Dannys Story – Wilsons Disease & Life After A Liver Transplant

Open letter To My Donors family & Other Donors.

As I sit and write this its currently Christmas time and most people are excited to spend the holidays with their friends and family. I should be super excited this year especially seeing as I had my liver transplant 5 months ago and so far everything is going great which I’m very thankful for. I just cant help but think about my donors family and all the other people that will be spending this Christmas with someone missing from their life. I cant imagine the heart ache that must cause.

I know that this letter will not bring anyone back nor do I expect it to alleviate the pain its simply a thank you from someone who has been given a second chance. Without my organ donor my family would be experiencing a very different Christmas this year and I’m sure not even they can’t put into words how grateful they are. I’m also pretty confident I can say on behalf of everyone that has received an organ we thank all those people that gave us another chance to live our life and spend time with people we love.

My organ donor has given me the opportunity to spend another Christmas eve with my Nan and Grandad, eating fish and chips, arguing over politics and political correctness gone mad. Its given me the chance to go and see my sisters on Christmas day. I can wind them up, eat all their food and we can all laugh and talk about how this year turned out. I get to see my brothers who are all growing at an alarming rate, each of them doing their own things in life and I’m so happy to be able to see what they will all achieve in the future.

Thanks to my donor over the last 5 months I have experienced so many amazing sunsets and sunrises, all of which feel that bit more special. I’ve had the chance to visit more of the amazing world we live in, I’ve been able to practice photography and enjoy more great food which I love so much.

Its enabled me to keep running Musicians Supporting The Homeless which is a small charity I set up in 2016.

Because of you I have laughed and cried with family and friends and enjoyed every minute of life during my recovery, I hope to achieve so much more in the future not only for me but for you and your family.

Although I have not meet or spoken with my donors family I feel i have gained them as a big part of my life. My heart really does go out to them this Christmas and every day after, all I can do is thank you and your son for having the compassion and willingness in the worst possible circumstances to still want to help someone out and save another persons life. Its an incredible thing to do, my family and I will be eternally grateful and if by writing this blog post it convinces one more person to sign up to be a donor then that’s a great thing.

I look up to the sky regularly and think about my donor, I have even been talking to him about what we are going to do in the future and I’m sure I’m not the only person that’s received a transplant to do it!

To me this has been like gaining a super power.

I just want to send out as much love as I can to everyone that’s lost someone this year or to people that have had an organ transplant and people that are waiting for one. Its all scary and uncertain times but your not alone, if it is heavy on you and you feel you need to talk with someone then I have added the links to some professional charities below and you can message me to ask any questions or maybe talk to someone going through a similar experience.

Mind – https://www.mind.org.uk/

Samaritans – https://www.samaritans.org

Sane – http://www.sane.org.uk/

I hope 2020 and future years are kind to you all.

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Youtube – https://www.youtube.com/watch?v=BYS2Sc2tGfM&t=102s

Family, University, Love & More Travelling.

After finishing my travels I went home with the idea of starting University in Cornwall, I had signed up to a Renewable Energy and Sustainable Housing Degree. Exciting times I though but life had different plans and due to some family issues I ended up differing for a year to help look after my younger sisters and brother.

This was a testing time, not for health reasons but due to a family breakup. The person who had been by my side the whole way through my illness, my Mum decided she needed to do something for herself.

This left me, my step Dad and our Grandparents to look after my two teenage sisters and little brother, although it was challenging and uncertain times we made it through as a family and I’m more than proud of how my siblings turned out. They are the best people I know, loving, caring, clever and hard working. I seriously couldn’t ask any more of them.

Anyway 2003 I went to University where I meet so many great people including a girl I soon fell in love with. This to me was my first love and we was together from the start of University to the end, the relationship continued for over 10yrs and I learnt a lot over them years. Its something I’d never change, although it ending was something that was very hard to get over. I think I need to do a whole separate blog post on relationships and heart break though 😂.

From my perspective health wise I was still doing very well, when I wasn’t at University I was working as a labourer doing Barn Conversions during the holidays and although this was a very physical job it was not something I struggled with. The only problem I did have over the years since my diagnosis which I forgot to mention was burst Varices in my throat. I found out it happened when I had blood in my poo, nice I know! I wanted to say to everyone if ever you have black poo or blood in your stools for more than one day i’d suggest going to the doctors ASAP as you may be bleeding internally and this can be serious if its not dealt with.

