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 experience๐Ÿ˜‚)

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 โ˜บ๏ธ

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 left๐Ÿ˜‚๐Ÿ˜‚.

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!!”๐Ÿ˜‚ 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 others๐Ÿ˜

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 inโ˜บ๏ธ

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.

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My appendix got stolen!

Well…. Thats the way me and my family see it anyway haha!

Let me explain..

Around this time 6 years ago I was in and out of Kings having surgery and different procedures. Obviously at the time we were just focusing on what was happening and making sure I recovered. I knew I was having my organs moved and I knew that I was having a stomach wrap to shrink my stomach. But I didn’t think any organs were going to be taken out.

Anway fast forward a few years, where I’m stable and starting to be able to live a normal life… I was living my life focusing on the recovery when… I found out that apparently I didn’t have my appendix anymore!

Obviously it’s nothing to worry about. Appendixes aren’t used anymore and it’s quite common to have them removed – especially with people who have to have surgery in that area.

So I’m not worried about it at all. It’s just funny that i wasn’t told that they were removing.. Or had removed my appendix. I found out a few years later.

Me and my family joke how it was ‘stolen’ haha! ๐Ÿ˜‚

So if you see my appendix anywhere… Give us a call! ๐Ÿ˜‰๐Ÿ˜‚

Hope at last and … Gangnam style?

I’m a few days late but this post is going to be about what happened this month 6 years ago..

I think the easiest way is to share my statuses and explain them the best I can, so first of all, here are my facebook statuses from March 2013… (By the way – I did have the exact date for each of these but I’ve lost them๐Ÿ˜‚ but they are in order! Haha)

So… this status above. For some reason, in my head they discovered my stomach was large in September 2012 … but by this status, maybe they discovered it later on down the line…

I remember having the tube inserted during x-ray (I was awake). They had to do it under x-ray because of the shape and size of my stomach. It wasn’t pleasant to say the least!

And yes… by this point I was very well known in the x-Ray department. As soon as I arrived I didn’t even have to say my name – they knew me so well and just was like “hey Katie!”๐Ÿ˜‚.

It was also by this point, where I’d had enough of having time of school… I was bored and missing my friends. I was also missing normality.

And this is where Gangnam style comes in… ah. This story still makes me chuckle๐Ÿ˜‚.

So… yeah. Also this status also mentions the time when my surgeon and his team ‘discovered the problem’ – which again, in my mind I thought that was discovered in September 2012 … obviously not๐Ÿคท๐Ÿปโ€โ™€๏ธ๐Ÿ˜‚. But then again, this may have been an additional problem?๐Ÿค”

So they found that by inserting a balloon inside of me… they could open up the top stomach valve which was almost so tightly shut .. so much so food was struggling to go down.

I remember being wheeled back to my ward after being in recovery and seeing my surgeon and his team standing outside my door… all smiling at me and my dad. It was weird … but a good weird….

When I find out why they were standing outside and what they had discovered – it felt like a massive relief! I was so happy that there was a reason as to why I had been struggling the way I had been – it wasn’t my fault! There was a problem there! And this problem could now possibly be solved!

Oh and the ‘Gangnam style’ situation …. I can still, to this day see my surgeon and his team dancing around the operating table to it…

I remember this PH Test… I had that tube down one nostril and my feeding tube down the other nostril … it was like my nose was a bloody charging socket! ๐Ÿคฃ

I can’t actually remember the results of this test … I just remember how uncomfortable it felt..

Ideas

This is a quick post to ask for suggestions about what you, as a reader, would be interested in reading about on this blog.

Unless something significant happens in my life, I don’t really have much to say currently. I could carry on with my story but the next part is the big chunky bit about the year 2013 when a lot happened with regards to having many many operations and my life changing. But ideally I’d like to start that in January – as that would mark 6 years.

Is there anything you’d like to know about me, anything you think you would be interested in finding out about me and my story? Maybe there’s some advice you think I could give?

Let me know by commenting on this or, as I will be sharing on social media, on any of my social media platforms.

Thank you,

Katie x

6 years continued + update on recent events

Hi! I know we’re in the middle of October now, well actually near the end, but I thought I’d complete the “6 years continued” story. To be honest there’s not much more to say, but I’ll tell you what happened the days leading up to me being discharged and what happened after I was discharged. (If you need a reminder of what’s happened up to this point, please check out my previous blog posts with “6 years continued” in the title)

As well as this, I will be updating you on recent events in my life. Quite significant things. To me anyway.

So, last time I mentioned the x-ray I had, the conclusion the doctors came to from seeing my notes, and briefly mentioned the picc line I had inserted.

