Sunday, 18 September 2016

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!

Sunday, 3 July 2016

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

Sunday, 8 May 2016

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 :)

Tuesday, 26 April 2016

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

Saturday, 23 April 2016

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!

Thursday, 24 March 2016

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 :) 

Saturday, 12 March 2016

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 :)