Did Wilson’s Disease affect me and the way I was at School?
I had never really thought about how Wilson’s Disease has been part of my life from birth, I tend to think of my life with Wilson’s from when I got my diagnosis.
The reality is, it was probably at an early age that some signs of Wilsons were showing and after speaking to lots of other Wilson’s disease patients, I have seen how it has effected them in so many different ways and sometimes from a very early age.
I recently meet up with my Dad and he gave me loads of old photos, school books and school reports from when I was in primary school, age 5 – 12.
Me with an original iPad, some slate and chalk.
Reading the reports was funny for me as I don’t think I have changed much since then. 😂
My reception school year report reads like this and I would have been 5years old.
School Report – year 1991
Speaking and Listening – Danny speaks quite clearly and can hold a short conversation, but he finds it difficult to concentrate on any subject – during a class discussion he will often respond with something on a totally different topic from that being discussed! Nevertheless he has interesting comments to make and his communication skills will develop as he get older.
Reading – Danny recognises a few words and can match pairs of words on cards, but he does not remember them from one day to the next. He needs to do a little reading practice every day, pointing to the words as he says them.
Writing – Danny is still carless and untidy with written work, he needs a lot of practice in the correct formation of letters.
Going through the rest of the school reports after that one there is a very similar theme and I do remember finding school work very hard and confusing.
There was many times I would run away from school and go back home.
Year 2 School report.
Some nights I would cry in bed because I found it all so hard and I didn’t understand why and I remember my Dad telling me it was ok one night and he told me about people like Thomas Edison, Leonardo Da Vinci and Albert Einstein who all dropped out of school or did badly.
As the years went on I was told I had dyslexia and that would be one of the reasons why I found some things hard or confusing.
Its only recently, after talking to lots of other Wilson’s Disease patients, that I have figured that some of the problems I was having may have stemmed from having neurological side affects.
The copper build up in the brain can cause these issues and for some people the neurological side affects can cause loss of speech, loss of movement and even brain damage. That’s why getting a diagnosis so treatment can start ASAP is vital sometimes.
Despite finding school hard I still went on to Collage and University. I managed to make it through and I have never had any problem holding down jobs.
I currently run a charity that I set up in 2016 and have many more plans for the future, so I just wanted to let people know that even if you or someone you know is struggling at school because of Wilson’s Disease that’s ok.
There is still a great life ahead for those that are not the best academically.
If you have any questions please feel free to ask, its nice to share experiences and help others.
When I had my liver transplant back in 2019 I really had no idea what life was going to be like after. I had never spoken to or meet anyone that had had a transplant of any kind.
Before my operation I was invited to my Hospital (Kings Collage London) to listen to some medical experts and a man that had already had a transplant.
They were talking about the procedure its self, the medication we would need after and the sort of things we would have to avoid/do to keep healthy.
I remember the nice man that was there as a transplant survivor, although he was super nice he was living a very sheltered life, hiding away almost. He would not shake anyone’s hand and this was pre-covid before that was the norm.
I totally understand that’s what he is happy to do and I know that transplant patients need to be aware that they are walking around with a compromised immune system but it did leave me wondering what my life was going to be like after I had my transplant.
After my transplant I had many medical professionals visit me while I was recovering giving me all the information they thought I needed but the best visit I had was from two lovely ladies that had also had transplants.
They told me about all the holidays they had been on, their gardens that they liked to spend time in and all the great foods they had been eating. It was very reassuring and positive to speak to these wonderful ladies that had been out enjoying their life to the full.
When I got home from hospital there was still loads of questions I had running round in my head and I thought the best people to speak to about it was other transplant patients.
This is when I reached out to other people who had been diagnosed with the same Liver Disease as me, Wilson’s Disease. Now not everyone with Wilson’s Disease that I spoke with needed a liver transplant but I still thought they had an important story to tell for other Wilson’s Disease Patients to hear.
Anyway the point I am making with this blog post is that after starting up Danny Chats and speaking to 20+ different transplant patients so far, I have learnt that the possibilities after transplant are endless.
I have had the pleasure of speaking to people that have started their own business after transplant, I have spoken with people that do marathons and triathlons at a very very high standard and also people that just enjoy doing a 5k park run.
I’ve had the pleasure of talking to people that have started families post transplant and others that have all sorts of animals for pets.
I have spoken to people that still love to travel and experience new things and people who enjoy trying new foods.
I understand its easy to get hung up on the very small list of things you cant do or need to avoid but the reality is the list of things we can do is endless.
I’m not just saying this because I made the videos/podcast but I definitely believe listening to other peoples stories is a very inspiring thing for anyone who is just starting out on their transplant journey or who has been on it for a while but still has lots of questions.
Here is a link to my Youtube Channel for anyone that wants to check it out –
If you would like to join me on an episode of Danny Chats or you have any questions then please feel free to give me a message on Facebook Or Instagram
Being a transplant patients sister– Written by my sister Georgina Fox
Lets go back to December 2018, Danny was in our local hospital again and as per usual he “didn’t know why he was there” this was always Danny’s response.
Being his sister I had a gut feeling something wasn’t right, I had been working in Leeds making the daily commute of 156 miles each way and then had a 4 hour care work shift. I was planning on dropping Danny a Mcdonnalds into the hospital after my shift finished however I phoned him to tell him I was so tired and id come tomorrow instead and that is when he dropped the bombshell, I say bombshell although it was no different than him telling me he was going to the shop to get some milk.
You see Danny is so calm and collected when something is wrong most people would panic but not him, and I suppose although I had a million questions and my heart had sunk into my stomach I knew I had to be as strong as him, that’s what he needed.
Christmas was just around the corner and with my hand on my heart I questioned would this be the last? Im a realist but I also over analyse things and look at every eventuality (its actually what im paid to do) along with finding solutions however nothing in my power could ‘Fix’ this. So rather than dwell on what I couldn’t do, I rallied the family together and we brought Danny a hospital bag of all the things he would need during his hospital visits. Dannys not the most of organised people when it come down to this kind if thing so it made sense to make sure it was all done, one less thing to do when ‘THAT’ call came.
Christmas came and went and we were now into 2019, with a million questions still going through my head I made a promise that Danny would not be alone and I would be his hospital buddy, its not actually something we discussed I kind of just told him I would be there no matter what.
The First call came and I let Danny down – with 3am starts so I could drive to Leeds I was fast asleep and it wasn’t until my step daughter woke me up I realised what was happening. I called Danny but he was already on his way home. Feeling totally helpless in the time he needed me the most I wasn’t there.
Time soon passed and I could see my brother drifting away I mean mentally that is – I could see the frustration and boredom because he was unable to work so I decided he needed a focus. That weekend we went and brought some fertile duck eggs and put them in the incubator and that is when Danny’s daily focus became my small holding.
Within a few days I noticed a huge difference he was up early and helping me with things id struggle to do on my own, not only that but would also do the morning feeds so I could be on the A1 heading to leeds by 4am.
