No. 17 My NF story - all in one place/blog :-)

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.

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!

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 ;-)

SURVIVED ANOTHER DAY

Returning home was difficult. I was a burden on everyone. I just wanted to be able to look after my son by myself. I was angry, frustration and sheer pain took a massive toll and I hated what I had become. People had to deal with a lot. I was grieving over the mummy I was never going to be. The house was always filled with someone. My mum was my main carer to allow Graeme to return to work. District nurses were in and out, medical supplies were being delivered, District nurses from different teams around the country would visit so that they could learn first hand how 
to apply the VacPac Therapy and the pain never got any easier. Even the health visitor continued to make visits I guess she wanted to see that George was cared for amongst the madness! There was a routine and I was so much happier to be home but it highlighted to everyone just how different life was now.

At one point I had to go to A&E because my VacPac had stopped working. I was left all night with no one telling me what was going to happen. This is one of my worst flashbacks. I appreciate it must be hard to understand and its certainly difficult to explain. I think the word I need is dread? My other flashbacks are quite dreamy but this is stark and very real. Maybe it is a real, true memory? I am alone on a ward the likelihood of which is minimal. There is a deathly silence and no one is available to talk. I am waiting and waiting and waiting. George and my family are in my thoughts and I feel completely and utterly helpless. I’m in fear that the NF is going to creep back and here is where I’ll die, with no one at my side. All because there was no access to the medical supplies I needed. Indeed even with access no one there knew what to do with it! Thankfully, I survived another day! Dramatic I know! The Medical Rep for the VacPac Company had to travel from Leicester in order for the dressings to be changed. The system was apparently so new training for its use; settings etc. had not yet started.

I enjoyed opportunities to be out of the house. It took a lot of organization but it was so worth it. There was a hint of normality in going to have a slice of cake or buying nappies. I may not have been the independent mummy enjoying swimming sessions and baby music groups but to see that life continued outside of my four walls was great and being on my mobility scooter proved a highlight too. I certainly hadn’t lost my need for excitement and if breaking the ‘speed limit’ in a shopping centre was the only place to get my thrills then I was going to do it :-)

Jealous? Thought so!

Obviously I was never alone. Mum was with me on one occasion when George needed a bottle. We found a place to have some lunch and I shifted myself into a chair, leaving my VacPac and tubes resting over my mobility scooter, whilst mum sorted George’s bottle. The women on the table next to us decided that now would be the right time to have a conversation about how awful it was to bottle feed a baby. People have no idea!

Love this pic! In my Morphine world. My nurse had even tried to wash my hair in my bed for a rare visit from George. Doctors were obsessed with infection for some reason ;-) Anyway, BOTTLE FEEDING MY SON! Even looks like I'm holding him :-)

Back home the district nurses were great. They were obviously interested to be dealing
 with my case and to learn new skills. But they were also completely matter of fact towards me. I never felt like a freak around them. I flatly refused to look at my body when the VacPac wasn’t attached. A photo would be taken, as I could disassociate myself from it, and I would marvel as day by day this huge cavity in my body became smaller and smaller and smaller. I was on a lot of painkillers but when dressings were changed, I was given more morphine to try and help deal with the extra pain it caused. My mum, Graeme and anyone involved at these times will be able to tell you that a bucket load of painkillers and Morphine are no match for a dressing change. Imagine a huge plaster being stuck over your torso with superglue and being ripped off. Then the black foam that is packed inside the cavity gets removed whilst trying not to rip out any new growth that has been made. Grit and determination got me through, and of course wanting to prove the docs wrong again. 2 hours to live? Wrong! Hospitalized for 12 months? Wrong! Walking? Wrong! Never closing a cavity that size with VacPac Therapy? Wrong!

I was so proud that I closed on the VacPac but coming off it was actually quite scary
. I was so used to the sound of my machine, gunk flowing through my tubes and seeing my container fill more and more slowly. It was a bit like a security blanket. What would happen without it? Would I suddenly become the person I was before? What would life be like? Would I finally be able to shower without being wrapped in cling film first?

I do know from pictures that Christmas 2005 was finally celebrated. Our first family holiday was had in Scotland and I was able to look after George for short periods of time by myself. Even a house move was organized to be closer to mum and dad to make caring for George and me easier. Good job I like the house because I don’t remember choosing it!

These better days weren’t to last though. I was told I needed more surgery. I cried for days. I have no idea where my family found the strength to carry on through this horrendous time. It 
must have been the biggest slap in the face to them. Here I was, this huge burden for the past year, and now I was going to go and die and leave them to deal with the aftermath! I was ruining every thing for every one. I absolutely believed I was going to die. Part of me is ashamed of my defeatist attitude. But I had contracted NF during my C-section surgery and as far as I was concerned having to have more surgery was like being given the death penalty.

Before the surgery I wrote letters to George and my family to have once I’d gone and even organized my funeral. I still e-mail George now so if anything ever happened to me he’d know what his mummy was like. I even had a ‘Just in case I die’ get together.  Surgery was scheduled for the New Year. Christmas had already been spoilt for everyone the previous year. I wanted to ensure that I would be included in at least one lot of happy Christmas photos for George to look back on.

