And so the time has come...

It has been just over 8 months since T-Day and I have had a rather rocky journey to recovery. Many have said that I will not feel completely 'normal' until around about the 1 year mark. However, I have been up and about and pretty stable for a while now and so the time has come for me to really regain some sense of normality.

Tomorrow, I go back to work!!!

I am equally excited and terrified all at the same time. 

Excited because I will be able to be around people in a more social environment, in a place where I can interact with others and have conversations with a variety of people rather than the select few who have been around during my time off.

I'm also excited to know that, even though it is going to be a slow start, I will once more be contributing to the household. I will have some kind of purpose and will have a reason to get up and get myself ready in the morning.

I'm terrified for some very silly reasons. I have not been on a bus in probably 9 months. I've had times where I've found crowds and small spaces really overwhelming and a bus at rush hour is just that. And it's summer, so it'll be a hot, overcrowded, noisy place. And how much does the bus even cost now?!! Ahhh! (I really should have done a trial run...)

A second terrifying prospect is that there have been a number of changes at the office since I left and I actually have no idea where I fit into the business now. Thankfully, I know that I am much more capable of working. My energy levels are much improved and my brain functions a whole lot better now that I have a working liver that is getting rid of all of the toxins. I'm also pretty much pain free thanks to the pre-gabalin so no longer take sleep inducing, brain muddling high strength codeine every few hours!

At the end of the day, getting back to work is another challenge to take on and I will go with all of the gusto I now have :)

Keep Smiling :)

From this...

To this! Thank you again to the wonderful person who donated and their family who agreed for the donation to go ahead

A Nautical Adventure

Thursday 29th April 2016 marked my 6 month liver-versary. It has been a stormy 6 months and one that I feel can be summed up, probably not briefly, in a sail...

Before the transplant, I was sailing in a sheltered setting. Somewhere like Plymouth Sound. The waters can get choppy and the sailing can be rough but it's nothing like offshore sailing. For me, the transplant was a beacon of light that was on the horizon to head towards and I believed that it would lead me into a harbour, into calm waters where the difficulties would end. When I got the call in October, I truly felt that the transplant would signal the end of all of my medical issues. However, when I reached this beacon, I sailed past it and realised that it was a light marking a breakwater and that I was heading into unknown waters. Near the breakwater, the waters were choppy and because I was't expecting it, I lost control. The waters settled and yet because it was all so unexpected, being in this wide open space with no idea what to expect, I felt helpless. Then, in December, the sun came out. The sea was kind and conditions were good. I was sailing and it felt awesome. I truly felt as though I was recovering well and would be back to my old self in no time. The sea could throw anything at me and I would soon be able to get through the storm. January was similar. There were some moments when the waves were rolling and uncomfortable and a few choppy, nasty moments but they passed. February was much crueler. I felt as though I had sailed into the middle of a gale force storm. Nothing was going how I had expected and I let go of the ropes, I was completely out of control physically and emotionally. The whole experience that I had been through hit me all at once and it felt like everything was falling apart around me. I was alone and too far from land to reach help. Everything hurt and nothing could be fixed. Occasionally, the seas would calm for a moment but never enough for me to recover and get myself centred in order to regain control. A few weeks ago, feeling lost and hopeless, I reached a headland and, sailing around the headland, I became sheltered from the storm. I was able to breathe and relax and take back control. Since then, there have been some slight choppy moments but I the rest has given me the strength to take on these moments with a more careful and considered approach. I am brighter and beginning to feel as though I can take to the seas again and that now, I will be better equipped to take on the challenges that the sea presents. Each challenge I will learn or re-learn skills and so develop and grow stronger. I know now that there is a vast ocean out there that will be filled with storms of varying strengths but it will also have moments of completely blissful smooth sailing...

Keep Smiling :)

24th March

So it's the 24th March. Today marks one year since I received the phone call from the Royal Free Hospital to let me know that I was being placed on the transplant list.

It was mid afternoon at the office when the phone rang. I knew immediately what it was and yet nothing could prepare me for the emotions that swept over me. Having waited an extra 2 weeks after my assessment, I was on tenter hooks wondering whether or not they would be listing me or not. When the Transplant Co-Ordinator gave me the news, there was nothing I could do to stop the tears of relief. I was then standing in the area of the office where the lifts are, in a kind of no-man's land, tears streaming down my face with no idea how I was going to be able to get back to work. My HR manager saw me and I was able to tell her the news. She sent me outside to cool down and have a chance to breathe.

So there it was, the decision had been made. All I had to do was wait for the phone to ring!

This past 12 months has been a torrent of emotions. Waiting for a phone to ring has never been so hard. Receiving a false alarm call in which hopes were lifted and then crashed leaving myself and my family left by a hospital bed in London being told to make our way home. Coming home from that first call was truly heartbreaking but at the same time it was a reminder that I was being thought about for transplant at each opportunity meaning that any day now could be the next call. Just 6 weeks later, that second call came. I didn't believe that the surgery would go ahead. Even when I was prepped for surgery and had been given a dose of temazepam to calm the nerves, I still believed that I was going to be sent home. I couldn't believe it when, just 8 hours after the call, I was outside the theatre waiting for the staff changeover so I could go in for the transplant that, by that point, was so very needed.

