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 :) 

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.

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...

Dress Rehearsal

I had a plan for my blogs this week. They were going to be promoting some amazing people who have had transplants or who have donated organs in order to promote National Transplant Week. 

I also had a plan for myself this week. It involved going to work, rehearsals and a few hospital appointments. And then I got a phone call. 

At 6am on Tuesday 8th September I was somewhere in between asleep and awake when I felt a buzzing under my pillow. I glanced at my phone to see 'Unknown' and knew right away that this was the call I had been waiting for for nearly 6 months. As I answered, my boyfriend leapt out of bed, started getting dressed and pacing the room. I have never seen him move so quickly in the morning! 

I don't remember the name of the lovely transplant nurse who called me, but she had a wonderfully soothing irish accent. She kept me calm and let me know that I could have a slice of toast and a cup of tea. She asked if I had someone who could get me to the hospital or if I would need transport. Since being listed, I have been advised by the team to take the transport as I needed to get to the hospital fairly quickly and hospital transport would have the option of blue lights if necessary. I went for this option and the nurse said she would call back to let me know about transport. At this point, I actually asked the question 'should I call Mum and Dad?'! I did call them and Dad knew right away what the call was. Then I remembered that the nurse was calling me back and I needed my phone free. Just in time. Seconds later, the phone rang again to tell me that transport would be with me within the hour. Caius suggested that I have a shower which was a very good idea. It killed some time and allowed me to relax a little. 

Whilst my bag has been packed for nearly 6 months, Cauis hadn't got anything packed- lesson number one- make sure everyone who is going to the hospital is ready to go! Before the transport arrived, I managed to clean the dishes, sort out my nails (very important) and get some cuddles with my lovely Coco pup. 

Ready to go to the hospital- #sayidonate

Shortly after 7am, an ambulance car arrived and we were on our way. As soon as we got out of our residential road, we hit traffic. Luckily just a short stretch that didn't hold us up too much. We were driving to Reading services where we would meet another ambulance to take us to the Royal Free. The first part of the journey was fairly smooth. Then we got near Swindon and there was a call through to say to get the lights on. There had been an accident near Swindon that had closed all three lanes. I learned that not enough people check their mirrors regularly enough on the motorway and the biggest culprits are van drivers. Without rear windscreens, the only way they can see behind them is by using their side mirrors. We sat behind one van for quite some time with the lights and sirens going. The ambulance driver was trying to make sure the van driver could see us by moving into the line of his mirrors. It still took much longer than I expected to get the van to move and once he was out of the way, there was another right in front! As we got closer to the accident, the traffic was standstill and we had to use the hard shoulder. Not something that emergency vehicles are keen to do as there is a lot of nasty debris along the hard shoulder. At the accident itself (which thankfully didn't look too bad), we went around the cones and were stopped by a very young chap who asked what we were doing and even asked if the driver had permission to be using lights and sirens! The driver explained the situation and the lad sheepishly let us on our way. We made it to Reading in an hour and a half where we changed into a people carrier style ambulance. This ride was a little bit hairier. We were heading into London at rush hour so spent most of the journey with lights and sirens going, weaving in and out of traffic. It was during this part of the journey that I got a call from my brother. He'd had a bit of an awakening at 3am when Mum called to let him know the news. He wished me luck and asked if it he would be able to talk to me before I went in for surgery. I could tell that he was worried but being strong. He was asking about coming home and I told him not to do anything silly like get the next flight back! It was only after this call that it hit me what was happening and was the first time I cried. The driving soon distracted me though and whilst Cauis found it all very exciting, I was clinging onto my seat as we flew through a petrol station as a short cut, drove through lanes of traffic and ended up going up a hill on the wrong side if the road coming up to a blind bend!

We made it to the hospital at around 9:30am where I was shown to a bed. At this point, it felt like the brakes had been put on. We waited whilst the bed was made up before I could lie down for an ECG. A while later, bed made I was lying down and had lovely stickies stuck all over me and was wired up to the ECG machine. Take 1 failed- no paper in the machine! I was unplugged and waited a bit more for a new machine to be found. Take 2 also failed- apparently I was dead inside. Nothing came out on the paper. Finally, the transplant co-ordinator who had come for a chat managed to make the machine work. The co-ordinator, Katie, told us that they knew the donor history and that all was looking good so far. The liver in question had been randomly selected for the trial that I had signed up for where the liver is profused and kept warm. This meant that things didn't have to be as rushed as they would normally be. I was then sent off to get a chest x-ray. This involved a little bit of exploration of the hospital but was an easy procedure and didn't involve too much waiting. The waiting that was done, was kept entertaining by Cauis and I making silly faces at each other. 