Me with a hand full of chicks.
We soon came to the Easter bank holiday, my god was I looking forward to a break, our duck eggs were due in 5 days time there was so much to do to get ready for their arrival.
Then came the call, this time I was awake, I say awake I had been up for 20 hours but adrenalin kicked in, putting my pants on inside out in the mad rush I got dressed, grabbed some clothes and kissed my husband goodbye. I drove to the other end of the village where Danny lives and I waited with him for the ambulance.
Danny didn’t want me to join him in the ambulance so I drove to London and met him at the hospital. On the journey there I had so many thoughts running through my head, what if it goes wrong? what if he doesn’t make it? At 27 years old would I have to plan my brothers funeral? What will his after care be? Thinking back none of them were positive!
I found Danny in his allocated room at the very end of the liver ward, he was so chilled out and that’s when I had to pull myself together. I made myself comfortable in the chair next to his bed and soon after I heard snoring, the shit bag had gone to sleep and im sat there pulling my hair out on the inside! Typical Danny. I couldn’t sleep so I went down stairs to get a coffee, by this point I had been awake over 27 hours.
At around 8am the nurses and co-ordinators came in this is when I found out Danny had listed me as his next of Kin. Wow this blew me away and I felt totally honoured but at the same time I also realised if anything went wrong id be the first person they told.
While Danny signed the forms the co-ordinators and I had a good talk, I managed to ask them some of the million questions I had in my head, you see I had been doing my own research and looking at success rates, what the procedure would entail and life after.
Danny and I then sat for another hour he kept taking stupid videos of me and it was like being children again, we were bickering and messing around then the nurse came back in for us only to be told the op was cancelled – a sigh of relief on my part but I also knew he needed this op and we would soon be back again.
We went into the high street to get some food as Danny had been Nil by Mouth for over 16 hour apart from my coffee I also went without food as a sign of support for Danny – Silly I know but in my mind it was a little gesture. We went to this little pastry type shop, Danny got Gwaokamolis (well that’s my name for them) they looked like spring rolls with a soft paste inside but it was a sweet treat not savoury.
The journey back home we were laughing, singing and joking and just being siblings it was actually a really nice journey reminded me again of when we were growing up.
Time soon past and our ducklings hatched – we then decided to incubate some chickens too. The farm was growing as we passed through the spring months towards summer. We had fenced off an area in my garden and created a large veggie patch too.
Georgie with one of her Lambs
Then on a Sunday morning came the next call. This time I was more calm, I agreed with Danny I would do what I needed with the animals and I would aim to get to the hospital for around Mid day.
I actually went to Tescos and brought stuff for my own ‘hospital bag’ so I was also ready.
I made the journey into London making several phones to update the family – This was also my role, all communication was channelled through me.
I arrived at the hospital and then the nerves kicked in, the questions began to spin inside my brain, again I couldn’t switch off.
I found Danny in a smaller room this time and it was a bit of a squeeze. I made myself comfy in the chair in the corner. I took my shoes off as my feet felt hot, within a few minutes I heard “ffs is that your feet put your shoes back on” it made me chuckle and that was my que to go and get a coffee.
We were soon moved into the big room on the end and once again while Danny was snoring I made myself comfortable in my chair for the long wait ahead. Minutes turned into hours and hours turned into days, well that’s what it felt like anyway!
The nurses did their usual in and out taking Dannys obs, signing forms etc but once again right at the last minute the Co Ordinator told us the op was cancelled.
I think both of us were so disheartened this time. Even though Danny was as cool as a cucumber I always thought about the emotions he was probably hiding. I know I found the day after always the hardest I suppose that’s when the adrenaline wore off and the reality of having to do it all over again hit, along with being super tired probably didn’t help.
As always we fell back into our daily routine quite quickly, I was making the daily commute to Leeds and Danny was doing the morning shift for the animals although for some reason this time I didn’t spring back.
I came home from work one day and mentally broke down, the combination of a new job, 18 hour days, a teenager not doing as she’s told and the whole “ will I still have a brother at the end of the year?”, “how many more times till he gets his op?” all got to much…… I had finally got to the point where I couldn’t take anymore, I had been a ticking time bomb and I finally went off. I think it also goes back to not being in control, I hit my lowest point with mental and physical exhaustion and I still couldn’t fix it.
My work commitments wouldn’t allow me time off – so I had to soldier on. Just like Danny always did. I spent many journeys to and from Leeds in tears. (not that I told anyone) with 3 hours to myself with each commute that’s when my brain would go into over drive with questions and being at my lowest point I couldn’t switch off and I couldn’t talk to anyone either – I always put on the big brave front to my family when they asked questions I always remained positive to them I didn’t share my “dark” thoughts.
My work commitments meant an over night stay in Leeds on the 30th June. This is the only over night stay I had planned all year and it was because my project I was working on was going live so I didn’t really have a choice. The reality was 1am Sunday morning I left for Leeds after having only 1 hours sleep a trundle up the A1 I arrived at the factory for 4am, it was a long stressful day, with certain things not falling inline with the cut over plan. By 9.30pm we were on a conference call and that’s when my phone rang and I just knew what it was for. I actually couldn’t speak I had never been in my work environment before when we received the call and I just burst into tears in front of the whole project team.
I now had a 4 hour journey ahead of me from Leeds to London. There was no question in me staying I had to go! My satnav took me down the M1 and my gosh was this a horrible journey, for the time of day there was a lot of traffic on the roads, I needed fuel, food and to get to London ASAP.
I got to Milton Keynes and all of a sudden we came to standstill and my journey soon turned into 5 hours before I got to King college.
Walking down the corridor, grabbing a Vanilla skinny Latte from Costa on the way, carrying 2 laptops, handbag and my own hospital bag I think I was cursing this time. “he best get this bloody transplant this time!”.
It was early hours of the morning, people were worried about me doing the journey from Leeds to London, so once I settle in my chair in Danny’s room I turned on my laptop and fired off some emails and text messages to people.
Danny was soon fast asleep and before I knew it the morning was soon with us, the usual routine followed, Danny had his shower, put on his gown and stockings and signed the forms. The transplant co-ordinators came in and this time a few extra people followed, I knew this was it.
I left Danny to make some phone calls and went a grabbed a coffee and to make some phone calls of my own, on my way down to the coffee shop I walked past “The Liver” being wheeled into the theatre, “we are so close” I thought.
I soon was back upstairs with a room full of doctors, nurses etc there really was no going back, fighting back the tears I look at Danny and he has the biggest grin on his face, like a little boy about to open his Christmas presents. The doctors left the room and we quickly packed up a few things.
Demetrey the co Ordinator came back in, we were ready to go, they let me walk to theatre with them. Following behind my fear turned into immense pride and I couldn’t stop smiling, Danny charging ahead like he was on a mission……. Stupid? Crazy? Bloody idiot, I don’t know what others would have said its not your normal scenario, but I was proud!
