No.11 Necrotising Fasciitis-PART ONE-I Hate Hospitals

So, this is the blog I’ve been putting off for a long time. I’ve been told several times to add my ‘story’ so people know exactly why I am doing what I’m doing.

Riding 1000 miles from John O’Groats to Lands End was chosen to push myself beyond my limits. I never thought I would be doing something like this and, together with my Husband Graeme; we have no idea whether or not my body will be able to cope with it. But we will absolutely give our all.

I actually tell the story (or versions of it) quite often. People ask, or I feel I have to explain a situation like my lack of memory! Obviously I get to raise awareness of Necrotising Fasciitis and to be completely honest it is great therapy. However, writing about it has proved difficult. I can’t see the reaction of the reader so can’t tell a ‘lighter’ version if needed and trying to piece together all my second, third and forth-hand ‘memories’ has been a challenge in itself.

I have written down the story before for other fundraising events but always been told it’s too lighthearted. I’m not sure how this one will end up so I apologise in advance if it is upsetting to anyone. To those reading who are already ‘in the know’ I hope it helps you remember that I have good reason to do the crazy things I do! If our fundraising madness helps to stop just one family going through what we have it will have been worth every fallen tear.

You can visit www.nfsuk.org.uk to find out more about Necrotising Fasciitis and the amazing work of The Lee Spark NF Foundation. Here goes...

Before having my son George I was a definite planner. I would probably be able to tell you exactly what I’d be doing months in advance. I loved organizing and I guess I loved being in control. Obviously you can’t plan when you’re going to give birth and I can remember trying hard not to let that stress me out and become a bit more chilled! Oh how things have changed J

After 40 hours of labour I was whisked to theatre for a C-section as George was getting stressed and I simply wasn’t progressing any further. I can remember that the epidural didn’t work properly and I could feel them cutting me open on one side. At the time I thought the pain was horrendous and still find it amusing that I demanded to be knocked out when they only had a couple of stitches left to do! Little did I know that compared to the pain of NF, having my stomach cut open without anaesthetic was nothing.

I spent the next few days trying to get on with being a mum showing that I was more than capable so I could get out asap. I hate hospitals and just wanted to be home and start being a proper family. George was an amazing baby – just mesmerizing. I was in awe that someone like me could be partly responsible for making him. In hospital I had a ‘blush’ all over my tummy a bit like heat rash and a small bruise starting to show. I was in pain but having never had an operation, let alone major surgery of a C-section, I had no idea there was an issue. The doctor checked these out and was more than happy to discharge me. Interestingly (to any medics reading) we were also told that they had found Strep B on George but again there was nothing to be concerned about. We eventually found out that the blush and bruise were signs of infection. I was back in hospital 15 hours later.

Proud mummy before NF kicked in.

Graeme, my husband, called the hospital as I had literally burst open. He was given the ‘you’re a new parent, stop worrying, it happens often, your health visitor will be there soon’ speech. When she arrived Graeme was told to get me to hospital straight away don’t bother to wait for an ambulance. I’m guessing she had never seen a C-section like mine before.

I have to tell my story second hand as I have very few memories/flashbacks of the first year after George was born. So you’ll have to bear with me if it’s disjointed. The majority of NF survivors have memory issues. It’s one of the many long lasting affects it leaves. It’s something I struggle with a lot. Over the years Graeme and I have had full on debates over conversations that I genuinely can’t recall. Embarrassment over memory issues in my thirties always brings out severe stubbornness – never good! Sorry Graeme! On with the story…

I was back on the maternity ward and no one had a clue what to do or what was wrong. I was put in a side room whilst my family was desperately trying to find out what was happening to me. I was dying in that room. I am typing with tears in my eyes as I think about what could have been. Miraculously a consultant walking past came in to see if he could help, he took one look at me and had me rushed straight to another hospital and into surgery. I have a vague memory of the trip in the ambulance, a man saying my name over and over and some handles on the roof??? I don’t think I ever answered him.

Graeme had to sign the paperwork to allow surgeons to try and save me but he should prepare for the worst - it was unlikely I’d survive the next couple of hours. I genuinely can’t begin to imagine what he went through becoming a new dad and now a high possibility that he’d be a widower too. My Mum and Dad with their first grandson and now they may lose their daughter. Tough cookies!

Amazingly I made it through that first op. It was the first of many operations to come. The consultant explained to Graeme and my family that I had Necrotising Fasciitis. The disease had taken such a hold I would need several operations to ensure that they removed all the dead fascia and muscle and stopped it spreading further. Night after night Graeme and my Dad would come and see me into theatre and stay until the op was over. Day after day I would be in the care of highly specialized nurses, in a High Dependency Unit. I have a flashback of HDU. I can recall specific noises. Morse code like beeps in slow motion, otherwise the place is quiet. I’m in a paralysed state but my eyes actually open and its then I realize I’m not alone. Other people are in beds too. I can only see one of them but I can tell they are all dying and I am wondering what the hell am I doing in here.

