Looking back, feeling grateful and looking like a bloody octopus!

I’ve just come back from a successful driving lesson. I’ve had a few lessons now, and each time I feel like I’m getting even better at driving.

I’m really enjoying it!

My life recently, despite having highs and lows (as anyone’s life does) has been pretty “normal” – as ive previously mentioned.

This time about 6/7 years ago, I was extremely weak and poorly. No one knew what the future held for me.

I questioned whether I’d ever have a life. I didn’t know whether I’d ever learn to drive. Whether I’d ever get into a relationship. Whether I’d ever be able to work. And I know this was a horrible thought to think.. But I questioned whether I’d make it to my 16th birthday.

It was a horrible time with a lot going on. No one knew what the outcome would be. It was touch and go. We had to take risks and fortunately I was very lucky.

Look at me now, 22, learning to drive, in a relationship, working.

Im very fortunate to be living the life I’m living now. The outcome could have been a whole lot worse.

I think that what I’ve been through has also made me grateful for the smaller things in life. Any milestone I reach or any baby step I take.. In anything I do, I’m proud of!

Some people might think I’m a bit too enthusiastic about the smallest of things sometimes but I can’t help it.

Somedays I’m thankful that I’m still here, living😂

Even back then, I was grateful for the smallest things. Things some people might take for granted.

Here is a Facebook status/photo I posted in December 2012…

I was estactic about having the tube taken out of my nose! I was grateful for not having something so ugly and uncomfortable taken away – just in time for christmas! I finally looked normal!

(however it wasn’t out for long as the following January, I had my surgery and throughout the year of 2013, I had many tubes in and out of me… I looked like a bloody octopus at one point!😂😂🐙)

I am normal… In my own way

It’s hard to say whether I can accept what I’ve been through or not. The majority of the time I feel like I can but sometimes I ask myself;

Did I actually go through all that?

The question I find myself asking many times. Did I actually go through that period in my life where I basically lived in hospital? Did I actually have major surgery? Was I actually that weak and poorly?

The answer to all that is yes. I did/was. It sometimes all feels like a distant memory, or even a bad dream though.

Saying that, my situation now where I have scars, my stomach is distorted and I have a tube, seems pretty normal to me.

I can kind of understand how someone else could look at my situation and think that it must be hard and scary. I mean, being connected up to a machine that pumps feed into you can seem quite daunting. I remember when I got told I will have to have a tube into my stomach – I was petrified!! Yes, I still had a slightly odd looking stomach with scars from baby surgery and no belly button but I was used to that. I was born with it after all😂. But the thought of having a tube just sitting in/on my stomach. Visable for me to see. And a machine that would pump stuff into me… I doubted whether I’d be able to get used to it.

Some people may not consider me, or my situation, to be “normal”. And that’s okay.

Why?

Because I know I am normal in my own way. I have grown used to having a tube in my stomach. I have grown used to having a slightly odd stomach. I have grown used to being fed by a machine overnight.

I am also used to the fact that my appetite is not great.

But I suppose the question I should be asking is….

What is normal?

(Btw this is my 50th post! Wow!)

😁😊

My Experience of Stomach Surgery (part 4)..

After a few days of being in intensive care and special care i was moved back to the normal ward.

Princess Elizabeth Ward is what it was called. It was a second home to me back then – which isn’t the most ideal I know😂 but despite the circumstances, I felt happy, safe and welcomed there. The cleaners, the nurses, the doctors, everyone on that ward were amazing.

Anyway, when I got on to PE ward, I was still a little dazed and sore from the surgery but I was getting there. I didn’t feel any pain for the first couple of days but that’s because I had an epidural. Before my surgery I used to think only pregnant women had epidurals and didn’t quite know what it was😂

However prior to surgery I was given an explanation as to what an epidural was. In my own words, an epidural is basically a form of pain relief. It’s a tube that runs down the spine that injects a form of pain relief into your body. It basically numbs most of the body and reduces the pain that you could be feeling massively.

I didn’t quite realise how effective an epidural could be until I had one.

I had one put in during my surgery and had it kept in all the way until I got to PE ward and was properly starting to recover and get back to normal.