We could see them prepping the theatre from an enclosed room just outside, we said hello to some of the team and then it was my time to go. I got the most half hearted big brother hug….. you know the one where its not cool to hug your little sister, and that was it he was gone, through the doors and into theatre. I turned my back to the door and the tears began to flow and I couldn’t stop, “was that really it?” a question no one could actually answer!
The Transplant co ordination team were so supportive, they helped me empty the room Danny and I had been staying in, I took the majority of our belongings down to my car and then sat in the Costa downstairs waiting.
Being the go live day of my project I joined several conference calls from Costa to help pass the time, I was told theatre would ring me several times throughout the procedure with an update on how things were going.
At 12.50 I got my first call, I felt sick to my stomach, in fact I think I felt sick throughout this whole process.
“Danny’s Liver is out, and the new one is in, they hope to get the blood flowing within the next 30 mins to an hour” is what the nurse told me.
Having to relay all updates back to family and friends I had several watsapp group chats followed by several phone calls. If I’m totally honest I found this tiring, but if the shoe was on the other foot id want to be kept informed.
The next update came at 14.45 – “ the blood is flowing nicely and they are now doing the plumbing work to put everything back together, hopefully another couple of hours and the operation would be complete”
Again this was replayed back to family while I continued to work, I cant actually tell you how many Coffees I’ve consumed at this point as ive been awake for over 3 days solid!
At 16.29 I got a call to say “Dannys op was successful and he is leaving theatre and going into Intensive Care and o could see him in 30 mins”.
Relief hit and the tears flowed once again however when I entered ITU I was not prepared for what id see. Danny had asked for a photo but it was not one I could take. His face swollen, tubes everywhere this wasn’t my brother and once again I broke down. (Its an image that haunts me now!)
I gave him a kiss and agreed with the nurses id head back home to Hertfordshire. We agreed I’d get back for 11am the following day ready for when they began to bring Danny around.
I made the journey home not that I remember much, I think auto pilot kicked in and got me home. My husband ran me a well needed bath and I checked on the animals.
As I sat on the side of the bed ready to climb in, my phone rang….. it was the hospital, Dannys body was fighting the sedation I had to get back there quick!
I phoned my dad – Dannys step dad who is ia black cab driver in London, he could get there faster than me. I don’t think I even got dressed this time, shoes on rocking my PJ’s I jumped back in the car, call me mad but I made a promise id be there when he woke up.
I arrived at the hospital and Danny was awake with my Dad by his side, his hand eye coordination was shocking so I was helping feed him some ice cubes to sooth his throat from all the tubes.
Although he was high on drugs, and had just had a major operation the sibling humour was still there, my brother was back!
After an hour and checking he was ok I made the final trip down the corridor for the day heading towards the car park to head home, stopping for a final costa with my dad.
I think I finally arrived home at 3am Tuesday morning, climbing into bed I shut my eyes and bam 6am my alarm went off.
I had several meetings online to attend along with sorting the animals before heading to London at 11am to visit Danny.
Danny’s Dad had been on holiday when we first got the call and it took 2 days for him to get back to the UK, after spending some time with Danny, I meet up with his dad, updated him and handed over.
The operation was over, and I felt the pressure was off, between my Dad, Danny’s dad and Step mum and my Sister we made sure Danny had visitors twice a day every day, even if at times he just wanted us to bugger off!
He was moved to the Liver ward just 2 days after his operation.
His progress over the next 4 days was amazing both encouragement from family but the care he received from the doctors and nurses all was a critical contribution to his after care and speed of recovery.
4 days after his op I had the pleasure of taking him downstairs and outside (it was a beautiful day) in a wheelchair with assistance from my husband, I was so nervous id tip him out, although to be fair it would be pay back after he did it to me after my appendix removal!
Danny continued to recover at an amazing rate and just 10 days post op he was allowed to come home.
Once again (there is a pattern here) I was sat in the Leeds office, he phoned to say they were thinking of discharging him so I asked for the following day off so that I could collect him.
20 minutes passed and he phoned again, he had been discharged and kicked out his room, the drive from Leeds to London began again, although this time I took the route down the A1.
I was very nervous driving Danny home, breaking too hard, hitting a bump in the road would be so uncomfortable for him and I think its safe to say this was the slowest journey ive ever made.
The days that followed were to somewhat quite scary, knowing there wasn’t a doctor down the corridor if something went wrong, but with family and friends rallying around him, he got all the care he required.
This was one messed up, mind blowing journey, but one im proud to say we made it through, although we still have a way to go.
The statistics you see are 1 in 5 don’t survive the operation, 1 in 4 don’t survive the first 4 years due to rejection. With Danny being so young and fit his body is more likely to reject than an older weaker person, its such a catch 22.
Its taken me over 18 months to finish this story, some of the emotions I experienced are some I hope I don’t have to do again, or not for a very long time atleast, but if anything as siblings I think we are closer than ever.
No one knows what the future holds, for Danny or any of us for that matter, so take each day as it comes, you never know what is around the corner!
I have my own personal thanks to ALL the hospital staff, who were not only amazing with Danny but with family support too. I honestly couldn’t do your job and thank you all from the bottom of my heart.
So a quick recap for those that don’t know my story, I was given a Liver Transplant in the summer of 2019 due to having a rare liver condition called Wilson’s Disease and I thank my donor every day.
Since my transplant I have been doing very well health wise but like many in 2020 I have had the extra worry of catching Covid 19.
When Corona first hit the UK we had no idea of its full affects on each individual and how bad it would be for people like me who are classed as vulnerable. It was a very scary time and like everyone I was happy to sit at home and play things safe, I even wrote a blogpost about the possibility of being stuck at home until a vaccine was created.
At that time I was living out in the countryside which was great as I could go on long walks and not see a single person, also there is something special about being surrounded by nature. Time is never wasted when your wasting time out side.
Although I was content at home it was not what I had planned for 2020, this was to be my first year fully fit and well, it felt like the world was my oyster in January.
I run a small charity called Musicians Supporting The Homeless and this was the year we were going to expand and hit up some festivals. The charity raises funds mainly by putting on live music events and that money is then donated to Homeless Shelters, Food Banks and other places that support the most vulnerable in our society.
As you can guess all events were cancelled and any plans we had were put on the back burner.
The reason I am telling you this is because although that work is currently part time and not paid it is something I have been working on for 4 years and continued after becoming homeless myself and going through a Liver Transplant. Its a part of who I am as a person and its a very simple way of me giving back to my community and that’s important to me.
So we have been in and out of lockdowns and as a whole I had been very cautious whilst also trying to continue with my life.
I went on a few dates to pubs and restaurants knowing this was a risk but for my own mental state I had to weigh things up and there is no way I could have just stayed at home all year not looking to move forward in life. By this point we had been dealing with the pandemic for most of the year and the statistics had become clearer.
There is no way I would have been dating or anything at the beginning of the pandemic but at this point I had spoken to and read many stories of transplant patients catching Covid and only having mild symptoms.