Here I am, 12 months after that listing phone call, well on the road to recovery and planning the rest of my life!

If anyone has any suggestions for exciting things to do or places to see in my healthy future, please feel free to message me or leave a comment!

Keep Smiling and Happy Easter :) 

A Methylprednisolone Adventure...

Right, let's get back to business!

It's one week post transplant and I have just been informed that it is likely that I have rejection and will be spending the next 3 days on very high dose 'mega roids'... I have been warned by the consultant that I am in for a rocky night. 

It started horribly. I felt a catch in my throat and started coughing uncontrollably. I have never felt so panicked and in so much pain. I genuinely felt as though my wound was going to open up and my insides would come spilling out. There was no need for the call bell. It was immediately obvious to the nurses on duty that I was in distress and they were at my side swiftly. The lovely Irena stayed and held my hand to comfort me whilst another nurse rushed to get some oramorph. Once the coughing and pain had settled, I apologised profusely to the other patients on the ward for making such a fuss and waking everyone.

As warned, getting to sleep was proving difficult and the combination of all the meds was starting to mess with my head... And so the craziness begins...

Some part of my brain decided that the best thing to do to try to sleep would be to sing some lullabies. As a child, my mum would often sit on the landing outside mine and my brothers bedrooms and sing us to sleep. In my drug addled state, I believed that if I was struggling to sleep, everyone else must also be having difficulty so I should follow my Mumma's lead and sing. I went through the folk songs mum used to sing and found that I could only properly remember one, a beautiful lullaby called 'John of Dreams'. Once I'd stopped being able to remember that one, I moved onto musicals and worked my way through 'Hushabye Mountain', 'Stay Awake' from Mary Poppins and 'feed the Birds'. I'm not sure how that last one counts as a lullaby but I'll blame the drugs! Something switched and I realised that actually, I might be keeping the other patients awake and I wasn't  succeeding in singing myself to sleep. Thankfully, I managed to doze off briefly. 

At around 4am, I was woken for blood tests. This is when the fun really started...

Once more, I was struggling to get to sleep. I popped my iPod on with 'Pure Chillout' and closed my eyes in the hope that the music would help me to drift off. I started tapping my feet in time to the music. Then I waved them from side to side. I found that as I waved my feet, my bed began to move. I then found that I was able to steer my bed using my feet and so off I went on a little adventure.

I drove myself to the hospital lift and then down to the exit. I headed towards Belsize Park tube station, down the hill, past the lovely little boulangerie which smelled delicious as it was morning and just opening... Mmmm croissants! Into the tube station I went (still in the bed), through the barriers and down in the lift to the platform. I happily steered the bed onto the train with no stranger looks and people behaving as though this was an everyday occurrence. I knew exactly where I was heading and got off at Holloway Road. Left out of the station and across the road, I was in my favourite shop, Vivien  of Holloway. Caius had arranged a private appointment. It was just me in the shop, lying in my hospital bed surrounded by wonderfully helpful (as always) Vivien of Holloway staff. They had been instructed that I could have any outfit of my choice but that I wouldn't be able to try anything on because of my condition. The lovely ladies spent ages picking up dresses and flourishing them in front of me so I could choose. I was in heaven! It then transpired that I was there to choose myself an engagement outfit! I don't remember making a choice but I left the shop with a goofy grin on my face and steered myself back to the hospital...

I woke feeling euphoric until I realised that I wasn't engaged and didn't have a new Vivien outfit, nor was I likely to be wearing any of my Vivien clothes for some time... I drifted off again and experienced a very odd hallucination...

I was at a friends house in Modbury where my cousin Richard and his fiancé, Alice, were showing off their new gold glug jug. They were saying how much better it was than Gill and Rob's one because it was gold. They were very proud of their gold glug jug. I then found myself discussing glug jugs with mum and saying how much I'd always wanted one. She told me that she had my Grandad's glug jug and that I could have it. At this point, she presented me with a ceramic tray...

The conclusion from these strange, slightly out of body experiences, is that I think I'm just a little bit odd!

Keep Smiling :)

And it was all Yellow...

Wednesday 4th November. I woke up feeling rough. Not rough like sniffly, stuffy nose rough; rough like I couldn't move.

The lovely physios came round to see me quite early and I said that I really didn't feel like getting out of bed and that I had probably overdone it the day before by spending most of the day sitting out of bed and walking around. From my experience of these physios, they usually do quite a bit of encouragement to try and get patients out of bed, particularly if they've already shown signs of being quite mobile. On this occasion though, they were quick to agree and said they would drop by later in the day to see how I was getting on. I was completely and utterly zonked. The doctors came round as usual and took bloods. I managed to sit up a bit and watch something on my iPad but I think i kept drifting off. 

At some point during the morning, the doctors started taking about a biopsy and trying to fit me in that day. To my knowledge, it wasn't unusual for a biopsy to be requested. I started to hear mutterings of slight concern. My bloods results were doing well on the whole but my bilirubin had taken a large spike which was a bit unusual as usually all of the liver function tests go awry if there's a problem. 

