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.

Mumma's 'call day' account...

In keeping with the last post, here is a piece by my Mum telling of the experience she and my Dad had on the day of call number 2!

They live near to Plymouth so had quite a trek to get to the hospital and didn't have the advantage of flashing lights and sirens.

The phone call came in just as Rob and I were going to bed. I had been holding a Christmas play meeting in the house and Rob had been to guitar club. As soon as the Phone went and I knew it was Jenni,  I knew immediately what it was. We both knew that we were in no fit state to drive as it was past midnight so we decided to go to bed for an hour or so, we woke bleary eyed and packed a bag each, to tide us over for a couple of days, I don't think either of us thought that it would go ahead after the last aborted mission to London just a few weeks earlier.  We knew that Jenni had arrived at the hospital but had been reassured that nothing would happen for a few hours so we stopped for a coffee on the way to wake us  up and have a leg stretch. We reached Hampstead at I  think,  about 7.30 we had contacted our son Paul in America who had spoken to Jenni to send his love and best wishes and Caius Jenni’s boyfriend has been keeping us up-to-date with what was happening.  We had just arrived in Hampstead, literally less than a mile to the hospital but it was rush-hour and the traffic was at a standstill. Caius had told us that Jenni would be going down to theatre and that she was being prepared, at this point I started to panic because I was frightened that I wasn't going to get there before she went down. I spoke to her on the phone and told her I loved her and we will be there as soon as we could. Rob  dropped me outside the hospital and I ran to the ward but she had gone. I then had to find the theatre. I rushed to the desk and then saw Caius, so I knew I had missed her and that she had already gone down. The tears started and wouldn't stop. It was sheer grief and sorrow at not being able to hold my daughter’s hand. I wanted to tell her how much I loved her and how fantastic this opportunity was going to be for her future. I wanted to tell her not to be frightened and to be reassured that she would see all of our smiling faces  when she came to later that day. I wanted to hold her hand and touch her face for that moment in time when despite all the confidence I had in the team looking after her I was still afraid that I might lose her. I was so glad that Caius had been with her so she wasn’t alone. The nurse came out of the anaesthetic room and told me that Jenni wasn't asleep yet, so I was able to get a message to her and took some comfort in knowing that she knew we were there ready to welcome her back to us. 

We waited for 10 hours, pacing, drinking coffee, nodding off, trying to read . We had regular bulletins telling us that the old liver was out… New liver was in…. She was doing brilliantly … She was in recovery … She was in intensive care where we could go and see her. 

And there she was, a radiant smile on her face, looking tiny in amongst all the drips, lines, drains and monitors, but that smile, I will never forget. She said ‘I love you mummy, so much and I was so worried that you would be upset that you didn't see me, but I know you love me and Caius was with and I'd spoken to  Paul, I was Ok” 

We couldn't believe how awake and lucid she was .

It was clear though that she was under the influence of drugs, namely fentanyl, because she was singing songs and reciting poems the most  memorable being “I wish I was a glow worm, a glow worm’s never glum, 'cos how can you be grumpy when the sun shines out your bum”!

Another point of view

So, I've been a little quiet on the blogging front lately...

Good news! I've been recovering from my transplant which took place on Thursday 29th October. 

I have also been looking to give some alternative perspectives to the whole experience and so have asked a few of my nearest and dearest to write about 'The Call'.

This is the first instalment of those perspectives and comes from my wonderful other half, Caius. 

Me, My Man and our Pup :)

7:59am….

The doors closed behind Jenni and I wouldn’t be able to see her until after the operation. I don’t know where I am, or where to go, or what to do, or who to call. The emotion takes over.

A nurse on her way on to her 8am shift touches my arm and asks if I okay and if there is anything I need. I don’t know what to say. I can’t move.

Rewind 10 hours and Jenni and I are clambering into bed after a regular evening of rest and relaxation for Jenni (recovering from her second bout of Cholecystitis) and dish washing for me post-cooking. We fall asleep curl into one another, Coco at the end of the bed. Silence, peace, content.

Midnight…..

We both wake up to the hum of Jenni’s phone whirring on silent. Jenni answers, I recognize the calm voice on the other end.

Out of bed, hospital bags out of the closet, clothes on the right way round. At least they gave us the benefit of two hours sleep.

The liver is a match, the ambulance is on its way. T-minus 90mins. We’ve done this, we had everything fine-tuned. Jenni opts for a bath whilst I start hunting for the last essentials: iPad, chargers, iPod….. got to load up those audiobooks.