There were also many transplant patients still working as key worker rolls and I thank them for their work, they had no idea how vulnerable people like us would react to the virus but continued working and thankfully I never heard one bad story. Just heroes out doing what they had to do, thank you.
The current government figures show that Covid now has a 0.66% death rate which jumps dramatically for people over 80 and drops even lower than 0.66% for people under 30.
With all this in mind when I see that a music venue I have worked with before were able to put on live events I jumped at the opportunity to organise something.
Within a week all the arrangement’s had been made, the local authorities had been and approved everything and we were set to have a charity event.
Again I was sat at home wondering if this was a good idea, although safety measures were put in place it was still and increased risk but it was one I was willing to take.
The night went ahead and for me personally it was so needed, a sense of achievement, a chance to see friends I hadn’t seen all year, the opportunity for people to listen to some live music and we could keep the charity alive a bit longer.
This event was on the last Friday before Christmas, cut to the Tuesday after and I had cold like symptoms coming on. Although it was very mild I went straight for a Corona test as I had plans to go to my sisters on Christmas day.
As I waited for the results the symptoms got a little worse, I had a slightly high temperature, a cough and a runny nose. All this time I made sure I stayed home and away from people as the responsible thing to do if you have any suspicions is make sure you don’t pass it on.
This was as my temp was coming back down.
I wasn’t surprised to get a positive result back but at the same time did instantly wonder how bad things were going to get.
My family were obviously very concerned and made me call Kings Collage Hospital, although I knew what they were going to say.
“Follow the Government guidelines and if it gets worse go to the hospital”
I’m very lucky and the symptoms have been mild as I write this on day 9 of testing Covid positive.
Did it mean I had to spend Christmas day and NYE alone, YES. Would I hold the event again knowing this? HELL YES.
I spoke to a lady who has become a friend of mine as we had our transplants around the same time at the same hospital and she told me how she had been being super cautious, way more than me and she still caught it.
With all this I’m not saying run out, be crazy and hope for the best. Its still a time to practise caution but you have to weigh up what’s best for your mental health as well. I could have spent the year wrapped in a bubble becoming very depressed then by a slim chance got it shopping or something as mundane and simple as that and that could be how I got it anyway. I will never know!
Anyway the vaccines are being rolled out now and I’m excited for that, I just want to get back to eating out and traveling.
I just wanted to share my story and the fact I’m alive. Please stay safe, continue to live your life and I wish you all the best for 2021.
To recap for those that have been following my journey and to give a brief description of my story so far for people that are reading for the first time.
I was born with a rare liver disease called Wilson’s Disease which basically leaves you with a copper build up in your blood and body this can result in liver failure and sever neurological effects such as lose of movement, speech and brain damage.
My diagnosis came in my early teens and as a result I spent a lot of time in and out of hospital – Kings Collage Hospital in London became my second home and to this day I cant thank the staff that work there enough. Such incredible people, I have so much love for them all.
My diagnosis lead to me taking medication for about 20 years which kept things relatively stable although I knew a liver transplant was on the table. At my time of diagnosis the doctors were pushing for a liver transplant which I was not keen on and said I would try the medication first.
Skip to a routine yearly trip to Kings Collage in 2018 (wow, it doesnt feel like two years ago!) and I remember it clear as day, the feeling I had when the doctor told me now was the time for the transplant. Even though in the back of my head I knew it was coming I really didn’t expect it then, in my head I was still fit as a fiddle.
In reality now when I look back I really had just been holding on for the past two years, I was tired, nauseous, had no motivation or a clear head most of the time.
I was on the waiting list for 7 months and on 30th June 2019 I had my fourth and final call to the hospital, this was the time it was finely going to happen. To anyone waiting for a transplant be prepared for a few false alarms, it may not happen but its good to have in mind and prepare your self mentally.
The surgery went well and about 10 days latter I was out of Hospital back with the family I was living with at the time. I will say now for anyone waiting for the operation, you will need support after.
I was looking to move out at the time and live alone, I’m so pleased this never happened. It really is a massive operation, I read its the second most invasive operation other than a heart transplant. Not sure how true that is but its defiantly no joke.
My Scar a few days after surgery.
My physical recover went well, taking very small steps each week using a fitbit to monitor my progress with the step counter, eating well and drinking buckets of water. My body was craving water and I made sure it had plenty, I think its important to give the body what it needs. Especially when its working so hard to heal and working out what’s going on with the new foreign organ that’s now made its self at home.
Because the organ is ‘foreign’ your body will try to fight it off, this is why younger people with a better immune system are more susceptible to rejection than older people who’s immune system has slowed down a bit.
The first few months the thought of rejection was always on my mind as was the tons of other side affects that could result from the immunosuppressants and steroids I was on. This still plays on my mind some days not so much now but its still there and the reality of it happening can be very real.
Any time I have a slight stomach pain or discomfort I wonder if that’s the end or am I sleeping too much, is it slowly failing! I think this is all very normal for anyone so soon after transplant as you have to get to know your body again plus your body is still changing and settling a year or so on.
Like I said my physical recovery has been very good so far and since my operation I have been on holidays, out socialising and basically living a ‘normal’ life apart from not being back at work.
All this obviously changed when Covid came round and like most ‘vulnerable’ people it was very frightening and still is really. I have being doing what I can to keep a social life and getting out when I can, I have just been assessing each situation and using what ever protection I can, gloves, mask, hand wash and all that business.
I have found there are two aspects of recovery, the physical side and the mental side of things.
The mental side is where I now feel I have hit a bit of a wall, to be told you need such a big operation and then to have your life put on pause while you are just left waiting day in day out for that one special phone call is defiantly enough to rock anyone’s world. Its like you have some of your freedom and independence taken away its a very strange time.
Not being at work for now 1 and half years has defiantly been hard and I’m really looking forward to getting back, it will feel like I have some identity again and more feeling of independence and personal achievement.
The problem is I have worked many jobs over the years but still haven’t found that one special area that I really enjoy and want to take further, after a transplant and now living in a post Covid world my next job choice is going to have to be well thought out.
Although seemingly things are going great, I now have my own flat, great relationships with family and friends, holidays, good food basically everything you need to be happy something doesn’t quite feel right. I will have days when I’m on top of the world and then other days when I wonder if it would have been easier if I had died!
I never used to understand depression or why someone who seemingly had everything would end their own life and I am in no way at that point before anyone worries but I do feel like I have a better understanding of it.
Dealing with depression.
When I do have my low times I try to get outside, when I’m in nature I feel at peace and happy.
Exercise and eating well is also important, I find in my head I can beat my self up a bit but if I have eaten well that day or exercised then that’s one less thing my mind can fix on.
The important step is talking to someone. I have just signed up for counselling which I always tell others to do, or I always suggest the importance of talking to someone that’s willing to listen. The good thing is that its available for free in the UK but I’m currently on about a 6 week waiting list.
I will stress that if you need urgent help or support it is available and I will put a contact at the bottom of this blog post. Please use it if you feel the need to talk to someone, even if it feels so small the relief you have after is what you may need.