At one point the student nurse came round to see me. She was a great laugh- she seemed a little bit scatty and was always very talkative. She came round and dropped a bit of a bombshell. There had been a lot of fussing up to this point but I though this was completely normal until she told me that everyone was really worried about me. She then told me that I was looking very yellow... I hadn't been up to moving around so hadn't even seen myself in the mirror up to this point. Then I panicked. I took a picture of my eye to see how yellow I was and it wasn't a great result.

I've seen worse but a week after transplant, I was certainly hoping for much better than that!

I can't quite remember what order the rest of the day happened in. I know I reluctantly had some lunch. After lunch, I had visitors. The wonderful Sarah who I haven't seen for years but went to university with came to say hi. We had a really lovely catch up but the poor girl spent most of the time crying. I think this happened before I'd taken the photo of my eye as I didn't realise myself how bad I looked. Caius was being careful not to overload me with people and had a coffee with Abi whilst Sarah was with me. Once Sarah had gone to work, Abi and Caius came up and I decided to show off by walking myself to the toilet and back. As I came back, one of my drain bags must have overfilled and it leaked all down my leg, soaking my gown and leaving a very embarrassing puddle on the floor. I felt completely humiliated and burst into tears. I was exhausted from just a short walk and was now covered in nasty drain fluid and standing in the middle of the ward. Thankfully, the lovely nurses were on hand to clean me up and get me back into bed and Caius and Abi were good enough to have a little wander whilst I was being cleaned up.

They got back and I enjoyed more catching up. Abi had travelled from York to London to come and visit and had arranged to stay for a night at her parents so she could check up on me again.

I also had a visit from the delightful little Katie who will always and forever be, little Katie. She's like a little sister to me and I have watched her grow from the girl who stood on tables in cafes to sing to everyone, to a beautiful, confident young woman who is finding her place in the big city. 

I seem to remember that it was also on this day that I took my first look at my wound. The surgical team had been checking on it daily but I hadn't yet had the courage to take a look. Surrounded by friends, I decided it was time! It was a shock but i was also fascinated by it. I had been stapled up so there was something very Frankenstein-y about it. Looking at it, I couldn't quite believe that it was the same body from a week before.

The bruising across my lower abdomen had been there for some time and was caused by my insulin injections. The round thing on either side were my drain bags. When major surgery takes place, a lot of fluid is put into the body and needs to come out somehow... in this picture, I have recently had fresh, clean bags attached.

I think it was after dinner that I was taken off for my biopsy. Having heard mutterings all day about it with some debate as to whether it would take place on this day or the next morning, everything then seemed to happen very quickly. I was taken off and prepped for the op and started to panic. I'm not good with needles or surgery and get quite anxious about procedures. I usually request sedation and did so at this point. They told me that because I had dated recently, I wouldn't be able to have sedation as it would be dangerous. I sobbed and begged and sobbed some more. One of the team came down to see me and told me how important it was for me to have the biopsy done as soon as possible. It was at this point that I realised the seriousness of the situation. The team were concerned that I was rejecting and would need to treat this as soon as they possibly could which meant finding out what was wrong as soon as possible. They had been working hard all day to find a slot for me and this was it, they really couldn't wait another day!

The biopsy didn't take long and I will try to write a detailed separate post about it.

Once back, I had my family around me and I could see there was concern. I was very jaundiced and definitely not as perky as I had been the day before. However, I still managed to smile and have some silly time...

Getting into the Christmas Spirit with the reindeer antlers from Mumma!

This probably shows the extent of the yellowing a little better... yes, I really was that shiny, kind of like a lemon really!

The docs came back later that day and although they didn't yet have the biopsy results, they were keen to treat me for rejection. This meant 3 high doses of IV steroid over 3 days with the first dose to be given that night. I was warned that I was in for a rough night. The steroids would most likely keep me awake, make me hyper-active and probably hungry. They weren't wrong...

Keep Smiling :) 

The 'F' Word

On Monday 2nd November, I woke up in a bit less pain and the nurse encouraged me to sit out in a chair. This took a lot of help from nurses to get me sitting up, swinging my legs around and flopping into the chair. It was thought that this would help to get the bowels moving as I had been very static for 5 days. It didn't help hugely but it did give the nurses the chance to give me a better wash and to change my bed properly without having to roll me around. 

A bed had been found for me on the recovery ward and so I was due to move later in the day. Having not had any sign of bowel movement, I took the plunge and agreed to an enema. This is not a pleasant experience and all dignity goes out of the window! After having the enema, I felt 'movement' quite soon after. The nurses bought out 'the chair' (a commode)... unfortunately, not much happened - I just lost the enema juices. This is just delightful isn't it!! Only telling it like it was! 

Shortly after, I was moved to the ward. This is where we get to mum's favourite bit...