When it first came out, I still felt no pain whatsoever. I had no feeling at all within my body actually. Within a day or two of it being taken out though…. I started to realise how powerful that drug was.

The pain was horrendous. I wouldn’t wish it upon anyone. I have the odd pains and aches now but I have never had pain like that. However it’s not surprising, considering I had just had major surgery where my stomach had been sliced open. (sorry for the graphic image there😬😂)

By this point, because I started getting feeling all over my body again, I also had my catheter taken out (a thing that lets you go loo without getting out of bed or even moving – sorry again😬😂).

I then started to have physio and would start by working on slowly sitting up and sitting on the edge of the bed. It felt like a work out!

Thinking about it, I find it fascinating to think that once, even sitting up in bed exhausted me. Now, I still get tired and exhausted probably a bit easier than a “normal” person but I can do a lot more!

After days, maybe a week and a bit, I was walking around the ward with my triage (they called me lady penelope at the hospital as for a short while I had to have people with me when I went for a wander round the ward or hospital – my dad and a nurse or two, as well as the machines I was connected to!😂)

I made such good progress in such a short amount of time (I think it was just because I was soo determined to get back to normality that I really pushed myself!). After about 2 weeks of being an inpatient, I was sent home. Everyone was so impressed with my progress that they felt that I could go home. I remember asking my consultant when I could go back to school and he replied “give it at least a week”. I was gutted, I wanted to go back the next day! 😂😂

I was so happy to get home, recover and have a “normal” life. Me and dad surprised my mum and brother by turning up at the house without telling them I was coming home. It was so nice to get into my own bed!

Unfortunately though, it wasnt long before myself and my family realised that maybe all was not as it seems and I probably came home sooner than I was supposed to..

My Experience of Stomach Surgery (part 3)

Following on from part 2…

So after a couple of days in intensive care I was moved to Special Care.

This is a step down from intensive care, and only one step away from being on a normal ward.

I don’t particularly remember much from special care.. Much like intensive care.

I vaguely remember being in a room to my self, as well as on a ward during my time in that unit.

I remember that I had a doctor come into my room/bay everyday asking me what colour the walls were.

This was because I was still on a lot of medication to manage pain and stop me from moving too much as the scars were still very raw. The drugs were slowly wearing off though, and they knew this from me telling them what colour the walls were. The less blue/green (I think) the were and the more normal my vision was becoming, the closer I was to the drugs wearing off completely.

During this time, I also remember a story that I think I’ve told many times before – the time I hallucination I had of my dad being a women! That was so strange! 😂

I had many odd hallucinations during this time. I saw strange things and was pretty disoriented. I didn’t feel any pain and felt quite light and happy but I still wasn’t myself. Apparently I sweared at my dad and told him to do one a few times. Those who know me know that is unlike me.

I also once thought my dad was having an affair with a nurse! I used to growl and give this nurse dirty looks whenever she came to check up on me – obviously there was no affair! 😂😂

I believe I was only here for a few days before being moved to a normal ward… When things started to really move and I was closer to normality!

I can do this… I need to

That’s what I keep telling myself anyway.

I’m currently on the train, going up to Kings College Hospital – a hospital I know pretty well🙈😂

I’m on my way to an emergency appointment.

Since I’ve been an adult and have moved to adult care, I have never had to have an emergency appointment with my consultant. Which is a good thing. It just shows I’ve been well enough and able to look after myself without the need of medical intervention.

However recently, well the last few months actually, I’ve been noticing a few things.

A few people close to me know that I am pretty much always in some sort of pain or discomfort. I also suffer with a lot of sickness. But for the last few years they have been manageable. I’ve been able to cope most of the time.

Recently though, I’ve been struggling. Ive been trying to not admit it. I’ve been trying to push through and keep going as I always have. But it’s becoming too much now.

The pain. The discomfort. The sickness. It’s all too frequent and becoming quite powerful. It’s starting to interfere with my “normal” life despite my best efforts to hide it. People around me are noticing changes in me too, particularly my behaviour. It’s becoming quite clear that I am struggling.

