Moving On

Hello all, I hope you are well?

Once again, I am up late unable to sleep. This time because I thought there was a burglar in the house. It turns out that a pin board I had stuck to the wall earlier in the day had fallen down...!

I feel as though I must apologise. As I have mentioned before, I do not feel as though I have made this blog what I had hoped it would be: A thorough, no holds barred, documentary of life pre and post liver transplant. The whole experience affected me differently to how I expected and challenged me in a way I could not have predicted - which was partly the point of writing the blog - to show others how mentally and physically draining waiting for and recovering from transplant can be.

So much has happened since I began my blogging journey. Last week I was very much reminded of this... As I crept out of the house with Caius in the early hours of the morning, I took a quick glance at Facebook. At the top of the page was a 'on this day last year' picture. It was of me waiting for the ambulance to arrive to take me to London for my first potential transplant. I had my silver and black holdall packed and ready to go. This year, the same bag was packed and ready to go but this time, it was heading to London and beyond as Caius and I left for a getaway to Kefalonia, something that had been completely out of the question the year before.

Since recovery, there has been so much that I have wanted to write about but haven't. I was too exhausted, in too much pain and then, as recovery progressed, I was too busy.

I am now back at work 3 days a week and am also volunteering with both a toy library and the children's hospital playroom. I'm hoping to improve my fitness and get back into sailing and am also planning my wedding. Then there's Coco pup to be walked and time to spend with my Caius and the rest of my family and friends who have supported me through the difficult times when being sociable was too much hard work to even think about. Lately, I have been feeling guilty for neglecting blogging. I feel bad for not being there through the blog for those who might be about to go through the transplant process or for not writing so that those supporting transplant patients can read and have an inkling of what their partner, son, daughter or friend is going through. However, on October 29th 2015, I was given a second chance to live my life to the full. It is my responsibility to myself, to my donor and to the family of my donor to live that life to the absolute max. Right now, there is so much out there in the real world for me to experience, take part in and achieve that I have to get out there and do it.

I would like to thank everyone again for all of the love, kind words and incredible support that I have had since the very start of my journey back in 1999. To those who have found comfort or support in this blog, I hope that you can read back over past posts and continue to find help and comfort. If you wish to get in touch, I am now an advocate for Life Life, Give Life and you can find me here on their website!

And so it is that I say farewell and as always


Keep Smiling :)

Showing off that cracking scar!

Climbing mountains with my love

Celebrating my birthday in style!

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 :)

An honest confession...

This blog is not what I had hoped it would be...

I had this vision when I started writing that I would be able to give a blow by blow account of recovery post surgery. I wanted to get across exactly what it was like to recover from a liver transplant and to be able to provide something that would support those preparing for a similar situation and to educate those who are close to someone in such a situation. I also hoped that the blog would educate a wider circle of people... friends, extended family, employers so that they could have an understanding of what it is like to have to go through major surgery and the kind of support network that is required. 

The truth is, I could barely hold my phone for more than a minute within the first 10 days post surgery. I couldn't stay awake for more than a few hours let alone write about what I was experiencing. Once I was discharged, I expected to be able to write retrospectively about my time in hospital and the subsequent home recovery. In reality, I had to focus on actually recovering. And sleeping. 

I feel that the posts that I have written since being in hospital are not written how I wanted them to be. Because of this, I will now be writing as I did pre-transplant. Capturing moments and experiences as and when they take place.

Thank you once again for continuing to read and support me. I always welcome comments and suggestions and will work towards completing the outstanding pages on the site.

For now, here's a picture of me as Yoda...

Keep Smiling :)  xx

The Morning After the Night Before... (WARNING: SOME ICKY CONTENT)

Back to the Royal Free, November 2015...

The day after my first night of methyl-prednisolone was not the best I've ever had! Thankfully, there were signs of improvement given my condition the day before. I was apparently less yellow and was starting to feel a bit more energetic again. I even managed to get out of bed and move around again. 

At some point over the previous days, my catheter had been removed. Since then, myself and the nurses had noticed blood in my urine. No one was overly concerned about this until I noticed a very large bruise in my groin. When I say a bruise, I mean a lump close to the size of a tennis ball the whole area was purple. It was not a pretty sight and was rather uncomfortable. I informed the doctors and yet another ultrasound was requested to make sure that this was nothing sinister. Thankfully, the ultrasound showed nothing nasty going on and it was concluded that it was just a really nasty bruise probably caused by the catheter or removal of the catheter. This delightful bruise to a good couple of months to subside - oh the joys of not having a normal platelet count!

Luckily, my day was improved greatly by the visitors that came... 

With Abi on the day of yellow!

Abi was there for the second day. It was so good to see her and also to see her when I looked a little bit more normal (although having spoken to her since, she felt I looked even more yellow!). At least I as able to sit up and get out of bed this time. I was so grateful to Abi for being there and it reminded me what true friendship is. She had come down from York during the middle of her studies as a midwife to come and visit to make sure that I was OK. It meant the absolute world to me that someone would go to that much effort to come and see me when I was most certainly not at my best, especially as visiting was limited to after 2pm, meaning that she had to find ways to entertain herself before coming into the hospital. It turns out that Caius had some very important business to attend to that he needed Abi's help with...