I was lying in bed having just got to the ward when the magic happened. I farted. We were all absolutely delighted and no one more than myself! I let everyone know and didn't hold back. Then it carried on. And on. And on. It went on to the point where I was no longer laughing but was starting to panic that it might be more than just a fart (it's very difficult to tell when you're on an air mattress)... I had to try and calm mother down so that she could get the nurse to come and check. Again, dignity was half way across England by this point!

The first nurse that I met on the ward was the lovely Sophie. She was about my age and very softly spoken and gentle. She was also very efficient. One of the first things I had asked when I got to the ward was if I could have my hair washed. After the trauma of the fart incident, Sophie made sure that my hair got washed which made me feel a hundred times better. As someone who tends to wash their hair almost every day, waiting 5 days to have it done was torture and it felt heavy and disgusting. Not only that, but the bright blonde was well overdue for a touch up but that wasn't quite something the hospital staff could stretch to!

During the day, I managed some small bites of food but I had a problem that not many people seemed to understand. My senses felt completely overwhelmed, particularly my sense of smell. This meant that I was really sensitive to smells and flavours. Any perfume that was being worn was too much, hand creams were really strong and food was just a step too far. All I wanted was plain rice and no-one could quite comprehend this! The first food I asked for was late in the afternoon and I requested weetabix with hot milk and a bit of sugar. Even that was too strong smelling and also too hot so by the time it was cool enough, it was just a stodgy mess that had gone slightly sticky... not the greatest success. Caius bought in some of the microwaveable rice packets for me and that was exactly what I wanted. The nurses and catering staff were completely befuddled by this and kept trying to offer me gravy or sauce to put on the rice. Nope, plain rice was all I wanted. 

Later that day, I was visited by the physio team who showed me a technique for getting out of bed and with an arm on either side for support and someone pulling my drip stand around, I managed to walk the 10 yards to the toilet. This was a major achievement and I was thrilled to have done it. 

Having been in bed for 5 days wearing the very attractive hospital attire, I had requested a few nighties so that I could feel more myself. The position of the scar meant that pyjamas were not really an option as I was so tender.

This felt like a day of progress and I finally started to feel as though recovery was going in the right direction.

Keep Smiling :)

Intensive Care

Intensive care is one of the most incredible places to be. Obviously it's not somewhere you would electively request to go, but as far as being in hospital goes, they are amazing units. 

I spent 5 days in intensive care (partly because there was no space for me on the recovery ward) and whilst those days are rather fuzzy for me, I do remember how high tech everything was. I was hooked up to lines that fed me, gave me fluids and made sure that my glucose and insulin were balanced. I also had my pain relief. This was a drug called fentanyl. This was administered as a continuous dose with an additional PCA - patient controlled analgesia. I was given a button to press each time I felt that I needed some pain relief. 

At the heart of all this incredible high tech equipment were the staff. It takes a special kind of nurse to work in intensive care. I must have been a relatively straight forward patient to look after. My surgery although major, was essentially elective and takes place on a fairly regular basis. I had no complications with my surgery and I was generally lucid during my recovery. However, I could barely move and could do very little for myself. The nurses who looked after me were the most caring and patient people I have come across. I remember not being able to properly ask for things and often gestured for things like water and for my lips to be looked after as they were unbelievably dry. The nurses also had to wash me and keep me moving. Above all of that, they had to put up with my inane ramblings and keep me company. Every single one of the nurses on the intensive care ward gave an absolute 5 star service and I have never felt so well looked after. 

My first full day in intensive care was, according to mum's notes, a bit of a painful one. The PCA was a godsend. I also had a visit from a very good friend who came in with the most adorable card...

As a crazy dog person, this is just the card I needed!

We had a good long chat and I think I thoroughly enjoyed our catch up but I honestly cannot remember anything I said. All I remember is that we sat together and had a really good chat. I think I also recorded a message for Abi on this day but my memory is very fuzzy!

Day 3 (October 31st) was apparently more of a painful day. In some respects, I'm thankful that I can no longer remember the pain that I was in but in others, I wish I could so that I could try and convey the full experience. I remember that there was an awful lot of pain but I can no longer recall where it was or liken it to anything which is really frustrating. 

I did have a visit from my lovely cousin Hannah on this day. We had a good long talk about her time in Hong Kong and how her course in tropical diseases was going. Mum, Dad and Caius were also with me nearly all of the time and by this time I was beginning to pick up on some kind of routine that visitors had to do. Before coming in, they had to wash their hands and put on a plastic apron to prevent infections being spread. 

I started to drink small amounts on Saturday but still wasn't eating and had no desire to. This is unheard of for me. Bear in mind that my last meal had been on Wednesday night and it was now Saturday! Food has always been important for me - mainly because before the transplant, it had so much of an effect on me. Eating the wrong things had often put me in hospital and with diabetes I had to try to keep control of my diet. I also like to keep as healthy as possible through eating the right things. As well as that, the dose of steroids I had been on had an impact on how much I wanted to eat!

This, I believe, was also 'cheese and prunes' day. As a bit of a Michael McIntyre fan, I always crack up at his 'cheese/ prune' sketch and if you haven't seen it, I suggest you take a look - it's from the 2012 'Showtime' show. To give you an idea, here are my 'Cheese' and 'Prune' faces:

CHEESE!