Back at the bed, I started watching a film. Of course, this was the cue for people to come and talk to me! The anaesthetist came to talk me through what would happen once that had made a decision about the liver. Then a doctor came to take blood and said he'd be back in 10 mins to out a cannula in. A medical 10 mins is very different to a standard 10 mins. 

Mum and Dad arrived at around 12:30 with a new friend:

Meet Fifi the sleepy Owlet :)

Katie returned just to let us know that they hadn't looked at the liver yet to make a decision and that it would probably be about 4pm that we would know any more. She let us know that the longer it took, the more likely it was to be good news. 

Shortly after, the doctor returned to put the cannula in. First attempt didn't go too well and was taken out right away. The doctor set off to get a new cannula and try again. The second attempt was more successful and now I was pretty much set for surgery. 

By this time, Mum, Dad and Cauis were all trying to get themselves sorted to stay in London for the night. Cauis managed to get a hostel room in Camden for a reasonable price but Mum and Dad struggled. They had their car with them and needed somewhere that had sensible parking and wasn't extortionate. It was quite a shock how little information was available regarding accommodation and also how difficult it was to get internet in the hospital to be able to research and find somewhere. The only recommendation the ward staff could give was the Premier Inn just down the road which was fully booked. They headed off to get some lunch and to see if they could find out any more about accommodation. During this time, I was hooked up to some fluids to keep me hydrated and to regulate my sugar levels. A diabetic without food and water is not great.

Mum came back and Cauis left to get some lunch leaving us time to have some mummy daughter time. Mum and Dad had a place to stay sorted by this time. Dad came back after topping up the car parking. It was around 2:45pm by this time. I was getting a bit nervous and the enormity of what could happen was starting to hit. I was also starting to feel quite unwell. I had not had any of my medication for the day so I was starting to ache all over and was feeling very sleepy. 

At almost exactly 3pm, the transplant co-ordinator came back. It was bad news. The liver was not transplantable. I was devastated. All day, I had been telling myself: 'This might not happen'. I'd been trying to keep everything relaxed and keep an open mind to the prospect that it wouldn't go ahead but the longer the day went on, the harder this got. When I was told the news, I broke down. I was exhausted and aching and just couldn't keep it in anymore. The day had been so long and drawn out, I couldn't face the thought of going back home without anything having been done. But that's the reality of it. If the liver is not good enough, it's not worth transplanting it as there will only be complications down the line. Katie told me that the liver would not have been suitable for anyone. 

Cauis came back just after Katie left. Mum and Dad cancelled their accommodation and I was left waiting to be unhooked from my drip and to have my cannula taken out. I also asked if it was possible to get some prednisolone as I hadn't had my dose that day. The co-ordinator who was at my initial assessment came to see me and let me know that the liver had been 80% fatty and that as I was young, they wanted to make sure I have an exceptional liver transplanted to give me the best possible chance of living a relatively uncomplicated post-op life. All these reassurances are great but it still doesn't really make the disappointment any easier to deal with.

About an hour later, I was unplugged, drugged and ready to make the journey home. It was lucky that my parents had driven up as otherwise we would have been traipsing through London to get trains back and I only had slipper socks on my feet!

The drive home held some better news in store. Whilst driving back to Bristol, Mum received a phone call from her good friend Kathy. She was now a grandmother! Chris and Lucie, her son and daughter-in-law, had welcomed their baby girl into the world - huge congratulations Chris and Lucie! :)

A few lessons were learned during this dress rehearsal:

1- make sure everyone has bags packed and ready to go

2- find out before leaving if it's ok to take my daily meds

    2a- put a supply of meds in my emergency bag

3- Look into accommodation options early

4- NOTHING can prepare you for the news that it will not go ahead.

For now, I will start waiting again and keep going until the next phone call.

most importantly of all:

Keep Smiling :)