One thing about being in hospital is that it is difficult to be completely presentable and so you need the people around you to be those that you are completely comfortable with. Luckily Abi is certainly one of those people and she didn't mind that I might dose off halfway through a conversation or that at times I was close to falling out of my very attractive hospital gown. She didn't even mind me talking about toilet humour! Laughter is of course the best medicine and this comes from having the best people around you during recovery. 

Phew! A much more normal colour!

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 :)

Gotta catch 'em all!!

I had intended to give a chronological account of my experiences but having got a bit behind, so much has happened in between that needs to be said! Don't worry, I will go back to the time in the Royal Free.

Today I had a bit of a tricky day. 

It didn't get tricky until mid-afternoon. I left for my rheumatology appointment shortly after 2pm giving myself plenty of time to get there. Traffic was a nightmare and so I was star gin to worry about being late. I made it to the rheumatology department in the nick of time but started to feel the tell-tale signs of dropping blood sugars - hot and shaky. Thankfully I had my emergency Haribo in my bag. Once checked in, I sat and waited. I was called to be weighed and fell apart. I was in quite a lot of pain in my left hip which has been playing up for some time leaving me able to walk about for around half an hour before causing trouble which then doesn't settle for the rest of the day. I hobbled down to the scales and cried. The nurse was so lovely. She sat me down in a quiet corner and I explained that I was feeling shaky and as though my sugars were low. She had them checked and confirmed that whilst I was above hypo measurements, it was low and it would be a good idea for me to get something in me. She sorted out with water, a cup of tea and a couple of biscuits- just what I needed after the quick fix of the Haribo. 

I sat in the quiet until the consultant called me in at 4pm, an hour after my appointment time. The consultant went over changes in meds since my last appointment and did an examination of my joints. The ones that came out as most painful were hips, knees, ankles and wrists. There was also pain in around half of my toes... Sitting back down, he broke the news that I had some sort of inflammatory arthritis. This was both a shock and a relief. A relief that actually I haven't been imagining these joint pains and that they can be attributed to something. A shock as I really hadn't expected anything to have shown up. The diagnosis came from the examination as well as blood results from my last visit. 

The next step is to start treatment for inflammatory arthritis and to determine which form of arthritis it is. The relevant tests have all been requested so I get to look forward to more blood tests, more x-rays and more ultrasounds!

I would like to reiterate how wonderful the nurses were. I felt pretty silly allowing my blood sugars to drop to the point where I got myself quite so worked up but they looked after me so well and kept a very good watch on me to make sure I really was improved enough to get myself back home.

So, it would appear that my immune system needs to chill out and stop playing Pokemon and trying to collect all these auto-immune conditions! Fingers crossed the treatment plan is given the go ahead by the liver team and that they can work alongside one another.

Keep Smiling :) 

The Biopsy

I have been a member of a few Auto-Immune Hepatitis (AIH) support groups for quite a while. These are fantastic networks that provide great support for patients with AIH and there are loads out there for various different conditions. 

Most patients with AIH will have had a liver biopsy at some point. Primarily because they are one of the most accurate diagnostic procedures for AIH. I have had a few since I was diagnosed to measure the level of damage to my liver over the years. Once my liver was confirmed as cirrhotic, there were no more biopsies as there was essentially no point in having them done. The damage to the liver was beyond repair and whilst the treatment was most probably slowing down any damage, it was unlikely to improve. These biopsies were all undergone the traditional way, i.e a sample of the liver was taken by entering through the rib-cage. This is most often carried out under sedation with local anaesthetic and involves a needle being inserted into the liver to take a sample of the tissue. On the whole, it is a relatively painless procedure however, as with all types of procedure, there can be complications. One that I once experienced was having a nerve caught by the needle which caused considerable pain in my shoulder known as referred pain. 

The biopsy that I was to have after my transplant is known as a transjugular biopsy. In this procedure, a tiny biopsy needle is inserted into a vein in the neck and using ultra sound as a guide, is threaded down the vein and into the large vein in the liver, the hepatic vein. From there, a sample of the liver is taken as in the regular biopsy. This is repeated 3-4 times until enough useable samples have been gathered. 

I was terrified. Unfortunately I had read a few horror stories of these biopsies through the support groups and had got myself really worked up about it. When I was told I wouldn't be able to have sedation, I began to get quite upset. I didn't have any family with me at this point to hold hands with or to be strong in front of or cry in front of. So I cried anyway. 

The team were incredibly reassuring and reminded me of the importance of having the biopsy done and getting the results back quickly. I dried my tears and went in, even managing a few jokes here and there.

As the team were preparing for the biopsy, I heard mention of my platelet count. Apparently it was 90. I was in shock and thought I must have misheard them. Pre-transplant, my platelets ran at around 20-25 so at hearing 90, I figured they must have said 19 but was reassured otherwise. I was slid from my bed onto the biopsy table. I then had a sort of tent attached to my neck which covered my face but didn't touch it. This meant I wasn't able to see what was going on - definitely a good thing!