Because, by that point, I could hardly eat anything – my new consultant believed a picc line would be most useful for me to have. If you don’t know what a picc line is, it’s basically a long tube that goes through a vein in, normally, your arm, to your heart. Or near your heart. It is a form of nutrition. But obviously, only used when people are seriously unwell.

Having this meant I didn’t have to worry about the fact I couldn’t eat and so was loosing a lot of weight and nutrients. This would help build me up whilst I was in hospital. At this stage I also had an NG tube (a tube that goes up my nose and down into my stomach). Gradually, I started having tube feeds. So a milk-like substance with all the nutrients and vitamins I needed was pumped into my stomach without me having to do anything. Little did I know, this was to become a regular routine of mine. I was at Kings for about 2 or 3 weeks (I can’t remember exactly)

During the last week or so I was just resting really. Understandably I had to, but it was hard because I was away from home. Yes, I had my dad with me. But my mum and brother wasn’t with me. They visited a few times, don’t get me wrong, but it wasn’t the same. I missed Home. I missed my friends. I even missed school.

The time came when my consultant was happy for me to be discharged, from King’s at least. He told us that they do need to operate however I still need to become a bit stronger, so he advised me to keep the picc line and NG tube.

I was then transferred from King’s to my local hospital. I stayed there for a couple of weeks. (I think, it might have been a bit longer) During this time I rested, had my picc line flushed every so often and began having regular tube feeds. And because I was now only about 10/15 minutes away from home, I was able to have many visitors. And Dad was able to go home and have a proper rest (because it was a tiring, stressful time for him too).

It was nice, in a way, but it wasn’t my proper home. I wanted my own bed. I wanted normality. I think at this point, I started to wonder, will ever have normality again?

Eventually I was aloud home for day visits. Haha, sounds like it was prison or something. The reason for this, is because I was having my ‘feeds’ at night. And so, during the day, I was free to do whatever. There was nothing for anyone to do to me during the day. So they decided that I could spend my days at home. And they eventually even said I could go back to school (which, by this point, I was thrilled about!)

I was quite fortunate that my school was sooo understanding and supportive. Me, Dad and mum went for a meeting with the assistant head at the time. We explained what had happened and what is planned to happen. Obviously, I had my tube in, on show, too and they took this into consideration, understanding that ideally I couldn’t be in the busy school corridors at break/lunch times and during lesson changes. They decided that I would be best going to a room called ‘AP’ (Alternative Provision – I think). It’s a room where I could do my lessons, have a teacher come down every so often to talk to me and give me some work to do. That sort of thing. They also decided I should be on short days. So i’d only be in for a few hours a day. This way I wouldn’t tire myself out too much.

So a regular day for me during that time, would be that I would wake up in hospital. I’d get up, be disconnected, go have a wash, get ready etc. Then mum would pick me up and take me to school. I would then stay for a few hours then be picked up and taken home. Then during the evening, I would be taken back to the hospital, get settled in and be connected ready for bed.

Eventually, the staff felt that me and my parents were ready to learn how to set up the pump. You have to be trained up on it. It’s quite simple so me and my parents caught on quite quick. When the staff acknowledged that we all knew what we were doing. We all knew about hygiene etc, I was allowed home permanently! I could have my feed at home. I could sleep in my own bed – yay!

We were all so happy! Finally – after what felt like months and months – normality! To be honest, after this, each day was the same. I’d get up, disconnect myself, get ready, go to school for a few hours and come home. I would then go to bed, in my own bed. That’s it. During my time at school, as well as what I previously said, eventually friends would come in to see me and I would also pluck the courage to go to some of my lessons. I thought – yes I’ve got a tube in my nose, so? It doesn’t bother me anymore. Yes people stared. But I just ignored them. That’s all I could do really.

Anyway, it got to November and, I remember this moment quite well, the post arrived one morning. I had just come back from shopping with a friend. It was addressed to my parents I think. But I knew it was about me, it had Kings college hospital on the envelope. This was it. This was the date of my operation. I opened it. I was right. “Katie has been booked for her operation on Friday 18th January 2013”. I looked at it. I felt a bit of excitement – because I knew that this operation could really help me as I was really ill (although the reality of how ill I was hadn’t hit me properly yet). Then all the nerves came at once. I cried. I was shaking. This felt real. I was having an operation. A big operation. I was going under the knife. I was having my organs moved around. Would I make it? What happens if things go wrong? I was scared. I hugged mum and Dad. Of course, I knew, we all knew, I had to have this surgery. But it’s scary. For all of us, but especially a 15 year old girl with her life ahead of her.