PRUUUNES

Day 4 (November 1st) was another painful day. I think this was the day when I was moved into a semi private room in intensive care. The pain was causing me to cry out quite a lot and this was possibly disturbing to other patients. I think it was on this day that I was surrounded by doctors, probably about 5 or 6 in the room talking about how they were going to proceed with my care. I remember being in agony; whimpering and calling out, not making any sense. Most of the doctors were talking and seemingly oblivious to the fact that I was in pain. At this point, I remember one of the younger members of the team stopping everything to say that before anything else could happen, they needed to get my pain under control. This was one of the first times that I felt as though the doctors were doing something that would help. Before this, they had generally been poking and prodding and to me, it seemed as though they were doing more harm than good! I have never thanked anyone as sincerely as I thanked that doctor. Finally, it seemed as though someone was on my side and that they were going to do something about the pain. 

I remember the nurse on this day. She was amazingly reassuring and when I didn't have visitors in, she was by my side holding my hand and reassuring me that every patient went through a really bad day before they started to improve. At the same time, she was also firm and ensured that I was working hard to get myself better. This included trying to cough which was absolute agony!

The other small problem I was facing was poo. Or lack of. I had had no bowel movement at all since before surgery. Apparently they don't like to send post-op patients to the recovery ward without some evidence of bowels waking up. After such major surgery with large quantities of anaesthetic and considerable nerve damage, doctors like to make sure the body is waking up again but it seemed that mine was being a bit slow! 

One of the other things I noticed around this time was my smell. I felt like I absolutely reeked and my breath and mouth felt disgusting. I was given another bed wash and had my gown changed which feels more lovely than I would have imagined. I was also given a mouthwash which was not so pleasant. The nurses used these sort of lollipop sponges to dampen my mouth when I wasn't drinking and also soaked them in corsodyl to clean my mouth. If you have ever used this stuff as a mouthwash, you will be fully aware how disgusting it is! I was reassured by those around me that I didn't stink but have to say, I still remember feeling horrible even after being cleaned up by the wonderful nurses. Again, they are not paid enough for what they have to do!

Keep Smiling :)

Unknown Number

When 'unknown number' flashes up on the phone there are often a few different reactions that could run through a person's mind.

Should I answer?
Is it a cold call?
It might be important!
It could be my parents...

for me, especially since a false alarm call in September, 'Unknown Number' sent my heart to my throat pounding at a million beats a second. 

It could be another call. 

I'd had a few 'Unknown Number' calls since the first false alarm and most had provoked this reaction. Mostly, they were calls from the hospital arranging appointments or calls from my parents who have a withheld phone number!

At 00:02 on 29th October 2015, my phone buzzed under my pillow. 

Unknown Number.

There was no doubt about this one. 

I answered as calmly as I could, trying to sound as normal as possible. Obviously receiving a potentially life-changing call in the middle of the night requires utmost normality. I listened to the familiar, calming voice at the other end telling me that there could be a match and I needed too get myself ready. I would get another call shortly to let me know how long the ambulance would be. 

I phoned Mum and Dad. Dad answered. 

'Take two', I said.

'Take two what?' was the response... I made it a bit clearer. Dad had just come in from the pub from his guitar club night. Given that the false alarm call had seemed pretty relaxed and had taken over 8 hours from phone call to being sent home, Mum and Dad chose to get some sleep before making their way up.

The transplant co-ordinator called back to say that the ambulance would be with us in an hour and a half. I had a bath, took my time, tided the house and made an attempt to relax. 

Fast forward a few hours and Caius and I are at the Royal Free. Mum and Dad are on the way. 

Keeping warm in Caius' Gilet

I spend most of the time telling myself and Caius that it's not going to happen but somehow things are different this time. We go through the same process of getting into the hospital gown, ECG, chest X-ray, blood tests (17 vials!), cannula. It took us a little longer to get to the hospital this time so the fact that things are moving a bit quicker doesn't seem to indicate much. They tell me I'll be going down at around 7am. Mum and Dad aren't that close but given that it's almost 7, it doesn't feel like I'll be in surgery soon. I'm given some temazepam (a tranquilliser) to calm the nerves. It sends me funny and then to sleep. It's gone 7 and people are talking about 8am being staff changeover time so I'll be heading down near then. Mum and Dad are close. They're nearly here. It's almost 8am and the bed is being wheeled somewhere. Caius is with me holding my hand. I think I was a bit teary by this point. I told Caius to tell Mum not to feel guilty for not making it. I loved them all and would see them soon.

Temazepam induced strangeness!

There were nurses beside me now, holding my hand and comforting me. Caius was there and the doors to theatre were opened. The bed was wheeled in and I had tears falling silently down my cheeks. I was terrified by this point. It was really happening. 10 to 14 hours of surgery lay ahead and who knew what would happen during or after that surgery.

I was slid onto a different bed for surgery. I was hooked up to a few monitors and the anaesthetic was given. Someone held and stroked my hand and comforted me the whole time, reassuring me that everything would be ok. I was asleep.

My pre-surgery tummy...