Where the 'tent' was attached to my neck, there was a small area through which the procedure would take place. I was then given an anaesthetic injection into the vein that would numb the area and the vein itself. Once that had set to work, the procedure could begin. I felt a pressing sensation on my neck that was a little bit uncomfortable. I then felt the strangeness of the biopsy needle moving through the vein. Finally, there was a click and again, a small sensation of pressure on the liver and the needle was removed. This was repeated another few times so that they could ensure that there were enough samples of good enough quality to assess. A small stitch was used to close the entry area and I was ready to go on my way.

The whole thing took less than 20 minutes and I was back on the ward with a small square plaster covering the biopsy area. I was advised to stay flat in bed for the next 4 hours to prevent any bleeding from the biopsy area.

Overall, the experience was nowhere near as horrific as I had expected. In fact, it was mont bad at all. I wouldn't say it was something I enjoyed or that I would like to have done on a regular basis, but I was prepared for an awful lot worse. 

I hope that this account puts some people at ease.

The tiny steri-strips that can just about be seen on my neck are where the biopsy went in and this is the only sign that it took place.

If anyone would like to ask me any questions about this procedure, please don't hesitate to ask and I will do my best to answer.

For further information about liver biopsies, please take a look at the following links:

British Liver Trust: Other Diagnostic Procedures

Guys and St Thomas's Guide to Liver Biopsies

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 :) 

It's Getting Hot in Here...

The heat at times was unbearable... I think I had to be reminded a few times that stripping off was inappropriate! A number of times, the doctors would come round to examine me and want to but blankets over my legs which I was not impressed with. I had gone past the stage of wanting to retain my dignity and would happily have lifted up my gown and flashed the very attractive hospital nappy pants that I had to wear. In the end I gave in though.

Mum and Caius worked hard to try and keep me comfortable and bought in cool packs, mist sprays, cold flannels and even a couple of ice packs. The bed I was in was a special air bed designed for use in patients that aren't particularly mobile. One of the problems with it though, is that it retains heat making it very warm. By Tuesday 3rd November, I was more mobile and spending a reasonable amount of time sitting in my chair. The problem with the chair was that it was plastic and also very hot. Not only that, but the amount that I was sweating meant that I got completely stuck to the chair! I ended up trying to cover the chair in towels so that I could sit comfortably. The trouble with sitting was that it took a lot of energy, energy that I didn't quite have so ended up needing to get back into the boiling hot bed! I was in a perpetual state of being uncomfortably hot. If only hospitals were allowed to open windows - a bit of fresh air would have been an absolute godsend!

Chilling out with Dad. In my right hand is my PCA. The towel on my tummy was to help me cough- coughing was less painful when I pressed on a towel on my abdomen. This is a well used technique after abdominal surgery.

To add to the general heat of the ward and the bed, one of the side effects of fentanyl is sweating. After dosing myself up with fentanyl, I would break out in sweats but needed the pain relief! Again, a perpetual cycle of discomfort. 

The team were trying to bring the fentanyl dosage down but unfortunately I was still in quite considerable pain.

There was a light at the end of the tunnel... The ward I was on was a temporary arrangement whilst the actual ward was being refurbished. We were due to move to the proper ward the following week so I wouldn't have to put up with the heat for too much longer! 

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 :)

Wakey Wakey...

First of all, an apology. This hasn't turned out to be quite what I'd hoped it would be. I had hoped for a detailed recollection of all that I went through with the transplant and recovery but have left it far too long for that. Instead, what you will get is a lightly fuzzy, sometimes second hand account of my time at the Royal Free.

Secondly, I would like to emphasise that this is an account of what happened to me. The transplant experience and recovery process is different for everyone so whilst I hope this can provide some information about what to expect from recovery, each and every person will respond differently. 

I was woken up from surgery at around 7pm on Thursday 29th October and was taken to Intensive Care where my parents were finally allowed to see me. I cannot imagine the sense of relief they must have felt to see me having not quite made it to the hospital before I went into surgery. Personally, I don't remember any of this evening so what you read is taken from notes made by Mum.

Apparently, though massively doped up, I was awake, telling jokes and singing... One of my favourites was spurred on by Caius' frequent sighs of 'ay, ay ay'. This led to the following little ditty:

Ay, ay, ay, ay
Si, si senora,
My sister Belinda,
She pissed out the window
And filled up my brand new sombrero

This was of course recited at the top of my voice. Thankfully at the time, my vocal volume wasn't what it usually is!

I also liked to remind people that I was a little glow-worm... (a glow worm's never glum, 'cos how can you be grumpy when the sun shines out your bum).

It appears that I also wanted to remind my mum how much I loved her and kept saying 'I love you mummy'. 

As I have said, I don't remember any of this. When I came out of surgery, I was pumped full of a variety of painkillers which were being administered through lines in my neck. I was hooked up to machines which constantly monitored my stats such as heart rate, oxygen level and loads of others. I also had an oxygen tube up my nose, lines in each of my arms and a catheter in. I'm pretty sure I went to sleep fairly early despite having been asleep all day!

The following photos may be difficult for some people to view as they show the lines and monitors that I was hooked up to. I do feel however, that it is important to show everything that the transplant procedure entails.