My treatment for this was a camera put down my throat (Endoscopy) and they banded up the expanded or broken varacies with small rubber bands. This cuts of the blood circulation and they fall off after a few days. I did find eating after these procedures a bit uncomfortable and I never liked having an Endoscopy but it was something I got used to. From that point I would have tests to make sure they hadn’t come back and the extra medication I was put on to deal with the situation was working.

Apart from that my health was pretty good throughout the years, I had a small house with my girlfriend and things were going well and I continued in the construction work. I did change jobs after a while and became a care worker for people with learning disabilities. This was never a job I expected to find myself in, like most things in my life it just happened. Its been by far one of the best experiences I’ve had in life though, I learnt so much about myself and people in general and it reinforced the fact that I was very lucky to have the health I did.

At the same time I was also working at a live music venue as a promoter and barman, this progressed to Bar Manager and the music promotion lead me to set up a charity called Musicians Supporting The Homeless (I will talk more about this in another post).

So to sum it up life had its ups and downs but my health was good and things were happening. I had two jobs and still had enough energy to have a good social life, this was up until maybe about 2016.

I left the care job I was in due to lack of protection from the manager of the care home and the company its self. I was being left in situations that shouldn’t of happened and when i raised the issue I was told to like it or lump it so I left ASAP. I have to be honest hear and say I was felling like something was not right within myself also, I found the job very mentally draining. Although it is a tough job there seemed to be something more but I didn’t know what.

Slowly over time I had lost focus of the future, I had no motivation and wasn’t sure what I was going to do. Well in fact I didn’t want to do anything! This really affected my relationship and in 2017 I split with my partner and ended up moving back to the area I grew up in, close to my family and old friends. Me being the person I am I didn’t think that my health was slowly getting worse, I just kept on trying to be ‘normal’. I even booked a trip to Thailand on my own for a month as I’d always wanted to go and I needed the time away.

During that holiday I knew something wasn’t right, I was sleeping way to much and had very little energy. I still did as much as I could and had a great time, but all was not right.

Well a few months latter when I had my annual hospital visit at Kings Collage Hospital I was told that they wanted to add me to the Liver Transplant List and that’s where the next journey begins.

****Please leave a comment, let me know how Wilsons Disease has affected you and any inspirational stories you have. I have left a link to my Facebook, Youtube and Instagram bellow, feel free to add me and ask any questions you have or just say Hi.****

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Travelling with Wilsons Disease.

After Collage I decided I needed a bigger challenge and wanted to do some travelling. Europe seemed like a great place to start as its pretty much on my door step so if anything happened to me while I was away it would be easier for me to get back home.

I decided to book my travel using a company called Bus About, this was a brilliant way to travel as it was fairly flexible and also reliable plus it was a great way to meet other travellers, as I was going on my own it was pretty handy. I will add a link to their website at the bottom so you can check them out, you may plan to travel Europe one day!

The next step was then convincing my Doctors that this was a safe and good idea. I had been relatively healthy since being Diagnosed with Wilsons Disease and on the medication so that wasn’t much of an issue it was more getting 3-4 months prescription sorted to take away. After a bit of messing around we managed to get it all sorted and before I left my parents got me a special medical bracelet that informed people I had Wilsons Disease should anything bad happen. I lost that bracelet after about a week of being away 😂

Places I visited

France
Belgium
Germany
Czech Republic
Austria
Italy, including Sicily
Croatia
Greece

I ended up working in Greece for about a month which meant I needed more medication sent out. Seeing as I was on a big party island that had a very strict drug policy I knew receiving a parcel of pills would cause a bit of trouble. When I went to pick them up from the post office place I was instructed to go to the police station. I had to sit down with the police and tell them what all the at tablets were for, although they didn’t seem entirely happy they let me take everything with me which meant I didn’t have to rush home and I could keep on working.

All in all I had the best time of my life and travelling alone really boosted my confidence and gave me the freedom to do what I wanted and not have to go along with a group. I would highly recommend going to see as many places as you can in Europe, there is so much history and beauty in a small space. Each country is very different and amazing in its own little way.