When the day came I was absolutely petrified. I had no abdominal muscles and I would need this surgery for them to insert a mesh that would keep my vital internal organs in place. I refused to be wheeled down to theatre, as I wanted to walk. Stubborn to the end ;-) Looking back I should have been more demanding. I reckon I’d have gotten away with a lot!

Obviously, the surgery was successful although there was an issue with antibiotics. I’m allergic to antibiotics. I know – not very helpful is it? Anyway, microbiologists found something to pump through me whilst I was battling NF. It was logical to use the same now but it seemed my body had other ideas. Graeme was relieved to have seen me out of surgery and awake. He had gone home to see George and change before returning only to find me non- responsive. Seriously!?! I got through NF, a zillion surgeries and now antibiotics were going to be my downfall! Not bloody likely! Once home recovery was frustrating and my life was a haze of pain and drugs. I just wanted to live a normal life but this was far from normal.

LIVING WITH BEING ALIVE

So what was life like once I had healed? Was everything a bed of roses? Did we look 
back and laugh at how I had stared death in the face? Did I embrace life like never before? Sadly not. Life was hard. Necrotising Fasciitis is its own hell but living with being alive has been quite another. For me personally, I suddenly had to deal with body image issues. The last time I had any body issue was at school – I was the last one in my year to have anything to put in a bra! Due to the NF and surgeries I now have a step in my body. I began hiding my body from my husband. I refused to believe he could ever love me looking this way. Once I spent a whole weekend abroad with a huge group of people I knew. I was drunk most of the time (more of this later), in tears privately with Graeme, at the thought of being in a swimsuit! Graeme has had to deal with my latest battle of wearing lycra for my training which obviously shows everything I have and haven’t got!

Both of us have had to get used to the fact George will be an only child. I made no secret that I absolutely loved being pregnant. The pain of not giving Graeme a daughter, of not allowing George a brother or sister, of never being pregnant again, has at times been unbearable.

I was full of resentment, even (shamefully) hatred for anyone who was living life as I wanted. A lot of this was directly linked to living in pain. Being in pain makes you a moody, unhappy, horrible person to be around. I was on an awful lot of painkillers to get me through my day and I got to the stage where my life was so far from reality I scared myself. I was at my lowest low, with no control over my life and genuinely believed that everyone’s lives would be far better if I had died. There was more than one occasion that Graeme found me collapsed in a heap contemplating not being around anymore.

Eventually I hit rock bottom and I absolutely had to take control if I ever wanted to get back on track. I truly believed that coming off the drugs was the best thing for me to do so I started 
to wean myself off them. It took a while and I was in even more pain but I began to see things a little more clearly – for a while.

I was officially discharged in March 2008. Plastic surgeons still wanted to get their hands on me but I absolutely can’t put family or myself through any unnecessary surgery. It’s always in the back of my mind that this mesh insertion from my last surgery might not last forever. That is scary enough! I was still on painkillers but an amount that I was happy with preferring to be in pain and functioning than an outright Zombie like before. I would tell Graeme “I’m better now” then a week later “I thought I was better, but now I really am better”. This went on and on just like the pain.

Taking a break from the pain came in the form of drink fuelled nights out. The alcohol numbed the pain, and weekend drinking soon turned into every night drinking, and 1 bottle of wine a night drinking turned into 2 bottles a night drinking. I was making trips to the recycling centre so no one could see how bad the situation was and knew all along the self-medicating would have to stop at some point. It came when I realized there might come a time when I wanted to drink when I woke up.

Yet again it was time to battle and thankfully I sorted myself out.

It’s amazing what you can do when you’re a mum. George helps to put everything into perspective. That stubbornness of mine really helps too. I still drink on nights out. I want to wear heels, dance, be a little crazy and there is no way I could without alcohol or painkillers. Loads of day-to-day things 
test my pain threshold. Washing/drying my hair, driving a car, crossing my legs, walking up and down stairs, sitting down, standing up, pulling on boots, opening jars, getting out of bed, the list is endless. I have changed how I do a lot of things it’s like my centre of gravity has shifted. I 
certainly never realized how much you used stomach muscles for! I have good days and bad days but I hope I have learnt to cope with my daily pain in a far better way now. To be honest, I’m not entirely sure I can remember ‘normal’ life before NF. What it was like to have feeling across my stomach, or having a proper belly button in the right place or not having a step cut out of me. Maybe its good that I don’t? Maybe my brain is doing me more favours than I know?

So what of life now? I am a little crazy. I come up with crazy ideas and my poor family
 doesn’t really have a choice but to support me. I absolutely refuse to let NF win. My pain is a constant reminder but NF has bought many positives. I survived. I would never be doing these crazy things if it wasn’t for NF and I wouldn’t see life how I see it now. I take every day as it comes. Not only because my memory is so bad but because tomorrow may never come. Death scares me, but not living the life I have left scares me more.

Pushing my limits :-)

Thanks for reading xxx