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 :)