1.30am

The ambulance turns up, we jump in help the cockney driver to drive through Bristol city centre to the motorway, then we both conk out. The next thing we know, we are entering London, driving through empty streets and pulling up at the Royal Free.

3am

We don’t know where we are going, making a bee-line for the ward we went to last time. Redirected to the right ward, checked in.

Everything is different. There is immediacy in everything the people are doing. Tests (17 vials of blood!), scans, questionnaires, plans of action. Is this happening?

5am

It’s going ahead, its happening. I feel excited for Jenni, scared about if things go wrong, anxious about what to expect after the op, alone and responsible with the lack of her parents in the mix (racing past Reading by this time)

Jenni and I take the time to cuddle up on the bed, to take just a moment before this reality becomes real.

They send in some tranquilisers for Jenni to calm her down. This causes her to get the giggles and acted completely loopy and stoned. Hilarious.

6am

They want to take her down soon but are waiting for the 8am shift to start to make the process smoother. 

7:45am

We are off. Jenni is welling up. Fear, excitement, trepidation, missing her parents (who are battling the morning traffic but are so close)

7:55am 

In the lift, on our way to surgery. My hands are shaking, but I keep up the brave face.

7:59am

The take her away from me

Will I see her again?

Silence

8.07am

Jenni’s parents exit the lift. They’ve missed her by 8 minutes! I feel their pain. They couldn’t see their little girl before she left. The nurse that took us down appears from the door and offers to pass on a message. At least Jenni will know we are here.

8:25am

So what do we do now? We have up to 12 hours to wait around. Relocating to the local café we start arranging things. I have a list of appointments to rebook for Jenni, people to notify, friends and family to keep apprised. Jenni wanted me to get in touch with people when and only when she was under the knife.

Rob, Sarah and I all need to arrange accommodation for the next week or so. 

Now at this point I am on fire! The adrenaline is surging and I am Mr Reactive! Ticking off the tasks, making the calls, making sure everyone knows what is going on. When I run out of things to do, I’ve got hours to kill before Jenni is (potentially) out. With Rob and Sarah going out to look at some shops and accommodation, I decide going to work (in the London office) is a good idea.

I actually get a couple of hours of work done, no-one knows what I’m doing there. I don’t mention Jenni. I don’t know why. I guess I wouldn’t know what to say but really I think it’s because if people start getting concerned around me and hugging me I might lose it. I can’t, not yet.

I go to a meeting in the city (rearranged) then head back to the hospital. By now it’s approaching 7pm and we are told we can go in very soon.

Jenni came around and we were allowed in to ICU at 7.30pm. I won’t lie, it was like being on board a spaceship; all futuristic and cool. We scrub up to see our girl.

Cables, tubes, beeps, blips and the hissing of oxygen. People could be terrified by the sight of all that… technology. But all I can focus on is Jenni. She is awake, she is calm, she is beautiful.

She is the most beautiful thing I have ever seen

The healing powers of Devon (now with pictures!)

My last post really didn't say what I had intended it to say so I'll have another go!

I got a bit distracted prior to writing my last post and would like to draw your attention to the cause of my distraction. I follow a few other blogs and one is the blog of another patient in a similar situation to myself. Jess is an incredible young woman who is also waiting for a liver transplant and the post that distracted me was about her first phone call. I'll leave it there and urge you to read the blog yourself. You can find it here.

Anyhoo, back to my convalescence week and my time in a Modbury...

I love my hometown and going back for whatever reason always reminds me of what a great little place it is.

You may never have heard of Modbury, the peaceful Devon town with a population of approximately 1500, but it is a town worth knowing about! England is currently up in arms over the new legislation about charging for plastic bags. Modbury stopped using plastic bags 8 years ago after resident Rebecca Hosking, a wildlife camerawoman, showed business owners the damage that plastic bags can cause to wildlife. All Modbury businesses backed the plan to ban plastic bags and have since used paper bags or biodegradable bags. Many businesses complain about the cost of implementing such a scheme but if a small town like Modbury that is predominantly independent businesses can survive making this change during a financial crisis, I don't see why others can't follow suit. The majority of Modbury residents have a collection of reusable bags accumulating in their homes/ cars/ handbags/ pockets so no longer have any need for plastic bags. It's such a simple change to make that if the rest of England could take on with the same enthusiasm as the residents of Modbury rather than complaining about every aspect of it, such a huge difference could be made to the environment.