Home Sweet Home

Woohoo! I got discharged yesterday after over 5 days in the beautiful BRI.

Now it's time for the real recovery to start. The trouble with hospitals is that whilst their purpose is to make people better, the environment really isn't conducive to this. They say that sleep and rest is one of the best things for recovery and yet they are one of the most difficult places to get any sleep at all. During my first night, I was under 2 hourly observations. This meant that every 2 hours a nurse would come round to take my blood pressure, temperature and blood sugar levels. Being stabbed in the finger every 2 hours is bound to wake you up no matter how strong the painkillers! Thankfully this only lasted one night and gradually reduced to 4 hourly. This still meant that every morning at 2am and 6am I was woken up for a sugar test. 

A hospital ward is also never dark and never, ever quiet! I am fully aware that this is for the benefit of the patients as monitoring in the dark is not going to be possible and the noises tell the nurses exactly what's going on and where they need to be most urgently. The liver ward can be a particularly noisy place to be... There are a lot of patients who are suffering from withdrawal or hepatic encephalopathy, both of which can cause severe confusion and make people do some very strange things. Last time I was on the ward, someone smashed a window and climbed out using the fire escape. Nothing quite so extreme took place this time but there were some very noisy patients. The lovely little lady opposite me was profoundly deaf and struggled to communicate but at night she made the strangest noises! I described it to visitors as 'a dying llama'. It was a very strange exhaled bleating noise and whilst it was an entertaining noise, when it's been going on all night for 4 nights, it becomes quite exhausting. At the other end of the ward, there was a gentleman who spent most of the night (and day) shouting. I have no idea what he was shouting about but he definitely wasn't too pleased to be where he was. When you're struggling to sleep because of the noise and goings on, it can be easy to forget that these people are in hospital for a reason and they are not well. Luckily, the nurses are fantastic and even though they are pushed to their limits, they remain calm and caring towards every single patient. I'm sure they go home and have a bit of a moan about some of the things they have to put up with, but I suspect it would be far worse if they kept it all in! I also need to remember that, as a patient, I'm there for a short amount of time and experience far less than what the nurses do day in, day out. I cannot thank them enough for the level of care they provide in such difficult conditions.

Getting back home was such a relief. My puppy greeted me with all the enthusiasm she could muster which was completely overwhelming and almost led to a bit of hysteria as she wouldn't calm down and managed to smack me in the face. I got myself a culpa and snuggled up on the sofa with all the home comforts around me that I could need - tea, biccies, blankets, TV and my snuggly (now calm) puppy dog. Last night, I got a proper full night of sleep and was able to get out of bed when I wanted without having someone turn the fluorescent lights on to take a blood test. All I need to remember now is that I'm not yet ready to run around doing housework, take the dog for long walks or get back to doing 8 hour days at work and that a proper rest is what is needed to make sure that I am completely fit and ready when I do go back. 

Fingers crossed that there are no more of these hospital admissions between now and 'the call'!

Keep Smiling :) 

Guess who's back, back again...

This post was supposed to be one about the AIH meeting last week. Unfortunately, the week has been a bit tumultuous and I find myself writing from a hospital bed.

Monday started well. Work was ok, Caius had the day off so I had a wardrobe delivered to go in the spare room once all the work on the main bedroom is done. Except that I failed to tell him the bit about awaiting to assemble it and came home to find a nearly complete wardrobe in the bedroom that I had spent Sunday clearing out and clearing. I completely exploded. The poor guy ws trying to be helpful and all I could do was yell at him. Not nice. Few people have experienced the full extent of my temper but Caius is one of them. 

I left for rehearsal and managed to calm myself down. Rehearsal was intense and I was not quite prepared for doing so much dancing. We were learning a big routine and by 8:30 I was pretty tired. After a group tea break, we cracked on but I found myself struggling so sat myself down to watch and learn. About 9:15 I was becoming a bit fuzzy and realised that having not expected to do so much dancing, I had probably had too much insulin- thank goodness for the emergency haribo in my handbag! 

I had calmed down quite a bit by the time I got home and yet another well meaning gesture from Caius was taken badly by me and once more, I snapped. I really do worry about the effect my volatile temper has on my relationship but hoping to get this sorted soon with a referral back to liaison psychiatry. Once I'd been through a full spectrum of emotions ending in hysterical sobbing, we managed a real conversation. We concluded that I probably ought to stop the show and see if I could take some time out from work. I ended up on the phone to Dad at 2am to sort out logistics and see if I could get back to Devon for a few days next week. 

Tuesday was not so bad. I had a meeting with the mentoring team at UWE who are able to provide support for students who might have some difficulties doing the courses for various reasons. They have made sure that if I a can't make it to lectures, there is a note-taker available and I'll be seeing an advisor once a week to help keep me on track and approach my tutors with me should I find myself struggling at any point. This was a real reassurance for me. I followed that with a wander around Bristol Harbourside and Park street to get some raffle prizes for the work raffle. I managed to score some pretty good pieces that went down well at work on Wednesday. 

Wednesday at work was good and I was looking forward to seeing how the raffle would go down on Friday and how the different buffets across the office were going to work out. The evening was lovely and relaxed and ended up with good old Great British Bake Off!

