe burn. I met the

plastic surgeon, who explained the procedure. It was again unreal to me what they planned to do. They were going to take a massive layer of skin from my left thigh, put it through a processing machine and apply it to my wound. If all went well this would take after a couple of days, and a new layer of skin would start to grow. I couldn’t believe what I was hearing. This was just unreal. I had seen that photo and convinced myself that this wound was never going to heal. It was just too big.

I went down to surgery the following day as agreed, and after the obligatory count one two three sleep, I remember waking up in recovery in extreme pain. Something was wrong though. The pain I was in was coming from the other leg. My good leg. It was bloody agony. I couldn’t believe it. It was laughable. After all I had been through and I was in pain from a graze, the skin donor site. It made me start to realise how damn lucky I had been when it came to pain. There was this big gaping wound on my right side which was completely painless and a scrape on my left thigh which was excruciating.

I had been told by my plastic surgeon that the next 48 hours were crucial. If the graft was to take properly first time, I had to be careful not to knock it or scrape it as I would have to go back to theatre for a second try.

Believe me when I tell you, I didn’t move a muscle for the next 2 days. I wasn’t jeopardising anything. I wanted out and I wanted out as soon as possible. I broke a few rules, but I knew in my heart it would be worth it. I peed in a bottle in bed, to save walking to the toilet and risk knocking it in some way. My partner helped me. I was meant to wash in the bathroom but I didn’t. I had a strip down bed bath. The furthest I went was from my bed to my chair for meals, and then straight back to bed. My gamble paid off. The plastic surgeon took a look 2 days later as promised, and was impressed. My graft had taken in over 80 % of where it was meant to. He used it as a platform for his own work. He asked if he would mind if he could photograph it and use it as a model example of a skin graft whilst teaching his students. Who was I to say no? I was impressed as he was. I needed perfection after this whole ordeal and he delivered. With over 300 staples securing it in place it shows the complexity and skill of the man.  I will be eternally grateful.

I was expecting to go back to the Medway, but I healed so well they decided to keep me at East Grinstead and let me finish my time there. I didn’t complain. I would miss the nurses and patients at the Medway, but the food was better at East Grinstead and the staff were just as competent and friendly.

A week exactly after being admitted to East Grinstead, I got the news that I had been waiting eight weeks to hear. They were discharging me in the morning. I was to be allowed home, on the proviso that every other day I would return for a dressing change. A round trip of about 110 miles. I didn’t care I was going home, I was getting better, I was going to lead a half normal life again.

And here I am today, the every other day dressing changes changed to every three days, to every week to every two weeks. I now go back to East Grinstead bi monthly for a massage on my scar. It is completely at skin level now, apart from a small dent on my back, but even that seems to be growing. I would love to report that I still have no feeling, but I can’t. Although the main wound is still without feeling, the outline of the scar itches a lot and sometimes drives me crazy. Like I said it started in my groin, so it isn’t in the best of places when I need to itch in public. A small price to pay for being alive.

Mentally I am struggling. I don’t think I will ever come to terms with what I have been through. I burst in to tears for no reason, I am paranoid about becoming infected again, and I get cross with anyone that puts themselves at risk. My son came home recently with his ear pierced. I lost the plot. He had risked becoming infected for the sake of his image. Extreme I know, but I just can’t deal with it. Through the charity the Lee Spark foundation I have met fellow survivors, who still after 10 years have all these feelings and emotions. Maybe one day I will get that tattoo that I wanted just before I went ill, but if I am honest I very much doubt it.

There are a few ways which I deal with my emotions.

Sometimes I do the wrong thing and block them out with a few vodkas, I know this isn’t right but for me, it works and sometimes it is the right thing to do. I have a couple of drinks and I cry. I talk to my partner about the experiences and I just cry and cry. It does me good to get it all out.

There are other times when I go and see my niece. My sons are grown up now and although they are sweet on the inside, are big ugly brutes on the outside,  Apart from my partner my niece is the most beautiful thing on this planet . She is coming up to 2 years old and when I look at her it makes me realise how lucky I am to still have the opportunity to watch her grow older every day.

I also have my follow up nurse from ICU. A wonderful lady who I have regular after care appointments with. I talk she listens. She talks I listen. She has become a good friend and I am hoping to work with her more in the future with regards to a patients view of Sepsis and Necrotising Fasciitis. She has asked me to speak to her staff in January if I am up for it.