I did have to visit a hospital while I was in Sicily – that was an experience I will never forget. This was not due to Wilsons Disease but one day I came out in a rash from head to toe, I went to the nearest chemist but he did not speak English. Not many people did in Sicily and this made for an interesting experience!

The shop keeper lead me outside and hailed down a bus that was coming past, he pushed me on the bus and spoke to the driver and other passengers. I had no clue what was going on but presumed he was trying to help so went along with it.

After a short drive we pulled up outside a hospital and the driver got my hand and lead me in, he spoke to the nurse at the desk and sat me down on a seat. After a short wait I was taken into a treatment room where a nurse looked me other again she spoke very little English. After a quick examination she left the room and came back a few minutes latter, one in the room she gestured for me to pull down my trousers and bend over a bit! 😯 Before I knew what was happening she had slipped a suppository into my bum, told me to pull up my trousers the sent me off to find my way back to the hostel. To this day I have no clue why I came out in the rash or what it was, I’ve never had a rash like it before or since but I’m thankful to the lovely people of Sicily for helping me out in my time of need.

So to anybody that’s unsure about going travelling or on holiday because of your Wilsons Disease, speak with your doctors and if you feel confident and happy to do it then just go and have the time of your life.

Let me know if you have any funny stories from travelling or holidays in the comments below also feel free to add me on;

Facebook – https://www.facebook.com/danny.hiles

Instagram – https://www.instagram.com/

Busabout UK – https://www.busabout.com/

Blog Post 5 -Moving On and Moving out.

The reason I have been telling my story is because I want other people to know that life goes on and even when you have had a tough time things do get better. Stay positive and push yourself when you can, you will achieve great things.

Right back to the story, I had finished secondary School and although my GCSE test results where not that great after missing a lot of my final years of school due to my Wilsons Disease, I still wanted to go to collage and the collage I wanted to go to was a good 2 hour drive away from home but there was an option to stay on campus. The collage I wanted to go to was Sparsholt Collage in Hampshire, set in 450 Acres of farm land and countryside it was perfect for me. My parents were not to keen though as I was only 16 or 17 years old at the time and it was only a few years back I was in and out of hospital fighting Wilsons Disease.

To me life must go on so after a long chat with my parents they finally came round to the idea and then not long after that the time came to move out of my home. Obviously this was an exciting time but also a little scary, luckily the first year there I didn’t have to cater for my self there was a canteen that provided meals 3-4 times a day. All I had to do was remember to take my medication and renew my prescription when it was running low. The second and third year I was cooking for myself an essential life skill and something I actually really enjoyed. (Anyone that follows me on social media will know I love my food).

In total I did 3 Years at Sparsholt Collage, the first year I studied Game & Wildlife Management then the final two years I was studying Land And Countryside Management. I have a passion for being out doors especially in and around nature so this was a great place for me.

After 3 years at Sparsholt I had really grown as a person and my confidence was as high as it had ever been, I had made a ton of new friends and learnt so much from everyone. One of the best parts about it for me was the social aspect and speaking to people from all over the country, everyone with a different story. This lead me to wanting a new experience one that would lead me out of the UK and onto an adventure around Europe.

I will say that due to being very pale or possibly jaundice at the time there was few people early on that would shout stuff at me but that soon stopped especially as I seemed to make friends with everyone else. I also never really talked about Wilsons Disease and if someone asked what my medication was for I’d generally just say to keep me sane. I wasn’t ashamed or anything like that I just could never be bothered to explain everything plus when you say you have a disease sometimes people look at you with that “Shit, can I catch it” look. 😂 I just never wanted to be treated differently so for me it was easier not to mention it or let it define me.

How many other people reading this have gone to Collage or University and not let anything get in their way. Please comment below, I would love to hear your experiences.

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Blog Post 4 – Life Is One Challenge After Another.

This post is a little break from my life story, kind of! I want to tell you about one of the most important books I have ever read and mention a few others that you might like to read especially if you have some time on your hands.

I know the tittle of the book is cheesy and a lot of people don’t like self help book but this was a massive help to me at the time and still to this day.