My operations involved removing dead flesh and saving my vital organs. My torso was left open in between my operations. The surgeons have to be completely satisfied that they have removed every bit of the Necrotising Fasciitis before they start the process of closing the wound created. NF can destroy muscle, bone and create a need for amputation. I am extremely grateful that amputation wasn’t an issue and that they managed to save my bowel and bladder which were the organs giving them the most concern. I wasn’t so lucky with my abdominal muscles but you can’t win ‘em all! I can actually recall ‘seeing’ myself being operated on and how the theatre was laid out and where people stood – the mind is a weird and powerful thing. NF causes excruciating pain, confusion, high fever, dangerously low blood pressure, severe dehydration and can cause the rest of the body’s organs to go into shock resulting in respiratory, heart and renal failure. Basically every system of the body can fail. Bearing this in mind I did ok J

Through the surgeries there were times when I needed transfusions. Additional worry for my family as the hospital tried to ensure they had enough blood for me. Low blood supply was certainly never something I thought of before being ill. Donating is one of the few things that I wish I had done in my life. The thought of someone dying because of a lack of blood donations is heart breaking. Luckily, I know some lovely people who give blood on my behalf and I am extremely grateful to them.

After one of my surgeries is when I have another flashback. According to my Dad’s diary, family got told I’d be moved to a private room (no more HDU) after the surgery. I remember waking up in a white walled room on a trolley and complete silence. This wasn’t HDU? I was screaming for someone to come to me over and over and over but no one came. I remember thinking shit I’ve died. I’ve bloody died and I’m stuck on a hospital trolley. I’ve seen photos that show my private room and it’s not the one from my flashback. Weird mind. It gets weirder.

In the precious first few days of George’s life I had breastfed. It wasn’t something that I had set my heart on. But he knew exactly what to do which certainly made things easy for me. Anyway, I must have enjoyed it as when I was out of HDU, still with more surgeries to go, I asked to express my milk. Even though we’d initially been told I would be in hospital for a very long time, I had this mad idea that I would express so that when I got home to George I would still be able to breast feed him!!! Bloody idiot! Feel I should say at this point that I was on self-administered Morphine amongst other things to deal with my pain. I wasn’t my normal self for a long time.

The photo I bonded with.

A powerful breast pump found its way to my room and every day I would look at the picture of George I had at the side of my bed and express. Due to all the drugs I was on, my milk was no use to George and it would be thrown away. Upsetting but it must have given me focus and time to bond with George albeit a picture of him. Someone once (very helpfully!) told me that because I hadn’t been around for him as a baby, I would never bond with George. Maybe this is what helped?

Another memory was a nurse who would visit to help me when I wanted to express my milk. She would tell me that even though she had never had her own child she had the ability to produce milk. She would often go to the babies whose mothers had died or couldn’t be with them to feed. I remember her clearly she is like a character from a horror film to me. She was so sweet outwardly but I was convinced she would take my son away from me and be a better mummy to him than I could ever be. Graeme insists there was never a nurse like this. I know logically that she must be a hallucination caused by the amount of morphine and anaesthetics in my body. But there is still that part of my brain that thinks she could be real though! Told you it got weirder!

Once the surgical team was happy that they had removed all signs of NF it was time to think about how to close me up. As most of my lower torso was missing it was decided that I would return to surgery to be fitted with VacPac Therapy. An amazing piece of kit that would promote wound healing through granulation tissue formation. If it worked (the doctors were very skeptical) in 6 months I would no longer have a huge cavity in the middle of my body!

To explain VacPac to you makes it sound like something off Blue Peter. First the cavity would be filled with Black foam then sticky backed plastic was placed over the top and a tube attached to a pump would be placed in the centre. This pump would be turned on and the whole area would be suctioned. The science behind it is truly amazing. Put simply it would use negative pressure to stretch cells, promote new tissue formulation and best of all remove anything infectious for advanced wound healing. The VacPac Therapy unit was huge and whilst I was attached to this there was no way I’d be going home.

A representative, from the company supplying the VacPac, pushed hard for me to be connected to a ‘portable’ version in order to allow me to be home. There were times when we thought it would never happen. I was going to be a huge expense and there was a battle over who would pay for it. I just couldn’t believe I was going to be home. It was going to be so hard, a massive responsibility for my family; I needed such a lot of care. The cost battle carried on for a few weeks after I was home before amazingly the hospital picked up the bill. I became obsessed with learning to walk again once the VacPac was in place. I pushed all my pain barriers to their limits in the time it took to organize all the resources to be put in place for me to be home. Nurses would find me collapsed around my room as I obviously thought I was way to young for my Zimmer frame ;-)

CLICK THE LINK BELOW TO READ PART TWO
No.12 Necrotising Fasciitis-PART TWO-Survived Another Day