Last week I gave in and phoned up my consultants secretary. I asked if I could see my consultant ASAP.

Luckily there was availability today.

So currently, I am on my way.

I’m going to tell her everything and not sugar coat things saying “I’m not too bad” etc. As I have a habit of doing…

I am pretty certain she’s going to recommend some tests.

Although, I’ll be happy something is being done about this, I am also nervous as these tests could also intefere with my “normal” life.

I am also worried that, if they found the problem that is causing me this grief, the treatment that they may be able to offer me could send me backwards.

It probably won’t but I’m so scared of going backwards with my health. I’ve worked so hard to get to where I am now both physically and mentally! What if this pushes me backwards? What if I become more ill? What if I end up being admitted into hospital on a long-term basis again? What if I end up driving those I love away from me due to my poor health?

I’m so comfortable with living a normal life now. I don’t want to disrupt it… But like a lot of people have said to me…. I need to listen to my body. And I need to put my health first!

K x

My Experience of Stomach Surgery (Part 1)

It’s just hit me. I’ve basically told you the basics of my story on this blog. What I’ve had done, my condition etc.

But I haven’t fully gone through my experience of having surgery… Especially major surgery.

So here I go.. I hope in some way this may help someone going through similar HOWEVER I must say, every patients’ surgery of any kind is different. In my story there may be some hard to read parts as well as positive parts… But that is just my experience. Like I say… It is very important that anyone reading this understands that EVERY surgery is DIFFERENT!

Okay now I’ve put out my disclaimer, back to my surgery story…

I’m not going to talk about my surgeries as a baby as quite frankly.. I can’t remember any of them😂

So I’m going to start with my first major surgery as a 15 year old girl.

At the age of 15 most teenage girls should be preparing for her GCSEs, going out with friends.. Just being a teenager. Unfortunately I didn’t have that experience.

My first surgery as a 15 year old wasn’t major (I was just put to sleep, had a camera put down my throat to examine my insides, and had a picc line inserted) but it was still a little scary. I mean, I was putting my life in someone else’s hands for a few hours!

But all went well. Time went super quick! (I was asleep for most of it so🤷‍♀️😂)

Now… Fast forward a few months after that procedure. My (unofficial) first major surgery. This is the one where I had my organs moved around and I was in theatre for over 10 hours!

Let me start at the very beginning of that day..

6:30am (roughly) : I woke up in my room at the hospital. I didn’t have a great night.. The thought of what was to come imbedded in my mind.

I didn’t know what to do so I just stared at the wall in front of me.. Thousands of thoughts going around in my mind. I heard the night shift nurses quietly having a chat. I heard alarms going off in the distance. I heard my dad snoring away.. Haha.

As I was focusing on all the sounds around me, my nurse popped in to do a few observations. Blood pressure, temperature, that sort of thing. We had a chat, a giggle about dad snoring etc.. I then asked her what time I’m due to go down to theatre. She told me it was still 7am.. As decided the day before.

Once she’d finished my obs she left.. And by this point my dad had woken up. One member of my surgeons team and the anaesthetist came to see me to have a chat and have me and my dad sign a consent form.

As the minutes got closer and closer to 7am… My nerves began to kick in. I felt sick. I was scared. I didn’t want to go through with it but at the same time I knew I had to otherwise I could put myself in danger if I didn’t.

It got to 7am and I hadn’t been summoned.. There must have been a delay or something. I had my gown on and was ready to go. Eventually.. at around 7:15am, my nurse knocked at my door, opened it and said those words that I’d been silently dreading.. “they’re ready for you now”.

After I heard those words, something clicked and everything suddenly felt super real. I felt a wave of nausea and rushed out of my bed, to the nearest outlet that I could be sick in.. The sink in my room. (Sorry for the grossiness)

I burst into tears and started shaking. I knew this was all just nerves, and so did my dad and the nurses. I had to let it ride. I just wanted to stop time there and then, either that or fast forward time to ignore this stage.

I got back into bed once I’d calmed down a bit. I did a few breathing exercises as the porter unclamped my bed and began wheeling me out of my room and down the ward corridor. The rest of the nurses and doctors on shift were at the nurses station all waving me off and saying “good luck” and “you’ll be fine!”. My dad and nurse walked next to me. My dad making bad jokes to try and lighten the situation… As he always does.