Thursday at uni was better than expected. Having got myself into a bit of a panic about not having managed to do all the reading, I arrived early, went through one of the worksheets which seemed ok and chatted to a few others on the course who were also finding that there was far too much reading to manage. I actually understood the epidemiology lecture and got the maths right and had a good idea about what was discussed in the workshop. The economy epidemiology lecture I seem to be finding harder as there is just so much new information in such a short space of time. The same goes for the two afternoon lectures. They are one after the other with about a 20 minute break in the middle so it's a fairly full on information overload. Again, I found the content interesting though and I'm finally doing a course where I can see practical applications straight away.

After uni, I went to visit the lovely Beth who supplied me with tea and tart. We had a really great catch up (it's been far too long!) but this is where things started to go downhill... It seems that my gall bladder  did not enjoy the pear and chocolate frangipan tart quite as much as I did. There was rather a lot of gurgling and I became quite bloated. I didn't want to ruin the catch up though so did what I do best and ignored it. I figured it would settle down and it did seem to as I drove home and walked about a bit. There was a bit of niggling going on for the rest of the evening but I do get this quite often and it goes a few hours after eating. I tried some bland food in the form of toast for dinner but didn't feel particularly hungry. At 10, I went to bed. I usually find it painful to lie on my right side so sleep on my left right at the edge of the bed. The pain came back a bit stronger. I was trying to dose off but it kept getting worse until I was wimpering rather pathetically at Caius. He dosed me up with codeine and waited to see if it would have any effect. I lay back down and the pain inreased. I started to worry when it was not only painful to breathe in but it was shooting through my shoulder too. Caius made the decision to take me to A&E. By this point I was struggling to stand or find any comfortable position. In A&E I was sent through pretty quickly and got my hopes up that it was going to be a smooth visit.

How wrong I was. They had found me a bed. Despite me telling them that it was almost certainly colycystitis and that someone needed to let the liver team know I was in hospital, no one did. I waited 4 hours to see a doctor who after giving very vague information, spoke to dad who also said that both the BRI liver team and the Royal Free transplant team needed to know that I was in hospital with a possible infection. Unfortunately, having an infection means that I would have to be suspended from the transplant list until it has cleared as surgery at this time would be too risky. No one spoke to either liver unit from what I can tell. The surgical team were called which is normal procedure for a normal colycystitis admission but completely pointless for me as removing the gall bladder is not an option. At around 12pm on Friday I was moved to The Surgical and Trauma Assessment Unit (STAU) and I phoned the liver specialist nurse myself. No one in the department had been informed of my admission. As soon as they knew, the nurse was down on the ward to see me, make sure I was given antibiotics and sent to the liver specialist ward. It was so frustrating that it took all that time to get the right people contacted especially when we had asked them numerous times to get in touch with the liver specialists. I was so angry that I'd ended up having to do it myself in order to get the right thing done. 

Anyway, I was transferred to the right ward and have now been here since Friday evening. It looks like I'm unlikely to be out before Monday as the people I need to see aren't in at the weekend. I also need to be monitored on the  IV antibiotics and need to make sure I am re-listed for transplant ASAP. Once I've escaped, I'll head down to a Devon for some mum and dad tlc, a whole lotta rest and cuddles with the dogs! Until then, I'll be keeping myself entertained with whatever I can find on the iPad - any suggestions very welcome. 

Keep Smiling :-)

6 Months List-versary

Yesterday (September 24th) marked the 6 month point for me being on the Liver Transplant list.

Those 6 months have been fraught with emotion and I think the only way I have managed to keep myself positive is through the support I have received from not only my family and friends, but also from the support group networks that I am a part of. These are primarily online but I have recently been trying to re-kindle a local support group that I set up with the help of the British Liver Trust and the specialist nurses at the BRI. I would love for this support group to take off a bit more as face to face support can be so beneficial to all who attend. It is not just about receiving support, but also about giving support and encouragement to others and sharing information that can help improve care. The presence of the specialist nurses benefits both parties also. The nurses learn more about the frustrations that patients face and are able to take these concerns and find possible ways to improve how patients are treated whilst patients are able to talk to the nurses on a more level field and can express their concerns more openly than in an appointment.

I have also managed to keep myself occupied and entertained during these 6 months. Shortly after I was listed, I downloaded an app to my phone called 'Countdown'. Each time I have a social event or something exciting to look forward to, I put it into countdown with a picture and when I open the app, it shows me how long until each of the events. This reminds me that there is always something to look forward to and stops me sitting around waiting for the phone to ring.

Since being on the list, I have done so much -possibly more than I have done prior to listing and almost certainly more that I should be doing...

I was listed in March. In April, may amazing other half whisked me away for a gorgeous holiday in Sherwood Forest. We stayed in a cabin in the woods and enjoyed a whole host of activities.

Snuggles with a Tawny Owl

The Incredible Golden Eagle

So regal looking!

Friendly Squirrels at Clumber Park

Wollaton Hall - AKA the house in Batman

Selfie in front of Major Oak :)

Segue Experience

Followed by Go Ape!