The second part of 2020 feels like I have to concentrate on my self, I had started to write a letter to my donors family but that feels so monumental I can’t deal with the emotions just yet.
For anyone that has been following me you may have seen the series of YouTube videos I started called Danny Chats where I have a different guest each show and they talk about their experience of Wilson’s Disease and or liver transplants, I definitely plan to continue this later in the year and will always be looking for people willing to share their story so drop me a message.
I’m sure everyone asks the questions, why is this happening to me, would my life be different if I wasn’t born with a liver disease, how will I ever live up to a life that will do my donor proud.
The truth is I wouldn’t change my life at all, everything that has happened has shaped me into the person I am today and the fact I am out there living is more than enough to make any donor proud I think. Its a long journey, one that takes lots of strength and courage and anyone that has gone through it or is I take my hat off to you, you’re true warriors.
I also wish anyone reading this pre or post transplant the best of luck in life and if ever you want someone to chat with then find me on social media and drop me a message.
Thanks for reading, links to my Facebook, Instagram and YouTube are all bellow, feel free to share.
Soooo just as I thought my life was getting back on track a new challenge arises, the Corona Virus.
I was 7 months post transplant and I had just booked a trip to Austria for a few days, cut to a week later and Italy’s hospitals are overrun with people and the country is about to go into lock down.
I have friends in Italy and they were telling me how serious the virus was and telling me to take extra care. Taking this on board I ordered a couple of face masks and stocked up on hand sanitiser and I was using them if I had to go to any busy places.
At this time there were very few cases in England and as you could image, I was getting some funny looks wearing a mask, especially because of the neck piece I had got to cover it!
Although I had my worries and I was trying to keep up the routine of washing my hands and sanitising them, lots of people were telling me not to worry or panic, some of them people being the UK government.
At the time of my holiday the cases in the UK had risen by a good few hundred but Austria still had very few so I went on my trip, making sure I had disposable gloves for the airport and again I had my mask on in public places were possible.
I have never been in two minds about a holiday before, but I really had thought that it trough and took all the precautions I could along the way. Before my operation I wouldn’t have thought twice about it but I fully understand I have to be careful now due to being on immunosuppressants.
I made it through the airport and had a great trip despite all the tourist attractions shutting down the second day I was there due to the increased measures to contain the virus. I highly recommend a trip to Austria in the future, the history and architecture is incredible.
I came back to the UK around the 12th of March and as the cases of Corona Virus increased I decided I was going to start to isolate, which in all honesty wasn’t a huge difference to what I had been doing the past 7 months.
As time went on I think I had every emotions possible, there has been lots of fear and worry along with paranoia. I started to get what I thought was a sore throat at one point and of course I thought I had the Virus, but it turned out to be nothing.
I was just about to sign some paperwork to get the keys to my new flat which was going to be a huge part of getting my life back to ‘normal’ but that’s all been put on hold. This means I am still renting a room with Tina and her Husband Ian who is also considered a vulnerable person at this time.
Sharing a living space at this time especially before the full lock down was put in place can be very tough when it comes to controlling cross contamination. Tina was ill with a cold but obviously because of the worry of passing on the Corona Virus if it was that she spent 7 full days in her bedroom. Tina had her own cutlery kept separate, she had her own towels to dry her hands and would bleach everything after she used it.
It was a very upsetting experience for Tina not because of getting ill herself but the possibility of passing it on to me or her grandchildren was her biggest worry, especially because she had spent time with them the week before feeling ill.
We are over 5 weeks into a full lock down now in the UK and I have spent lots of time trying to comprehend what’s going on and make sense of it. With everything that’s happened in my life before I have always been able to see an end goal or find solace in seeing how people that have been through a similar thing to me have survived.
This is so far out of all of our experiences that there is really no one that can give a definitive answer to what the future holds for people that are considered vulnerable like me and possible you.
Over the last two weeks I have been coming to terms with the fact that I may not be out properly socialising and enjoying life’s full experiences until a vaccine is created.
This has been really tough and I can say I have been feeling really down about it but this is the worst case scenario and as long as I stay safe and all my friends and family stay safe and healthy then 18 months of isolating will all be worth it. I say 18 months because that’s what the UK government have given as a time frame, but it wouldn’t surprise me if it was longer.
I know that might be hard for a lot of people to come to terms with and I am FAR from an expert on viruses and virus control, to me this is just the worst case scenario and I think you have to be prepared for that.
Being in isolation for over 5 weeks I have found each day can be a challenge, but I have been trying to keep busy with something, this week it’s been baking, and my god do I love it.
I am such a foodie so making any food makes me happy especially when I get to stuff my face with it after.
Cheese twist bread with a garlic butter glaze.
I have also been keeping up with my exercise and weight lifting because I think that helps not only physically but mentally and mental health is incredibly important right now.
This next few months or even year are going to be a huge test for everyone mentally so you have to do everything in your power to keep yourself going and make sure you stay connected to people. I find video chats really help with this, I’m not someone that’s on them all the time but once or twice a week to see some familiar faces and have a bit of a laugh really helps lift my mood.
I am thinking about posting a blog on staying active mentally and physically over the coming year whilst also staying well protected from contracting anything.
Right now though I want to send you all a virtual hug and just let you know you got this and there will be a time in the future that this will all just be something we talk about or a story we tell to a younger generation at the pub, restaurant, coffee morning or what ever social places we will visit again some day.
Feel free to let me know your quarantine stories or thoughts on this post.
The date is 11th July 2019 and I have been told I can head home after 10 days of being on the liver ward at Kings Collage Hospital after a liver transplant.
The first thing I want to say is how my experience on that ward as with any NHS interaction was amazing. The staff on every level were great people to be around when recovering from any medical injury/trauma. The medical care is amazing but also the attitude of everyone around you in my eyes makes a huge difference. For example I had the same cleaner come pretty much every day and she had the biggest smile every time she came into the room. She would burst in and say “Hellooo Dannnnyyyyy” always in a fun, jokey mood. Things like this are a great distraction from what can be long slow days and there were so many staff like this that I looked forward to seeing every day even if it was just a the brief interaction. So a huge thanks goes out to all the staff on that ward at the time for playing a huge part in getting me ready to leave hospital.
I took the staff in a few boxes of chocolates on one of my regular trips back as a small thank you.
So back to the day ahead and my sister has travelled all the way back from Leeds to London to pick me up and take me home.
Its about 1 and half hours drive to get back home and my sister was taking things slow as to not hurt my still sore stomach.
I can’t describe the feeling I had when we got back into the countryside and I could see all beautiful colours it has to offer. I was so pleased to be back home, I know a few people were nervous about me leaving hospital but I didn’t have those nerves I was more than ready to get back into my own bed.
At this point I was renting a room at my best friends mum and dads house. Tina his mum is an angle sent from heaven if there is such a place! I was going to move out before my operation but was advised not to by the doctors.
