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.
Sunday 17th I woke up feeling very ill I had sickness and diarrhoea constantly throughout the day. I ended up laying in my daughter’s bed as I couldn’t move, I felt so unwell and still had horrendous pain, which I could now feel in my breast. I rubbed excessive amounts of deep heat cream on the area thinking I had pulled a muscle. I spent the night being sick and hot with high temperatures and even laid in an empty bath as I needed to cool down.
Monday 18th I needed to see a doctor so I went to my GP regarding the pain and I was told I had pulled a muscle and when asked to extend my arm out I screamed in agony to be told ‘it can’t be that bad’ but referred me that day for an X-ray!!. I went for the x ray which was excruciating, It showed nothing was wrong with my bones.
I was still ill and in lots of pain that evening at 11pm I couldn’t cope any longer so we had our daughters Uncle sit with them while we travelled 20 miles to the out of hours doctors, where I was so ill I laid on the toilet floor!!! the doctor told me I had gastroenteritis!!!!!
If they had known what they were looking for I could have been spared the trauma to my body and the trauma I’m dealing with daily physically and mentally now.
So returning home at midnight I felt like I was dying!! Little did I know I was.
Tuesday the 19th I begged Chris to take me to Broomfield Hospital where I was seen fairly quickly. I don’t remember a great deal about the next few weeks, but I know I’m lucky to be here!
Chris was told I had a cyst and I would be taken to theatre to drain it. My symptoms didn’t however sit well with a doctor who had overheard these observations of me and arranged tests and Necrotising Fasciitis was quickly diagnosed. If he had not been there at that moment I wouldn’t be here!
I was then in theatre having debridement of 30% of my torso including my left breast.
I was in ITU for 6 days in a coma and then I was moved to the burns ITU for a further 9 days in the coma having surgery every day to take away more tissue. I was gradually woken up and all I can explain is that it felt like a living hell!
I had surgery every 2 days for the next 2 months, including dressing changes in surgery. I had a tracheostomy which was horrendous as it meant I couldn’t talk or eat or drink for over 2 months, the ventilation was really hard and learning to breath when my tracheostomy was capped off was horrendous for me.
I also had to learn to walk and move my arms and legs again as my muscle’s had wasted so much from the injury to my body. I had multiple organ failure and dialysis, which really takes it’s toll. I had to learn to even move my head, it really was the hardest time of my life. I was moved to burns rehab ward after 6 weeks in burns ITU where I had daily physio and still had to have dressing changes in surgery every 2 days.
I had my skin grafts done on the 12th April 2013 this was the most painful part of my recovery and I will never have another graft again!!!I was in the most horrendous pain the second I woke up in recovery and I was so hysterical Chris was called into the recovery room to help calm me down, even ketamine, morphine, tramadol, gabbapentin and paracetamol didn’t take my donor sight pain away, it was horrendous, both of my thighs were used for my skin graft.This kept me from doing any physio for a week, I went home 1 month after this with a donor sight that wouldn’t heal, the pain was immeasurable and thinking about it makes me feel ill.
During my time in hospital not seeing my children had to be the hardest part, I only saw them once a week and would cry at night just wanting to be at home. They missed out on me being at home for 3 months and I feel guilty about that. They saw me for the first time on Mother’s Day almost a month after I was admitted and it was heart breaking seeing them look so scared of me.
I still have hospital appointments at burns outpatients every 2 weeks now which has been a big deal as it was every 2 days once I was discharged on the 13th May 2013.
8 months later I’m almost healed now and I am approaching Consultant appointments, which will begin the next chapter which is reconstructive surgery.