I have Doreen and the Lee Spark foundation. Through the horror stories I read, the people I talk to, and the friends I have made, I have been made to realise I am not alone and there is always someone to speak to if I need anything at all. That is very comforting. Through days like today, if I can do some good and just help out in some way, then it makes it all worth it to me.

And finally my partner Verity, there every single step of the way for me, by my bedside every day, changing my dressings and putting up with my tears tantrums and feelings.

She made me the happiest man alive last week by becoming Mrs.Kimble after our initial disappointment and setback in April.

For someone who was still due to be in his hospital bed, I haven’t done too badly. Thanks to the astuteness of that district nurse, i am still here today. And thanks to the hard work and dedication of all the medical staff in both hospitals I was able to tell you my story today.

Russell

sallySally’s story

A year ago I died ! However I lived again to tell my story ! Almost out of the blue I was diagnosed with Necrotising Fasciitis having been readmitted to Hillingdon Hospital after having a small gland removed from under my right arm pit, a small operation which had I not suffered from MS, could have even been done under day surgery.

To my husband and family the news was devastating. My husband had seen me getting weaker not picking up since the operation, being told ‘it’s probably the effect of the anaesthetic ’ by the doctor who he eventually spoke to having called National Health Direct for advice.

We contacted our GP the next morning who came round and examined me and although I was not passing water could not find anything to be concerned about. By early the next morning having slept in my electric recliner chair because my husband and son could not move me , we called the Breast Care Unit of Hillingdon hospital. Answer phone, don’t open till 9 am.

Just before 9 am a friend popped in and we were all getting very concerned. I suggested we call the ward I was on and by good fortune my surgeon was by the phone. “Bring her straight in I will see her now ” he said but my husband told him it was impossible to move me, he needed an ambulance. “Try ” he said and for one of the first times in my life we thanked God I had a wheelchair and the riser chair and with my friend’s help my husband got me into the car and up to the ward where my surgeon was waiting.

He did not know what was wrong except he could see I was very ill and had me admitted straight away for a CT scan and tests. There was no problem with the wound . I was put on a drip to balance my fluids . The CT scan showed that the kidneys were not damaged but were not functioning.

It was the second scan a few hours later that enabled one of the other surgeons on his team to spot the darkening growing patch on my right side and I have to thank him for identifying that I had NF, the 6th case this hospital had ever seen. I was told that if I had waited for an ambulance and gone through the process of casualty because things develop so fast I may not have made it!

By now I had been moved to Intensive Care. ‘Sally is very ill‘ he explained . ‘Necrosis’ means death of a portion of tissue and ‘fascia’ is the name of fibrous tissues which enclose and connect the muscles. It is caused by a streptococcal infection which acts aggressively and very fast and starts in a wound or broken skin. There is a very high death rate. We have to operate as soon as possible to remove the affected tissue. This will be extensive and will need plastic surgery and skin grafting.

What was happening was unimaginably unreal and what was to transgress in the next months was just horrifying . The surgery which was done to save my life was abhorrent.

A third of the flesh of my torso was eventually removed and after just over three weeks in Intensive Care in Hillingdon hospital I was moved to the Regional Burns Unit at Mount Vernon Hospital in Northwood, fortunately where I live, where I spent the next 3 months. The plastic surgeon I was under modestly said ‘he only put me back together, the surgeons at Hillingdon saved your life!‘

The skilful nursing care, for I was totally helpless, together with that of the help and encouragement of the physiotherapists and occupational therapists was wonderful in spite of that fact that they had to work with outdated equipment, shortages, using unskilled staff, in unclean and drab wards.

I was discharged from the hospital under the care of the Hillingdon Rapid Response Team which eventually got me back miraculously to almost my old self again . Although left with horrendous and painful scars these are hidden under my clothes and I am now picking up the pieces where I left off just a year ago. In fact I am now starting on my second book, on my life :-

The Unluckiest, Luckiest Person ALIVE !

This was not the first time in my life I had overcome serious life threading illness, putting my family through trauma of almost unbearable magnitude. I now have faced and miraculously come through the experience three times, each time under quite unrelated circumstances. These left me classified one of this country’s chronically sick and disabled. In spite of this my life has continued, blossomed and been full of achievement and love. This is the story I will tell if a publisher would take it up!

I can be contacted by email at sally.fiber@blueyonder.co.uk.

steveSteve’s story

May 1998 a Saturday, I had just watched the Arsenal clinch the Premiership by beating Everton 4-0, I felt great dancing on the green outside my local pub, my friends have mentioned this as the last thing they remember about me before hearing that I was hospitalised.