My Dad (Colin Hiles) who is a life couch him self got me this book after my Wilsons Disease diagnosis. I was still in secondary school at the time so probably about 15-16 years old and I remember taking it to school but making sure it was hidden in my bag so nobody would see it and take the piss. 😂 Kids can be arseholes and will take the piss out of you for anything so I wasn’t going to be flashing this about plus reading something like this may suggest to others that you’r un-happy and I was far from it.

The book is very simple to read which was handy for me as I wasn’t and still aren’t the best of readers and soon loose interest. The author Andrew Matthews is also a talented cartoonist so there are lots of cool illustrations inside that I liked as was also into trying to do my own cartoons characters at the time.

The thing with any self help book is that they are not an instant fix, you don’t just read it and become ‘Happy’ its a set of rules/tasks that you have to work on everyday of your life and you have to be of that mindset that your already happy. Even when life is doing everything it can to bring you down you have to understand there will be good days and bad days but you can always overcome them.

I understand this may not help some people as life is cruel and Wilson’s Disease can destroy people and family’s so everything I write in this blog is just from my perspective and experiences.

Even to this day I have to practice mentally the things I learnt reading this book and not everyday am I happy or jumping with joy but it has certainly helped so I thought I should share it with other people.

Book 2 – Not Impossible (this is not a self help book)

This book I read recently and its just a great uplifting, inspiring book written by what I think is a really cool dude. I wont bother going into all the details but if you want to be inspired I highly recomend reading it or taking a little look on Youtube first to see him talk. https://www.youtube.com/watch?v=ihzObEqvcHY

If you have read any good self help books or inspiring stories please let me know, I am always looking for new things to even if they do take me a year to get to the end!

Blog Post 3 – Life after being diagnosed with Wilsons Disease.

**Barnwell School – cant remember the year looks. I’m the lad in the white t-shirt, center picture**.

Going Back To School

Right, now my medication was becoming a bit more settled I really wanted to get back to school and see all my friends much to the disapproval of the Doctors. They kept telling me I should be resting at home and trying to get used to a new routine, I was fighting my nausea everyday and living off of Salt and Vinegar crisps and Ginger biscuits as these were two things that helped settle my stomach.

My Mums words – “I think you wanted to get back to school just to get away from me because I was a nervous wreck” 😂🤷‍♀️ Who could blame her this was all very new and there was a lot going on.

I don’t remember to much of being in lessons and never moaned about anything I was just happy to be around my friends. It wasn’t until parents evening that the teachers told my mum I would often be sick in the bin during class or run out the room to the toilets. I would soon come back and carry on like nothing had happened!

I did struggle with my GSCE’s though and definitely didn’t get the grades I would have if I didn’t miss most of the last two years! Plus I wasn’t that interested in exams I was more into having fun with my friends, like most teenage kids to be honest.

While I wasn’t at school I would spend a lot of time with my mum and her friends, coffee mornings and lunches was a regular thing and I must admit I enjoyed going for lunch when I could eat especially with her friends. (Im currently writing this while organising lunch with some of the same people, they have been helping me out again while I recover from my liver transplant. It’s funny how life goes round).

I asked one of our family friends what she could remember as I was often with her especially if my mum had gone shopping or had to do something with my sisters.

Sports,Hobbies and General Shenanigans.

I couldn’t play football and running was out of the question, I didn’t like the fact I wasn’t as fast as I was and didn’t really have the ambition to build back up to the fastest runner in the school or county so I didn’t go back to the athletics club or any of my football teams. I did however keep on spending time with Andy (Best Friend), although we went to different schools we spent most of our time together after school.

Andrews parents were estate/game keepers on someone else’s land that had a fishing lake, quads and tons of acres for us to basically do what ever we liked on. We would often steal/borrow Andy’s older brothers fishing stuff (until we got our own) and spend hours down the lake. Like i mentioned we had quads and 4 wheel drives we could use despite only being about 14-15 years old. We both got into mountain biking along with some other boys from the village and would spend hours out side making jumps and riding around an old quarry. All this came together as my medication was working and I was feeling better, so roughly after a year of being out of hospital I was back to being a ‘Normal’ kid. I just had to make sure I had my medication with me for the mornings, afternoons and evenings.

Andy’s first 20lb Carp
Me with a fishy..

The next step for me was moving out and away from my parents much to their dissatisfaction and that’s the next blog post….