Although that’s what I was advised I was still looking for a place and had one come up I would have definitely taken it. This however would have been a huge mistake, I thought I would be able to take care of myself when I came out, easy.
This defiantly wasn’t the case, I would have really struggled on my own, as you could guess or already know the scar area after just 11 days is still very sore and sensitive. Not only that I was still very fatigued and dosed up on morphine tablets.
The evening I got home I could see the people I was staying with had made a few adjustments to the house like a new stair rail to help make things easier for me. One of my friends who lives next door also popped round but I sent him home after about 2 minutes because he kept making me laugh and it was hurting my stomach.
Over the next month Tina was amazing (she still is), she would bring three meals a day to my room which I would eat on my chair. She had two large water bottles, one was always in the fridge and the other in my room. I can’t thank her enough for what I believe was her role in helping me recover so well and in good time, just like what I said about the staff around me at hospital. The people around you play just a big a part in the recovery as the person going through it, I can’t stress that enough. Their help enabled me to focus and build myself back up each day knowing I had a good ‘team’ around me.
The three best things about being home was my bed, the food and having a bath, all be it a shallow one it was still lovely.
On the 22nd July (22 days after the op) my youngest sister dropped me round her Fit Bit so I could monitor my progress. By this time I was taking a small walk around the field out the back of my house. This was a very short walk that would normally only take about 5 minutes, however for me it was taking around 20 minutes still. Looking back at my fitbit data now I was doing on average of about 3000 steps a day back then. There was a few days shortly after that I did 5000 but then would do very few over the next two days. Maybe I was over doing things a little some days! Either way I was making progress and as it was summer it was just nice to be out the house.
Two days taken from my Fitbit, notice the sleep pattern 4x awake/9x restless hours.
As I mentioned I live out in the countryside and am sooooo lucky to be surrounded by fields and woods that over my time of recovery I have had the opportunity to explore and spend lots of time enjoying nature.
The days went by slowly and for about 2 months the highlight of my week was the trip back to the hospital for blood tests and to check in with the doctor. I was lucky to have hospital transport pick me up and drive me home each time and I also had the same driver pretty much every week. Another amazing member of the NHS staff who would buy me something from the Caribbean food shop that she would visit while waiting for me to have my appointments.
After about 2 weeks of being out of hospital I was off the morphine tablets and would take codeine when having to go in the car as it was still slightly uncomfortable.
This is the full list of medication I was on when leaving the hospital.
Advagraf 10mg
Predinsolone 20mg
Omeprazole 20mg
Lactulose
Oxycodone 5mg, 2 times a day.
Codeine 30mg as needed.
Magnesium powder
As with most drugs some of these come with side affects, I have added a picture of how long the list is for Advograf. Its not a great example if you want to read them all as the list is too log to get a close up picture that fits it all in. To be honest if you need to take it to keep you alive then the side affects are irrelevant and just worrying and I would say there is enough to worry about so just focus on the task at hand. I would stress still if you do get any side affects tell your team right away as sometimes things can be sorted just by adjusting the dosages of meds.
There are some side affects that you cant control and for me that was not being able to sleep then when I could sleep I would get sleep paralysis. Prednisolone is a steroid that can commonly cause mood swings, lack of sleep, nightmares, hallucination and increased appetite amongst other things.
I only really had the sleep issues and because of that I got the opportunity to whiteness what I would say was one of the best sunrises I have ever seen. I was waking up around 5am most mornings and going for a cup of tea out in the filed behind my house to watch the sunrise and this is why. (see picture below)
After about 8 weeks I was off the Prednisolone and my Advagraf dosage was dropped down slightly, then it was dropped again after a few more weeks to my current dosage of 9mg.
On the 20th of September so roughly just over two months after my operation I went on my first holiday to Cumbria which is an absolutely stunning part of the UK. I had been working my up to this as we did a hell of a lot of walking hitting 20,000 steps on one of the days. This did hit me hard though and of an evening I didn’t even have the energy to help cook dinner, I was crashed out on the sofa. Still it was a really well needed break and another milestone reached, plus I like to travel and explore and its another place ticked of the list.
Cumbria UK.
The weeks that followed I was finding my energy and everything was returning and I was frequently out on little adventures with a rest in-between. I did have very bad migraines on and off for about 4 months but over time they came less and less and now I rarely get one.
Writing this now I am 9 months post transplant I have been on a few little holidays one of them on an aeroplane to Austria for a long weekend, I was ready to start getting back to work and was about to move into my own flat.
Along comes a world pandemic!
I will say I have been very lucky not to have any complications after my operation and I have also done the my very best at recovering. Like I mentioned I did a lot of walking and still do, I eat a balanced diet with lots of fruit and veg topped up with cake and chocolates. I have been slowly building up my muscles again by doing light weights most days now and I still drink lots of water and green tea. I would say physically I am pretty much better but then there is also the mental issues to overcome.
This I will cover in a later blog though.
Thanks for reading as always feel free to comment or add me on social media for a chat, I love hearing everyone’s story and have been inspired by lots of people that have reached out already.
So quick re-cap, I have woken up from the operation and been transferred from ICU to the liver ward at Kings Collage Hospital.
At this point a lot of the wires and tubes are taken off and all that was left was the catheter, a canular in my arm and a drainage bag on each side of my stomach below the scar.
Scar 6 days after op, you can just see the drainage bags below.
I was placed in my own room with an on-suit bathroom which was great but the only problem was it was one of the hottest summers we have had in the UK for a long time. The room was ridiculously hot and the window barley opened, in temperatures like that sleeping and resting comfortably would have been almost impossible.
Luckily my Dad was on hand and he managed to find a shop nearby that sold fans along with a few other bits to make the stay a bit easier.
For the next couple of days I just lay in the bed with lots of painkillers running through my body, as you can imagine my memory from then is a bit hazy! I do remember not being that comfortable on my back and the drainage tubes being uncomfortable if you tried to move about.
I’m sure I didn’t get much sleep to start, the nurses are monitoring your temperature, heart rate and what ever else every few hours and that happens all the through the night.
Within 3 days I was up and walking, just and I could transfer myself onto a chair.
As I had mentioned the drainage tubes were a bit awkward but seeing as I was able to move about it was time to go on adventure. My sister wheeled me outside for some sunshine and fresh air which I could only image was one of the most nervous thing she had ever done in fear of tipping me out or something.
She worries like that, not the case when she had her appendix out, I was flying her around in the wheelchair and nearly tipped her out by a lift. 😬
Over the next few days there was a lot to process and go through, I had visits from doctors, dietitians and mentors – people that had been through the transplant process already and are back out enjoying life again.
Now one of the medications I was on called Prednisolone (a steroid) is prone to make people angry or emotional which is why when the dietitian told me I couldn’t eat prosciutto ham any more I cried. It had nothing to do with that being the worst thing I had been told since going through this whole process. 😅
The funny thing is the day before and that morning I had eaten a pack of that ham wrapped in cheese from the shop in the hospital, so I was off to a great start.