That evening I went home and my partner Linda asked me if I would be able to take her to Heathrow airport on the Sunday morning as she was going home to see her family in Ireland, this, I told her was not a problem.

Linda woke me at approximately 07:00hrs and although I did not feel well, I put it down to all the celebrating the previous day and took her to the airport. I returned home and went back to bed with what I thought were flu like symptoms and a sore backside (I thought I had an abscess.)

Later that morning Linda telephoned to advise me that she had arrived safely, I remember telling her that I did not feel at all well, she advised me to go to the hospital, I refused this.

That evening a good friend of mine called round to find me still in bed he asked me what was wrong and remarked that I looked pale and grey, I asked him to go to the shops for me to buy some bottled water as I had a terrible thirst, when he returned he again remarked how bad I looked and advised me to go with him to the hospital, again I refused stating that a good nights sleep would do me the world of good and if I still felt bad in the morning I would go to the hospital.

I slept through Sunday Night, Monday day/night, Tuesday day/night and for whatever reason (and it still amazes me to this day) woke in the early hours of Wednesday morning, I immediately knew something was wrong, my bed clothes were soaking with a brownish substance that was oozing through my skin, my scrotum and penis had swollen at least 4 times normal size (I’ve heard all the jokes) and I was obviously in a lot of pain.

I remember having all my wits about me and got up had a shower and changed the bed covers, I then telephoned Northwick Park hospital (Harrow) A & E and asked them if they were busy, the lady asked me what was wrong, after advising her of my symptoms she advised me that I should attend ASAP and asked me if I required an ambulance, I declined this and said I would make my own way.

I put on a pair of shorts tee shirt and training shoes and phoned for a taxi which arrived after a couple of minutes, upon arrival at the A & E and booking in I was called to the triage room where a nurse was unable to get a blood pressure, she asked me to stay where I was and a trolley duly arrived and I was despatched to a side room where a doctor attended me, checked me over and put me on an IV drip and advised me that I was in shock, at this time I lost consciousness.

I remember waking a little later and speaking to two doctors who advised me that I was not well (no shit I thought) and urgent surgery was required, they then asked me to sign allowing them to operate which I had no hesitation in doing.

I remember being in a room with the doctors and laying on a bed, the doctor told me that he would count to three and I would go to sleep, he counted 1….2…I then remember one of the doctors pointing at my penis and saying gangrene, I then went to sleep.

I awoke two weeks later and remember a nurse talking to me I was obviously still half asleep and not knowing were I was, a little later a consultant came to my bed and spoke to me, I remember what he said to me very clearly “hello Steven, we have saved your penis and testicles but we have had to remove your scrotum and skin from your penis and due to the severity of the wounds you also have a colostomy bag fitted”, hold on I thought, “I’ve only got flu and a spot on my arse”.

My family, Linda and other friends have since told me that the doctors told them that I would not make the week-end after I was admitted and that I was minutes from complete renal failure and that if I had not come in when I did they would definitely not have been able to help me (what made me wake up?)

I spent the next week in the ITU at Northwick Park hospital when it was decided that I would be transferred to Mount Vernon Hospitals burns unit for wound care and plastic surgery.

I remained in the burns unit for four months and had skin grafts to my penis and my testicles were put into pockets in my thighs.

I was finally allowed home in August of 1998 and into the care of the district nurses.

Unfortunately I kept on getting infections and had to be readmitted to NPH on two further occasions, during these further visits I contracted the so called hospital bug MRSI. I was again sent home with half the hospitals pharmacy under my arm.

In February of 1999 I was readmitted to hospital and had the colostomy reversed successfully and after two weeks I was again allowed home.

After about a week of being home I noticed a swelling and redness around the area of the repaired stoma site. I attended the hospital and was advised that I had a para stomal hernia and was placed on the waiting list for it’s repair.

The repair was carried out in June 1999, the repair took eight (yes 8) hours due to it’s size.

Unfortunately the repair was not successful and the hernia returned and I was again put on the waiting list for repair.

Somewhat against doctors orders I decide to go back to work in April of 2000 as I felt I was going brain dead.

March 2002

I am currently convalescing at home after the repair of the massive hernia and a few nips and tucks.

I am taking things very carefully and I hope this is the final leg of the saga.

Although this was an horrific experience I could not have gotten through this without the kindness of my family, Linda’s family and all our friends.

Obviously I would like to say a special thank you to Linda who spent nearly as much time as me in hospital, thanks Linda, I love you.