We got into the lift and went down to the ground floor. Because it was quite early there was hardly anyone around. It was pretty much silent as I was wheeled towards the surgery department. Once I’d been put in my bay… There was a bit of a waiting period. I had to have checks done again. Asked various questions. Checked my id bracelet. All that Jazz. Dad had to put a gown, hat and special shoe covers on as he was coming into theatre with me (he looked hilarious! 😂)

The time we were in that bay felt really long! Like it felt like it dragged. Eventually though, they were ready for me. No turning back now.

They wheeled me into the theatre. There was a lot of surgeons in there. I think there were specialists for nearly every part of my body (especially my digestive organs). I moved from my hospital bed to the operating table. I felt like crying again and looked at dad. He held my hand and tried to put on a brave face for me but I could tell he was just as scared. The surgeons fitted me up with all the needed equipment, gave me a foil, warm blanket to keep my body temperature stable. They then run through the questions and checks (again! 😂)

The anaesthetist then looked over me and asked if I was ready. I nodded and gripped onto my “lucky” Teddy (I brought him down for luck😅)

Dad was still gripping my hand as a mask was put over my face. The gas smelt and tasted of pear drops. I took their instructions of breathing in… And breathing out… In…. And out… In…. And out.

I started to feel dizzy. The room was spinning. My dad and the surgeons were talking to me but they sounded so distant and echoey. I also had ringing in my ears. I was feeling sleepy… And then suddenly… All was black.

Next thing I know I’m in intensive care….

Stay tuned for part 2☺️

Being known for something different

Before I start I just want to apologise for my last post being quite gloomy. When I’m not well I tend to feel a bit more negative than usual despite my best efforts to stay positive.

Back to this blog post.

I’d you know me, you probably know that I am a massive fan of a certain band… Queen.

I’ve been a big fan for, I would say around 5 years now. I knew of Queen before… Who doesn’t know of Queen?! But I properly became a fan in 2014 after getting a sudden interest in their music and their story as a band.

Anyway… Instead of rambling on about the greatest band that ever lived…. (I won’t be able to stop.. believe me😂) Let me get to the point of this blog post.

Recently, a friend tagged me in a Freddie Mercury related post on Facebook. I get a lot of notifications from friends and family tagging me in all things Queen-related. So much so that I feel that the people I know, now know me as Katie – the big Queen fan and not Katie – the girl who has spent a lot of time in hospital, or Katie – the girl who was born with her organs on the outside of her body, or Katie- the girl with a disability.

I’ve noticed that a lot recently. People know me more for my ‘obsession’. (I say I’m not obsessed but apparently I am🤷‍♀️🤷‍♀️😂) with Queen. Not for my past or present.

And I’m not going to lie… I love it! Because it gives me more of a reason to feel ‘normal’! I’m at the stage now where despite being proud of what I’ve achieved and overcome, I’m much happier being referred to as an enthusiastic (I prefer that term😉) fan of an incredible band, rather than a poor, sick girl who has had numerous operations. I don’t like people feeling sorry for me. I’ve had to deal with horrible stuff yes, but everyone goes though their own horrible experiences, all different in their own way.

Come to think of it, why do we sometimes focus on what people have had to go through and know them as that? Why not focus just on how well they have over come it? The positives. Admire their strength, don’t feel sorry for what they’ve been through.

That’s personally the way I think we should look at others.

(this is a photo of me getting ready for my first Queen and Adam Lambert concert last year! 😁🤘)

It’s been a year??! 😱

A year ago today I made the decision to start a blog about my journey. Covering the highs and lows of it all and spreading awareness of Exomphalos, Dextrocardia, Depression, Anxiety and many other aspects of my life.

I can’t believe it’s been a year already!

Thank you to all my followers. Those who follow on here, word press, or on social media (you know who you are😉)

Thank you for all your interactions and support – it means alot!

I do try and upload when I can but sometimes there can be quite the delay in posting so I apologise for that.