Charming Modbury Town

I enjoyed being back for nearly a whole week and having no car meant that I was able to properly rest and be chauffeured when I did go out. For once, I managed to be quite well behaved and took each day at a time, trying to build up slowly and rest in between doing things. I had a haircut on the Tuesday at Nicholas Hair and Beauty, the same hairdresser that I went to as a child and always go back to when I'm in the area. It has changed over the years and has been able to keep itself relevant with fantastic staff, treatments and therapies. There is something really lovely about having a haircut. I love having my hair washed and head massaged then catching up with the goings on that in the town that Mum has a missed out!

On Wednesday I took myself for a little wander around the shops in the town. I love that there is such a diverse range of shops in such a small town and that there is so much support. That is the joy of growing up in such a close knit community. Having a dad as a GP in the town meant that my brother and I were quite well known in the town. I also took part in all of the shows and pantomimes whilst Paul was a keen sportsman and outrun everyone at sports day and in The Famous Modbury Mile!

I made sure to visit a few of my favourite shops in the town starting with Pickles. As a child, this place was like an Aladdin's cave of a little bit of everything! From proper dog treats to wetsuits, hardware, kitchenware and everything in between! It hasn't changed all that much as you an still get a whole lotta stuff in this treasure trove but is has brought itself up to date with the layout, kitchenware products and baking bits and bobs. It is also the place to buy your 'Modbury' fridge magnet (as requested by my strange but wonderful other half!). Next stop was the veg/ pet shop to find out if the owner knew of any pet groomers in the area. My little munchkin Coco is having difficulty seeing out from behind all the fur at the moment. The chap knew of someone but couldn't find the number so was going to wait for his wife to get back. In the meantime, I popped round the corner to Modbury Melodies, one of the newer additions to the town run by a wonderful local couple. This is a fab little music shop filled with a great range of musical instruments and goodies. Paul is very knowledgeable and not only runs the shop but teaches alongside. He also organises music events in the local pubs and my parents had performed in one on the Sunday before I visited so I went in for a chat to see how it had gone. Fingers crossed I'll get to see the next one or maybe even be involved! Whilst in the shop, the chap from the pet shop popped in to let me know he'd found the number for the dog groomer- another perk to living in a place like Modbury- people go out of their way to help.

Over the road, I popped into Fifth Sense. Another new shop to the town run by another lovely local team. This is another little Aladdin's cave but a little more girly than Pickles! As you walk in, the scent is beautiful. Upstairs, Isabelle creates gorgeous natural and organic essential oils which in turn become soaps, bath bombs and other luxurious goodies. Fran stocks a lovely range of home ware, gifts, baby goodies and much more. She creates fabulous furniture giving old pieces a new lease of life. There are some stunning lamps created by local artist Dagny Burgess - I noticed that Mum had nabbed herself one of these which looks perfect in the snug room! I left with a lovely little gift from Fran who gave me one of the bath bombs so I could enjoy a relaxing and revitalising bath to help me feel better. Thank you Fran!

Gift Baskets Available from Fifth Sense

Further down the road is the delightful Ringrose shop, stockists of the famous Modbury Mug designed by local artist Kate West. They also have a great range of gift cards, wrapping paper, scarves, jewellery and much more. There are some lovely seaside themed goodies that always attract my attention.

One of the 'Modbury Mug' designs by Kate West

Back down one of the side streets is the Lazy Cow Cafe and the Crazy Cow gift shop. Whilst I didn't take a break in the cafe on this day, I have done many times before and they make the best cakes, lunches and cream teas around! I did take a peek in the shop and was overwhelmed by the incredible smell of baking- I think it was caramel or toffee something at the time! Oh the sweet, sugary temptations! There were freshly made brownies on the counter and cakes being cut ready for decorating as well as a whole range of delectable looking cakes wrapped and ready for sale. I had to make a bit of a swift exit to avoid temptation but did notice some lovely looking cookbooks for sale too.

Seriously yummy cakes at 'The Lazy Cow'

There are so many more goodies in the town that I didn't make it to as that turned out to be quite enough effort for one day. It may be small but I would recommend a visit if you're ever in the area!

On Friday, my Mum took the day off work and we went with the lovely Gill for lunch in Salcombe at The Winking Prawn. It was the perfect day for it. I Couldn't quite believe that it was October. We sat and enjoyed our lunch on the decking outside overlooking the beach with still seas, clear blue skies and a sailing boat making the most of the glorious weather. Lunch was delicious - yummy prawns and dip with a few chippies- and was followed by a quick shopping trip to Salcombe town. We didn't stay too long as mum was feeling a little under the weather and I still wasn't up to long days out.