Our trip up north was finished off with a visit to York to check that my awesome friend Abi had settled into life as a student midwife... including a trip to Melton's for dinner - AMAZING food so if you're ever in the area, I suggest you check it out!

During May, we had a go at swing dancing with a block of swing dance classes for 6 weeks. It was great fun and we had hoped to continue but life and things do get in the way and haven't managed to make it to another lesson since the beginners classes ended. Fingers crossed, we will take it up again one day! 

We also went on a group trip to Snowdonia and Caius and I tackled Snowdon! I made it to the top in 3 hours which I was so proud of...

A bit sweaty and teary but I made it! Just had to get back down again!

Post walking drinks :)

In June, I enjoyed a bit of sailing by heading back to my parents in Devon and taking part in the Eddystone Pursuit race, an annual race for charity where the more you raise, the higher up the leader board you can climb!

I also fulfilled a dream of mine... to go to Glastonbury!! This was an incredible experience and I absolutely loved it. I didn't really see shed loads of bands or visit all the different fields and areas but enjoyed taking in the atmosphere and not having to worry about much. I can't talk about Glastonbury without a nod to the weather which was relatively kind this year. There was a day that was fairly wet and rainy during which I learned that my pac-a-mac from a well known, low cost retailer was not in the slightest bit waterproof! Luckily I managed to dry out and after the rain subsided in the early evening and it held off long enough for me to get back to the tent and into bed. My one disappointment was my tent... I  went with the option that was available - a genuinely vintage tent used by my family when I was young. Putting up the tent was quite straightforward but once it was up, it was evident that me, my inflatable mattress and my bag were not all going to fit! In fact, the inflatable mattress only just fit in there on it's own. I will definitely be looking to do Glastonbury again post transplant and hope that I will be able to make a bit more of it, stay up later and really look at what the festival has to offer.

July saw the celebration of my birthday! This year, I went back to Devon as Caius was in Spain being chased through the street by bulls. Mum had organised a Mad Hatters Tea Party themed open garden event to raise money for the local hospice charity - St. Luke's Hospice. It was a fabulous event despite the weather and I was guest of honour - Alice in Wonderland. I spent months sewing myself the perfect Alice dress inspired by the Tim Burton film version of Alice in Wonderland!

The team showcasing the amazing cakes!

As a keen baker, I thoroughly enjoyed spending the entire day before the event knocking up a selection of sweet treats including fondant fancies, meringue mushrooms, and tea-cup cupcakes. And of course, a giant cupcake with mango and mascarpone filling and topping with crushed meringue... mmmmm mouthwateringly yummy! I was worried there wouldn't be enough insulin in the world to get me through the day!

August was filled with busy sociable weekends including the Bristol Balloon fiesta - one of my favourite weekends in Bristol- I just love hot air balloons. They look so peaceful suspended in the sky and seeing them almost in the garden and surrounding the house with the sunrise as a backdrop is simply stunning.

I also enjoyed a weekend in Dorset with Mum and good friend Susie. We relaxed, ate, and visited the lovely coastline of Dorset.

Date nights with the man included a night at the Hippodrome to watch 'An Evening of Burlesque'. We both thoroughly enjoyed the show and meeting a few of the Artistes afterwards, especially those who complimented my dress and asked if the two of us had recently married as we looked so happy and dapper!

This was followed by an outdoor showing of The Princess Bride at Blaise Castle. Picnic hamper and numerous blankets at the ready we had a fab evening watching the sunset and then a classic favourite. 

There were a few bittersweet events with two leaving parties held on consecutive weekends to say goodbye to two friends who have decided to take some time out to travel to Australia for a year. Laura and Nikki will both be missed but I hope they have an incredible time on their travels.

That brings us to September and possibly one of the biggest challenges for me to face... Taking on a masters in Public Health (as well as working part time and rehearsing for a musical that I'm in in October!)

I still have so much to look forward to and as a lover of the festive season, things are looking good for being kept busy!

One thing that I have been very aware of during the last 6 months is my lack of hospital visits for gall-bladder problems. Whilst this should be something that I am celebrating, it also leaves me feeling anxious. My initial listing was triggered by the repeated admissions I had last year. Each time I was admitted, my blood results flared up massively and whilst they always came down, they never came back down to the level they had been prior to the admission. Although I have been reassured on many occasions that my blood results and various scans indicate that I should be on the list, the lack of admissions still worries me. I have been waiting for so long to be put on the list, always knowing that it was likely to happen, that the possibility of being removed is terrifying. It is evident that my condition is highly unlikely to improve and transplant is inevitable but what if they decide it's not an immediate priority for my health? I was slightly reassured by the recent false alarm call as that does indicate that I am being thought about and am on the minds of the transplant team so will just have to keep that as a positive! 

In the meantime, I will continue to look forward to exciting events to keep myself from focussing on my phone. 

And of course, as always I will Keep Smiling:)

P.s - as I was writing this, I experienced a nice little reminder from my right hand side abdomen that it's not too happy with a stabbing side pain that thankfully subsided quickly!