Below is a photo of me with all of my equipment. I think it was taken for an art project. I did a project on medical equipment. I found medical art and that and researched them. I drew a copy of this photo. (I thought it was interesting at the time) Sorry, I look a bit miserable – I don’t know why haha๐Ÿ˜‚

Okay so, nicer things now! I also said in this blog I will mention what I’ve been up to recently. You’ve probably noticed in a couple of my posts, that I’ve mentioned that I’ve struggled with anxiety and depression a bit in the past. I have good and bad days – physically and mentally! However recently, in both ways, I’ve been having many good days. I’ve been feeling positive, confident and quite motivated actually. I’ve challenged myself and taken on things that I would normally hesitate at and avoid.

These things include; going to a job interview and starting driving lessons! It may seem like normal things to many people – but to me. That’s two massive achievements!

Another thing, which I have surprised myself with – is that I’ve started taking up baking as a hobby!

Now, you will find out in detail why I, and my family are quite surprised by this, in future posts but let’s just say, my relationship with food has never been good. I’ve had times in my life when I can’t even be around food. But you’ll find out all about that in due time. So, yeah I absolutely love baking! It makes me happy and it’s a way that helps me show my creative trait.

That is all for now. Sorry it’s been so long! X

Whatโ€™s going on? (6 years cont..)

It’s kind of scary to think that all of this was going on around this time 6 years ago. Anyway, onto the rest of my story…

A lot of the time spent down in X-Ray was a bit of a blur if I’m honest. I’m told we were down in X-Ray for quite a long time. I remember the radiographer on the phone to someone whilst walking in and out the room. (The person on the other end of the phone, I found out later, was actually my consultant – he was directing the radiographer on what pictures he wanted taken at different angles). From what I’m told everyone was a bit shocked at what they were seeing.

The images appearing on the screen seemed to show that my stomach, liver and basically everything else in that area was in the wrong place. The main organs in the wrong place were; my stomach and my liver. My stomach was positioned vertically up my left side of my body and my liver was where my stomach should have been. I reckon I was in the X-Ray department for at least an hour or so. The radiographer was getting as many images as was instructed (by my consultant) and because we were in there so long, and the radiographer was taking a lot of images – a warning light apparently started flashing. This was to say that we were getting near, or had gone over, the limit of radiation that a person should have in one go. In total I had 72 images taken in that room. That number has always stuck with me for some reason. I remember seeing the number on the screen. Another thing that had to be done during the taking of images was moving my NG tube, which I still had. And by this, I don’t mean taking it out and putting a new one in a different nostril or anything, just moving it a bit from the outside so the inside – which was in my stomach – could be seen on the computer/image. I can’t remember exactly why. Maybe because it was getting in the way of important areas in the image?

So anyway, once I had spent my time down at the X-Ray Department Me, my dad, my nurse and the student nurse went back up to the ward. That evening (I think), my soon-to-be new consultant came to see me. He explained what he saw in the scans. Where the stomach and liver was, and various other organs. But the stomach and liver was the main concern. He mentioned an operation – which was suggested previously a couple of months back, but that was only a maybe at that point. Now, it was definite. I needed this operation. And this operation that was needed? It was quite a major procedure. At the time, it didn’t seem that major – I think I was just numb from everything that was going on. I smiled and carried on as per ‘normal’ – genuinely my usual reaction to something that doesn’t quite go right. I think also, because I was quite young, I didn’t quite understand the full meaning of it all. They had to move my organs aroundย – it still doesn’t seem that big of a deal to me if I’m honest. My Dad probably had it explained in a slightly more detailed way than was told to me. Obviously, he didn’t react to it and had the same attitude as me – although that might have been a cover to protect me. We were told that they couldn’t do anything straight away as I was still quite weak and needed to be ‘built-up’ with mainly tube feeds.

The following few days involved; speaking to my consultant and his team, having a procedure done (very minor op to insert a picc line for tpn/drip feeding), resting and the normal obs and blood tests.

Here are some screenshots of a few Facebook posts I uploaded at the time. Excuse my grammar and spelling back then. Some of it is a bit cringy if I’m honest ๐Ÿ˜‚๐Ÿ˜‚. But I’m showing you because, well, they’re quite light hearted and it just shows the sense of humour I had at this time.

^^^^^

Yes, I craved foods in hospital, mainly cheese though….๐Ÿ˜‚^^^^^^

(This was funny, everyone, including the staff were a bit puzzled as to who this ‘Jamie Rickers was. ๐Ÿ˜‚. That was until he actually came to the ward. We knew who he was then!๐Ÿ˜๐Ÿ˜‚) By the way – I can’t find the photo unfortunately)