Below I have given a few tips for remembering your medication, It’s often overwhelming to start and you spend a lot of time worrying so hopefully a little advice will help you out.

If you have any questions please comment bellow or if you are enjoying the blog so far just leave a little hello or emoji just so I know who’s having a read and if this is helpful.

You can also add me on;

Facebook – Danny Hiles https://www.facebook.com/danny.hiles Instagram @lost_in_life2017 https://www.instagram.com/?hl=en

Staying on-top of my medication.

The best way to for me to keep on track with the medication I had to take was got one of those weekly pill pots that had all the different sections in. I would keep some extra pain killers in there just in case I ever needed them so we got one with extra compartments and I would take it with me when ever I stayed away or went out for the day. You can pick them up pretty cheap on Ebay or Amazon and its definitely worth it, saves you worrying if you about trying to remember if you had taken your morning, afternoon or evening meds. Plus its a good way of knowing when you need to get your prescription renewed a week before you actually run out.

Blog Post 2 – What happens next?

In and out of hospital.

So to carry on from my first post, I had just been told that I had Wilsons Disease and the Doctors told me about my options. There was medication I could try and that would hopefully reduce the copper levels in my blood and prevent any further damage to my Liver and stop any neurological effects from taking over. The second option was to have a liver transplant and that would then get rid of the Wilsons Disease from the get go, this was the option they were keen on. They were pressing to do a liver transplant to sort the problem out from the start and they explained to me that taking the medication wouldn’t guarantee to fix the problem and I would still probably need a transplant at some point in the future.

For me the transplant seemed like an extreme option and while I still had some fight in me I wanted to try the medication option. Although I would have to take medication 2 – 3 times a day that didn’t really bother me. I just thought that seemed like a lot better option than being sliced open and having to risk the new liver being rejected by my body. The main medication they put me on was Penicillamine – that would mix with the copper in my blood and help it be removed in my urine. There was a cocktail of other drugs that were added to the mix to help out including, Pyridoxine – vitamin B6 , Omeprazole which helped stop some of the nausea caused by the other medication and Codeine to help deal with the pain. One thing I wasn’t happy about was the fact I remained on Codeine for many years not knowing it was addictive and not the best thing to take daily, when I did find this out many years latter I requested it to be taken off my repeat prescription which the doctors where happy to do. I was no longer in pain but taking it daily because it was part of my routine.

There were many things that were going to have to change at this point, my diet being one of the main things especially for the first year or two while my medication was being leveled out and my copper levels were still high. *I have added a section at the bottom of this post with all the foods that should be avoided as I have seen a few people asking for advice.*

The other thing that I wasn’t happy about but was having to avoid any kind of contact sports due to having an enlarged spleen, that killed the dream of becoming a pro footballer and you ask any young boy who is football mad that was a big blow (we all believe we could have made it pro if it wasn’t for a dodge knee or some kind of excuse🤣😂🤣 ). At that time though i was just happy to try to get better than I was and not to die.

This all came at what some people would say is an important time in life for anyone growing up, it was my last two years of secondary school I was 14 years old and supposed to be doing my GCSE’s. It was a time when normally people are going through puberty, messing around with girls and generally discovering who they are as a person. All this was put on the back burner for me and I just thought of myself as the kid that was ill and not at school, I cant remember if Wilsons had slowed down my body going through puberty, obviously everyone is different when it comes to that so its hard to tell and I can’t say I was really thinking about it much at the time. My focus was just on getting better and proving to the Doctors that I didn’t need the liver transplant they were so keen on doing.

The next year was full of ups and downs, I spent 3 months in Kings Collage Hospital just recovering while they got the cocktail of medication sorted. Kings being full of student doctors and Wilsons being such a rare disease I became some what of a celebrity. It wasn’t uncommon to be examined buy 10-15 student doctors every day, I soon got used to being poked, prodded and examined by multiple people and certainly lost any inhibitions I had about my body and personal space wasn’t really a thing anymore 😂. To me it filled the time and I just thought how else would these people learn if they didn’t get the chance to see things first hand for them self. The doctors would always ask if it was ok for the students to sit in during an examination or to practice themselves, the same thing happened for blood tests and any thing else. Id happily let them stab me multiple times until they got it right. I was often called to go to a building across the road from the ward I was on where they had a special machine to examine your eyes, as I mentioned in my first blog post one of the best ways to diagnose Wilsons was to look for KF rings in the eyes (Kayser-Fleischer Rings, pictured above). I would sit there for an hour or so while all sorts of medical professionals would take a look, this was a great excuse for me to get off the ward for a while and chat to some new people.