Here are the foods I was told to avoid.
Cured Hams – Unless cooked on pizza ect.
Sushi.
Un-pasteurised eggs and dairy products.
Raw Steak – supposed to be well done if I have it.
Grapefruit
Saville Oranges
Lime Juice
I’m now 7 months post transplant and I have to be honest and say a lot of those things have passed my lips! I mean I ate two things on the list before I even knew there was a list.
I do try to avoid the above and most of the things I had were by mistake, I’m still alive so its all good.
There has only been two times I’ve cried during the whole transplant process that was one of them and the other was on the 9th July (8 days post) when for some reason I wanted to listen to the Verve and have a good cry.
I don’t know if they were tears of joy, sadness, relief or what, I’d probably say it was a mix of everything but it was well needed.
I also wrote on my Facebook that this was the toughest few days since the operation, having hallucinations and trying to reducing pain meds was making things uncomfortable . I was still very positive at the time and each day was a step closer to leaving.
The biggest and best moment for me was having the drainage tubes taken out, well I had one out after about 5 days and the other 7 days. That was soooo nice, life was going back to normal and soon I would be able to sleep on my side again.
Another big step was doing a poo! Not nice to have to talk about but obviously a huge part of getting released back into the wild is having all your bodily functions working.
A mix of drugs like morphine and codine will soon bung you up and lack of movement doesn’t help much. I was so keen to go properly I was drinking all the lactulose I could get my hands on. This didn’t work so a few other methods where tried and eventual it was all good and another thing was ticked off the list that would get me out.
Once this whole transplant process is over there is no place you haven’t poked or prodded trust me.
From the first day I was aloud to walk around alone I was taking a trip down to the shop every morning then eventually having 5 minutes outside in the morning sunshine as well. The walk normally takes about 8 minutes there and 8 minutes back but for me it was more like 20 minutes plus the time outside so that would fill about an hour. The rest of my time was spent in my room shuffling from my bed to my chair then back to my bed then back to the chair.
One of my trips outside, you can just see the drainage bag again.
In the items my Dad got at the beginning was a colouring book and pencils which was great for filling some time and also trying to concentrate on not shaking was good for my dexterity. My hands were quite shaky after the operation but have calmed down a lot now.
The rest of the free time I was watching streaming sites and one evening I watched a stand up comedy show which was funny but also painful. Every time I laughed it really hurt my stomach but I had to watch it all.
Filling in the time with my trusty fan next to me.
I had visits from my family everyday which was really nice but exhausting after a short time, like I said it was lovely to see them and I thank them so much for the boring trips. Although my youngest sister popped in then went to a casino in London after. She won a load of money so she was super pleased.
On one of the later days two lovely middle age ladies came in to my room, I’m terrible with remembering names and I have forgot theirs which is bad really as we have seen each other since then. They had been through the transplant process them self and it was lovely to hear their stories of all the things they had done since. Holidays, work, family get together’s, they had a full life to live which was really encouraging especially after hearing about all things you can’t do/eat and all the possible side affects from the medications they have put you on.
I met with the mentors a few months after my transplant.
I was told I would be in hospital for 14 days but by day 9 I was keen to go home, I was mobile, my meds were stable and I needed some decent food.
Day 10 someone said I should be able to go home in a day or two but when the main doctor came round with the transplant team he asked how I was feeling and I said “ready to go home”.
Hey said that’s great you can go and just left the room, I thought he meant in a day or two. I told my sister who was working in Leeds and she said she will sort work out so she can pick me up.
I was doing some colouring when a nurse came in to give me a discharge letter and told me the pharmacist would be along soon to give me my medication to take home.
‘Oh shit……. Im actually going today 😁’
I called my sister back up and told her so she left Leeds and did the log drive to London by which time I had been pacing the halls waiting to get home to my bed and home comforts.
I wasn’t nervous to be leaving the hospital I was excited, I think my close friends and family were more worried than me.
When my sister got there I did my best to say by to some of the amazing staff that had looked after me and I cant stress enough how amazing they all were. So friendly which really makes the stay a lot easier, it’s so important when you’re in recovery to be surrounded by good people.
My sister took my bags as I was instructed not to lift anything heavy for two months and we took a slow ride home , again my sister petrified she is going to hurt me in any way.
That was my hospital experience and it was 7 months ago so there is probably things I have forgot. So If you have any questions please give me a message on social media.
So to recap I’m on my fourth call to Kings Collage hospital in London it’s the 1st July and I am about to go down to the operating theatre.
At 8.15am I was stood outside the operating room talking with the doctors going over the final details. I don’t think I was nervous or worried at all, just had to keep my mind on the task in hand, going to sleep. I had the easy job of just going to sleep while the surgeons did all the hard work and as my Nan said to us all at the Christmas dinner table. If anything goes wrong I wont know I will be asleep!
I have to admit the reason I wasn’t worried was because I have full faith in the Doctors at Kings Collage Hospital, lucky for me its one of the best Hospitals in the world for Liver Patients. I can’t thank or praise them enough for the great work they did to/for me, they have saved my life twice now and to them its just part of a days work. They really are incredible.
Anyway back to the story….
I remember walking into the operating theatre and it felt very cold, especially as all I had on was a gown. The room was full of people all doing something in preparation to cut me open, I remember laying on the operating table which was heated so it felt lovely. I’ve been sedated lots of times over the years and I always try to fight it or try to remember the exact point I have gone under but it ever happens. Its just one minute your there the next you are gone, into a deep sleep and out cold.
By 9am I was fully sedated and at 12.45pm my sister had a phone call saying they had taken out my old liver and the new one was in place, they told her that they were connecting the vessels to create blood flow.
She received another call at 2.45pm to say the blood was flowing and they were beginning the plumbing work to put me back together again.
They was finally done with me at 4.27pm and I was in ICU for 4.50pm, my sister said it was horrible seeing me with all the tubes in and me being so lifeless but I had asked her to take a photo and here it is. I think it looks like I’m pretending to be asleep!
Fully sedated after my Liver Transplant.
My sister had been told to go home and come back at around 8am the next day (2nd July) when the sedation should have worn off. So she went home and had a well deserved bath and into her own bed for what she thought would be a good night sleep.
At 8.25pm my sister received a call from the nurse saying my body was fighting the sedation and the safest thing to do was wake me up. She drove all the way back to the hospital which is a long hard drive just to be there and to be honest I can barley remember it. The only thing I remember was asking for food at some point, an Ice Lolly to be precise and below is me enjoying a Calippo.
Less than 24hrs after my operation.
ICU from what I remember was a fairly hectic place, lots of machines bleeping and nurses rushing about and all I was aloud to eat was ice cubes for a while until I got my hands on a trifle.
I cant really remember what I thought about all the wires and tubes, I don’t think I was to bothered to start. I do remember the catheter being weird but I think I could use one on long drives. You don’t even know your going for a wee it just happens then some poor sole has to come and take it away.