Please do continue liking, following and sharing though! I’ve got some new, great content planned for this blog so stay tuned😊

I want to try and get my story across to as many people as possible! Hopefully I can help and assure others who are going through similar whether physically or mentally.

So please, if you read this, like and share this post!

Thank you again! And Happy 1 year to Katie’s Journey! 🥳😁

Katie x

Going back in time… Kinda

On Monday I had an outpatients appointment up at King’s. It was a normal, routine appointment that I now have annually.

This appointment was slightly different to previous years.. Mainly because I didn’t have my parents with me this time.

I didn’t go on my own though, I mean I could have done. And I did think about doing that. I know the route and routine of it all. I’m fine doing it all on my own. I’m 22 for God’s sake, and it’s not like I’ve not been there before (I’ve had like almost 7 years experience😂)

But I didn’t. I took my boyfriend with me this time. And I’m pleased I did, as even though I said I could do it on my own, it was nice to have some company ☺️

The journey was fine, we went on the train. We ended up getting to King’s just over an hour before my appointment as per. (I’ve always allowed extra time to travel there because of delays)

So we grabbed a quick drink and sat and chat for a bit. Then, because we still had a bit of time left I decided to go up to the ward I was on 6 or so years ago. The ward that played a massive part in my recovery. I wanted to see wether the staff who were there when I was there, were still there. I wanted to say hello. I knew it was unlikely that I would see a few staff, if anyone, but I wanted to try.

So we went up to the third floor (the floor in which my ward was on).. In the lift I felt all these memories flooding back. I remembered how many times I had used that exact lift, wether by walking, in a wheelchair or even in a bed.

The lift got to my floor, I walked out.. And forgot what way I needed to turn to get to the ward. I couldn’t remember wether it was right or left😂😂.

I quickly remembered though and turned left, making my way towards the ward. We buzzed in, used the hand gel they provided at the entrance and walked towards the front desk. The ladies at the desk I did not recognise and they did not know who I was. They asked “can I help you” and I explained that I used to be a patient in this ward and I’ve come to say hello.

They were lovely and chatted to me, whilst explaining that a lot of the staff who were around when I was there had moved on elsewhere. However there was one nurse there, who I hadn’t seen since probably 2014. The ladies called him and gestured over towards me. He looked at me a tad confused. But when I said my name he was like “omg Katie!!”😂 He asked me how I was, what I was doing now. He also pointed out the letter from the Queen I sent them (I’m not sure if I’ve mentioned that on here yet.. But I’ll probably reminise about it soon anyway!) After a bit of chatting, I had to go as it was getting closer to my appointment. I said my goodbyes and the nurse told me that he will mention that I came in to the others😁

Once I’d left the ward, I felt so happy. A little gutted that I hadn’t seen many people but I’m glad I got the chance to see one, and he will let the others know that I came in☺️

My appointment itself went okay. I didn’t see my actual consultant, but I saw her registrar. She was lovely.

I talked to her about the size and shape of my stomach and asked if I could have physio or something to help bring it in but she said that because of the way my stomach muscles are shaped and placed, physio wouldn’t do anything. I can try basic stomach exercises. But that’s it really. She also said that my stomach could increase in size in the future but there’s nothing I can really so about it. I’m okay with that at the moment, but obviously in the future if it start affecting me physically or mentally then I might have to consider other options if there are any.

She also suggested that I could be discharged if I wanted to be. As there’s nothing more that they can do for me and I am in a stable condition now. I said no. Mainly because I know, god forbid I was to relapse or just suddenly get extremely unwell, instead of going to the GP or A&E – who won’t know about my condition – I can call my consultants secretary up and get an appointment, or admitted to a ward at Kings ASAP. I’d rather have that back up if needed. After all, I am a complex case.

I guess it’s a good thing that I have the option to be discharged from the hospital after all these years as it shows I’m now stable and in a good place. Although, the other option is to stay put. Even if it means seeing my consultant once a year. I’d rather that than have trouble seeing someone who knows what they’re talking about in an emergency. Staying as a patient is one thing I am entitled to which I will accept. I think it’s the safer option. I’m happy where I am.