After 3 months in Kings Hospital I was sent home but the recovery was far from over. After being home for 30 minutes I was back in an ambulance and taken to my local hospital (Lister Hospital, Hertfordshire). I was struggling with the new medication and kept being sick, this was very unnerving for me and my family as we were far from experts on the situation and the best place for me during this time was with medical professionals. The doctors from Lister Hospital were working closely with the doctors from Kings as it was all fairly new to them as well. After a week of back in hospital things seemed to settle down a bit and I was keen to get back home. Well I was home for all of an hour this time and then back in an ambulance and into hospital, this went on for about 6 months. Each time i was sent home I would last for a bit longer before an ambulance was called again. I lived in a village at the time so everyone knew what was going on as nothing stays privet, people would be out the front door looking and waving me back off.

A few things stuck out during this time the first and biggest thing was when the doctors said there was also another young lad who had been diagnosed with Wilsons Disease in the same hospital, they asked if i would like to meet him. I said yes of course as I had already been spending a lot my time visiting the younger sick children and trying to cheer them up. This will stick in my mind forever and although i’m not religious it made me think I am here for a reason and I have to do my very best to make a difference in this world. The poor lad was wheeled over in a special chair and his parents were with him, I had not been told how badly he had been effected by Wilsons. It had attacked his brain leaving him completely paralysed and basically brain dead, I knew this could happen but it was the first time I had seen it first hand and to be honest it was very scary and left me a bit shaken. His parents spoke to me for a while but I didn’t know what to say, they said they were going to have to change all the copper pipe work in their house and I don’t really remember much else I was taken back and shocked. Again this just made me realise how lucky I was and that I should never complain about my life, I had got away lightly although I almost died I was in a stronger place and things could have been so much worse for me.

During my time in hospital I had one friend (Andrew P) who would came to see me a lot and to this day we are like brothers, I love him to pieces ❤ and am now Godparent to his two lovely children. I mean i’m sure given the choice at the time he would rather not have been spending his time visiting me in hospital but his mother who I am lodging with at this time is a saint and she probably made him visit. He never showed that he didn’t want to be there though and I remember playing pool in the kids play room him while dragging around some kind of drip and just laughing my head off. I also woke up next to a friend one morning who had been brought in with Pneumonia of the lung, Andrew and I would stand either side of his bed and pump it up as high as it would go (this was before the time of electric controlled beds) then jump on the button that would shoot it back down towards the ground. We’d fiddle with all the controls to things behind his bed and between the three of us just have a good laugh.

Anyway my trips to and from hospital went on for about 6 months this was on top of the 3 months I had already spent in Kings Hospital, all this time I remained positive and like i mentioned was determined to get back to a ‘normal’ life……

The next post I will talk about getting back to school and what came after that, hopefully it will show that life can be ‘normal’ and you can still have lots of fun.

Diet Sheet*

My First Blog Post

Being Diagnosed With Wilson’s Disease – “Am I Going To Die?”

For this first post I had to ask my Mum what she could remember as we have to go all the way back to the years 2000 – 2001 and I don’t really remember too much about what was going on at the time. I also have to say this is just my personal experience of Wilson’s Disease, from what I have seen everyone’s experience of having/dealing with the Disease is very different.

Before the year 2000 I was a very fit, healthy young lad. I had a great record of attendance for school, not that I always enjoyed it and I was a very keen footballer and athlete. I played for my schooled team and a Sunday League team, I ran at an athletics club and enjoyed playing most sports.

When I asked my Mum what she could remember she said it started in the summer holidays of 2000. I was feeling tired all the time and was sleeping a lot plus was moody which was slightly out of character for me. Mum didn’t know if it was me just being a typical teenager (I was the first child she had so it was all new to her), I was slightly anemic as well so she took me to the doctors for blood tests. The blood tests came back with a slight liver abnormality but the doctors said it was nothing to be concerned about, so it was business as usual. I kept on going to school and playing football but all the time I was becoming more and more tired and loosing my fitness. I went from being the fastest runner in my school/football team to struggling with the 100m. I remember falling asleep on the bus on the way home from school and when I got home I would have dinner and go straight to bed.