I would also like to thank Consultant Chadwick at NPH and consultant Harrison at MVH and their teams, Christine and all the staff in the burns unit and everyone else who helped me come through this horrible illness.

Thanks also to my employers Rentokil Initial Security Limited, who kept my position open for me (I must be irreplaceable!!)

One other good thing that came out of this, is that while I was comatose the Arsenal beat Newcastle in the FA Cup final the following Saturday and clinched the double, go on you Gunners……

Thanks for listening to my inane drivel…

Steve Canwell

tonyTony’s story

This is Tony’s story…

My name is Carole and I was married to Tony for 26 years. Sadly, he is not alive to tell this story, and as I was not with him throughout this ordeal, I will attempt to do so to the best of my ability. As it happened far away, events may have differed without my knowing it.

Tony did furniture removals, often from England to France, where we have a house. On 3rd July 2008, he picked up a load from London, destined for Lyon to be delivered on Monday 7th July. He then travelled down with two loaders to Cannes to pick up a return load on Wednesday 9th July.

He sustained a cut on his right arm while loading in London, but this was quite common and did not give any cause for alarm, although I did notice it had happened. He caught the evening ferry from Newhaven to Dieppe on Friday 4th July.

On Saturday evening he rang from our house in France to say that he had been sick – but again no cause for alarm, possible food poisoning (or so he believed) from a French meal.

They all left on Sunday 8th July for Lyon and the unloading took place on Monday as planned. I believe the sickness was still taking place, which I now know is an early sign of NF. Apparently, he managed to work on this job, but was still plagued by nausea. By Tuesday, Tony was not well enough to drive the lorry and lay in the back, as it was now empty, whilst someone else drove. He still felt he had food poisoning, as the symptoms were the same with some dehydration and lowering of blood pressure.

The first I knew of any problem was when the client phoned to say the lorry had not arrived at the arranged time on Wednesday 9th July. When they got there, Tony got out of the lorry and collapsed. He was taken by ambulance to Grasse Hospital but as they had no intensive care unit, he had to be transferred to Cannes. At midnight, he suffered a heart attack as the toxins had invaded the body during the preceding days and his system closed down and he died. The post-mortem in England stated the cause of death to be systemic sepsis and necrotising fasciitis to the right forearm.

I obviously find it hard to accept that no attempt was made to check out his condition at any time during this journey – by any body – but men being men, they do not like to show any sign of weakness. He certainly did not think that he was so ill. If he had sought treatment would anyone have known the cause of his illness and even if they had, could he have been saved?

Sadly, these are questions that can never be answered, but I write this story, to tell the world that there is a bacteria – that those of us that are affected know about – that CAN kill in such a short space of time, if no treatment is sought, and in such a dreadful and aggressive way. The death of my husband is a case in kind.

Perhaps we can all learn from this tragedy – I do hope so.

vanessa3Vanessa’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

wrayeWraye’s story

Hello, my name is Wraye and I have been living and working on the European continent for almost 30 years. I now live in Bonn, Germany

I raised a family here and was always active in sport. I never had any major health issue until I was diagnosed – aged 50 -with breast cancer at the end of 2012. I was sent into surgery straight away and chemotherapy followed shortly after that. The first 3 rounds of FEC chemo went so well that I returned to work part-time. However, I suffered an unexpected toxic reaction to Doxetal chemo in March 2013, resulting in a severe skin reaction on my neck and back.

I was in treatment for this but the rest happened so fast. I developed a fever and excruciating pain in my right shoulder. This was a Friday evening so my daughter drove me to A&E where after many hours of tests an assistant doctor guessed at NF and sent me immediately into surgery. He probably saved my life.

I spent about 2 months in hospital, 3 weeks of that in intensive care, and underwent over 10 operations. I lost at least 30% of the skin and muscle on the right side of my back. The doctors tried to transplant muscle from my left side to the right but the transplant developed blot clots and partially died. This left me handicapped on both sides. After my release from hospital I needed daily nursing at home for a further 4 months. Since then I have been in physiotherapy for 2 hours a week to regain and maintain upper body mobility. NF is an utter rarity here so I have lost count of the number of doctors I have seen, half of them I suspect just wanted a look at my strange case.

I have since given my oncologist permission to use my case at a tumour conference to highlight the fact that NF can still be an issue in cancer treatment.

Since then I have been pensioned off but lead a simple life at home. The consequences of NF and constant pain are with me every day. I still grieve and fret over the heartbreak my children suffered during my illness but am also so grateful for their help and my friends during this time. Often, I could not cope without them. Bless them all and bless you my fellow sufferers.