My Dad came to see me In ICU and he said the the change in my skin colour was amazing, I had lost the jaundice yellow shade and was back to a ‘normal’ colour less than 24hrs after the operation. The body really is an amazing thing and the liver is so underrated for importance of keeping us healthy,it really is an incredible organ.
The next day, 3rd July I was taken from ICU to the liver ward and given my own room.
This was when my work would have to start, I had no idea how the next 14 days where going to be. All I knew was that’s how long they said I would be in for and it was going to be an adjustment for me.
This will be my next blog post, I will try to get it up faster than this took.
Please feel free to add me on social media or check out my Youtube channel, I’m planning something exciting for that soon.
It seems like good planning on my part to be writing this post talking about my year on New Years Eve but it defiantly wasn’t. Well It wasn’t something I consciously thought about but life sometimes works things out for you.
Re-cape
I had been living with Wilsons Disease, a condition that can cause damage to the liver. I knew a liver transplant was always going to happen and December 2018 was the time that the doctors thought it was best to get me on the liver transplant list.
You know in films when someone gets bad/shocking news and their focus goes and the sound around them just becomes a background noise as their brain tries to process everything that’s going on. Well that’s real and I had what felt like a long train journey back home from Kings Collage London to think about everything. I wasn’t really worried or scared about having the liver transplant I was more worried about telling my family and the people I was living with (my adopted family). I knew this would cause concern for them and would inconvenience their life as much as it would mine.
At this time I was just about to move into my own house after renting a room at my ‘adopted families’ house for the past year. I was advised to sign off of work before the operation because if I tried to do it after the operation when I was recovering then I would get no financial support. After the operation I would be classed as ‘Fixed’ so although there is a six month recovery process they would expect you to work. So getting signed off by the doctors before the operation means they can easily extend that after the operation for your recovery giving you financial support when you most need it.
A Year Of Two Half’s.
The first half of the year for me was waiting for the phone call.
I was told for my blood type there would be roughly a 6 month waiting list, so in my head I was planning for a year out. A year dominated by this procedure.
The first few weeks were a bit crazy trying to process everything mentally while also having to make all the necessary adjustments in my life.
My family had all been talking behind my back and on Christmas day 2018 they gave me everything I would need to make my preparation and stay in hospital easier. I got a tablet to watch Netflix and all those sites on, a massive comfy dressing gown, a bag to keep packed 24/7, mobile battery charger and a load of other bits. It was a very emotional Christmas day but one that would help me realise how many special people I had around me.
Within a few days I was going through the process with the hospital, I had to go and stay in London for a couple of nights and each day I would have a load of test and evaluations done at Kings Collage Hospital. Not only did they make sure I was physically ready to have the transplant they also had to make sure I was mentally ready and that I would be ok dealing with everything after the operation. The hospital staff at Kings were amazing, they spent a lot of time explaining everything and really made me feel at ease. I have always trusted them at that Hospital and can’t thank them enough for what they have done for me.
Everything went really well, I signed all the necessary paper work and was told the to keep my phone on and with me as I could get a phone call anytime and I was also on what I called house arrest. I was advised not to go more than a couple of hours away from home in case they called.
Luckily I live (at the time of writing this) in the middle of the countryside, its absolutely stunning. I have always liked being outdoors and seeing as the doctors told me to keep as fit as possible I thought it was great to go for walks everyday. I even got myself a half decent camera to play around with on the walks.
Photos taken by me in 2019
This time out side and playing with the camera gave me a lot to focus on and was always a great excuse to keep me busy for the day. I found it very important mentally to try to have some focus and achieve something each day. Although the idea of having a year of work sounds fun its not unless you can travel or something like that.
Anyway lots of walking along with looking after my sisters little farm really helped me to get through the days. Having the animals at the farm dependant on me was also a nice thing mentally. When you have things that depend on you it gives you more purpose, this is also why I think I ended up becoming addicted to buying house plants this year! (disclaimer – I always liked growing things anyway its not really a new hobby but I do have way to many plants if there is such a thing)
Just a few of my plants
The people I live with, my sister and I all grew fruit and veg during the summer which was also great as I actually enjoyed it eating, another part of staying fit/healthy.
The first phone call came only a few month in to the year, 11th March to be precise. This was to be the first of 4 calls and its not uncommon for this to happen to transplant patients. Mentally this can be very hard but for me the hardest part was the not eating from the time of the call to the point they say you can go back home if you don’t have the operation.
I remember seeing the no caller ID come up on my phone and just presumed it was some kind of sales person. The words that came out my mouth was “Oh shit” when the doctor said get ready to come in. She laughed and asked if this was the first call i had been given, she could probably tell by my reaction. 😅
I then had to wait around for the ambulance to show up, because we live in the middle of nowhere the ambulances could never find the house so we would tend to hang around looking out the windows. I wasn’t and never had been a big tea drinker but after every call the first thing I would do is make a cup of tea, this must just be some kind of English reaction to dealing with big news!
This trip was uneventful, we had the sirens and lights on all the way to the hospital only to get to the car park and be then told on the radio to go back home. Luckily they gave me a lift back and we even stopped to get me some food so it wasn’t a completely wasted night.
The next call came a month later on the 18th April, I know all this because my sister has records of it all. We got to the hospital at 11pm the liver had arrived, I had signed the consent forms and all the pre-op assessment were done. After inspecting the new liver they decided it wasn’t in good enough condition to warrant doing the operation so we were sent back home at 1.05pm on 19th April.
Me ready and waiting for the operation.
Life went back to looking after the animals, long walks and more photography until 8.15am on the 16th June when I got the third call. Third time lucky was what everyone was saying as I had my cup of tea. I wasn’t getting my hopes up, until I was laying on that operating table there was always a doubt in my mind.
Another long day, more tests and pre op rituals and again the doctors were not happy with the replacement liver so we had the long drive back home in the early hours of the morning. My sister insisted on being with me at every trip despite working 200 miles away in Leeds and sometimes being awake for 32 hours, she would still drive us both back from London usually stopping for food. She really was a star during this time and getting back from the hospital would have been a lot more of a pain in the bum without her.
The 4th and final call came on 30th June at 9.30pm, I arrived at Kings around 11pm and my sister got there about 2am, after spending the night in the chair next to my bed she went for some fresh air in the morning and on the way back saw liver being delivered into theatre.
This time it was really happening……………(part 2, the operation and recovery coming in the next blog post)
Oh, something I forgot about until I was just looking through photos was that the whole time I was waiting for the operation I was having to inject myself everyday in the stomach with blood thinners. This was something I got used to really fast, luckily Im not scared of needles and have a fairly high pain threshold, the annoying thing about it was having to do it at the same time every day which for me was 3pm but again I soon figure it out and was happy to do it where ever I was at the time.
Just some of the needles I got through in 6 months.
Thanks for taking the time to read, I hope this helps in some way please feel free to share your stories with me.
Dannys Story - Wilsons Disease & Life After A Liver Transplant 