On Christmas Day 2000 we had the usual Prawn Cocktail starter which made me violently sick (most of you will know Prawns and shellfish in general are very high in copper). Me being the person I am after being sick I went straight back to the dinner table to carry on eating the rest of my Dinner, not much stops me from eating. On NYE I went to a friends house as his parents were having a house party but I came home early because I said I wasn’t feeling very well.

A few days latter I was taken to hospital due to having severe stomach pains and a swollen stomach just like a pregnant lady. We later found out the swollen belly was due to water retention, while at the hospital they thought I had appendicitis but after doing test they ruled that out. I remember being in agony and screaming in pain and my parents refused to take me home until the doctors had figured out what was wrong with me. After 3 weeks in Lister Hospital, Stevenage, UK they had their suspicions it may be Wilson’s Disease. From there I was transferred to Kings Collage Hospital in London where they had specialist Doctors.

After lots more tests it was confirmed I had Wilson’s Disease, one of the main tests being the eye test where they could see the copper rings in my eyes. The medical term being Kayser- Fleischer Rings (KF Rings).

By this time I was very very ill but at the same time still very positive so my parents say.

Mum – “You asked the doctors if you was going to die and they said they were going to do their best not to let that happen, for a parent to hear their 15yr old son ask that question was devastating but you took it all in your stride…..”

Below are some facts/information about Wilson’s Disease and in the next Blog post I will talk about what happened after my diagnosis, I think there is an option for you to leave your email bellow and that will then inform you of any new posts that are put up. If you have any questions please contact me on Facebook – Danny Hiles or on Instagram @lost_in_life2017 and I will do my best to answer plus if people keep asking the same questions it will give me an idea of what to write for future blog post or I may also start a Youtube channel to answer questions that way as well.

What is Wilson’s Disease?

Wilson’s disease (WD) is a rare inherited disorder of copper metabolism in which excessive amounts of copper accumulate in the body. The buildup of copper leads to damage in the liver, brain, and eyes. Although copper accumulation begins at birth, symptoms of the disorder only appear later in life. The most characteristic sign of WD is the Kayser-Fleisher ring – a rusty brown ring around the cornea of the eye that can best be viewed using an ophthalmologist’s slit lamp. The primary consequence for most individuals with WD is liver disease, appearing in late childhood or early adolescence as acute hepatitis, liver failure, or progressive chronic liver disease in the form of chronic active hepatitis or cirrhosis of the liver. In others, the first symptoms are neurological, occur later in adulthood, and commonly include slurred speech (dysarthria), difficulty swallowing (dysphagia), and drooling. Other symptoms may include tremor of the head, arms, or legs; impaired muscle tone, and sustained muscle contractions that produce abnormal postures, twisting, and repetitive movements (dystonia); and slowness of movements (bradykinesia). Individuals may also experience clumsiness (ataxia) and loss of fine motor skills. One-third of individuals with WD will also experience psychiatric symptoms such as an abrupt personality change, bizarre and inappropriate behavior, depression accompanied by suicidal thoughts, neurosis, or psychosis. WD is diagnosed with tests that measure the amount of copper in the blood, urine, and liver.

About Me

My name is Danny Hiles and the time of starting this blog I am 33yrs old. I was diagnosed with Wilsons Disease 17 years ago and just this year (2019) I had a Liver Transplant. Im writing this blog to let people know how both living with a Liver disease and having an organ transplant has affected my life and hopefully educate and inspire other people that are going through something similar. I understand everyone experiencing something similar may have different symptoms and no two peoples situation are the same but I hope this helps some people.

If anyone has any questions please contact me on either; Facebook – Danny Hiles https://www.facebook.com/danny.hiles Instagram @lost_in_life2017 https://www.instagram.com/?hl=en

Book 2 – Not Impossible (this is not a self help book)

Other Links

Going Back To School

Sports,Hobbies and General Shenanigans.

In and out of hospital.

Diet Sheet*

Being Diagnosed With Wilson’s Disease – “Am I Going To Die?”