South Sands Beach, Salcombe in October!

My man turned up in the evening which was wonderful. I'd missed him and needed hugs! On Saturday, Mum and I decided to introduce Caius to Totnes - a slightly wacky town with a bit of a hippy culture that is twinned with Narnia and has it's own shop called Narnia (I'm yet to see any wardrobes, lamp posts, fur coats, fauns or lions for sale there though). We had a lovely little wander around the shops and a tasty lunch in one the the very many cafés before heading home for more rest- a couple of films and a yummy dinner of fresh skate wing caught by Dad on Friday.

Heading into Narnia...

On Sunday I went with mum to visit my grandad and take him out for a coffee. He hasn't been too well and had ended up in hospital the same weekend as me with a chest infection so he wasn't altogether with it but he always enjoys getting out and about. We visited Glazebrook House Hotel which is clearly one of Grandad's favourites. Apparently he loves the coffee there and they know exactly how he likes it. The staff were so friendly and attentive and couldn't do enough to help. To top is off, the hotel is decorated in an Alice in Wonderland theme with giant teacups filled with pansies on the tables outside, rooms named after characters from the books and some wonderfully bizarre decorations adorning the place. Being a bit of an Alice in Wonderland fan, I was in heaven. Everywhere you went there was something to look at. I'm hoping someone will treat me to a short break there someday!

a sneak peek of Glazebrook House

Back home we had a lovely family Sunday lunch together before Caius and I headed back to Bristol and so ended my week of rest and relaxation.

A week after returning to Bristol and I am once more writing from a hospital bed having been admitted yesterday morning. However, since this has taken me half of the day to write, I'm going to leave it there. I also have some pictures to add but my iPad is not playing ball right now!

Keep Smiling (and remember to support local businesses!)
:-)

Back to reality!

After a week of being looked after my Mum, Dad and the dogs, I'm back in Bristol and back at work.

It was exactly the week I needed. Lie-ins, movies, reading, cuddles with the dogs, a little bit of shopping and some family time. 

Whilst I managed to get a good rest in, I still had some emotional ups and downs. This was my biggest worry in terms of going back to work as, while I feel physically much better, emotionally I don't feel in control. At the same time, I knew that the longer I stayed away, the harder it would be to go back so I took the bull by the horns and headed back. It started a little shakily, quite literally! My right hand would not stop quivering and my heart was in my throat. Once I got stuck in though, it settled down and I managed to get through the day without any emotional swings. 

It has been pretty tiring though so I'm now ready to sign off and head to bed fairly soon!

Puppy Cuddles!

Night Night and Keep Smiling :)

I do love a good list!

1. Thank you

A big thank you to everyone for their love, support and words of encouragement not only over the last few days, but throughout my journey. You are all amazing and keep me strong and positive. I hope that should any of my family and friends need me, they feel able to ask. I certainly don't want others to think that I have enough on my plate - part of what makes me happy is to know others around me are happy and to provide support and care to those who need it.

Beautiful flowers that were sitting on my desk for me when I got back to work on Thursday

2. Dog invasion

Friday night was mayhem. Mum arrived for a visit with 3, yes 3, dogs in tow. Our two family dogs, Paddy and Tess, and her temporary guest, Klaus. 

We enjoyed a quick snuggle on the sofa before I needed to head off to rehearsal...

L to R: Coco, Mum, Paddy, Me, Tess

Klaus's little legs couldn't quite get him up there to join us! (He's a long haired dashund with teeny tiny legs!)

3. Meeting Ava

The purpose of mum's visit was so we could meet baby Ava, born to very good family friends whilst I was waiting to hear news about my potential new liver!

She was sound asleep in her gorgeous basket when we arrived. Chris and Lucie were glowing and didn't look at all tired (although I'm sure they were) and nana and pops were proudly watching over their amazing family. 

Ava woke and was ready for a change (time for pops to step up to the mark), then a feed. Mum and I shared feeding duty after which I fell asleep. With Ava. 

I am very much looking forward to having the chance to be a mother myself, something that is currently on hold until probably about a year post transplant to give my body time to heal. In the meantime, I will enjoy times like this with other people's delightful little miracles that I can give back when they are less peaceful!

4. Officially a Student

On Friday afternoon, I completed my registration at... UWE! I am officially a student again and will be starting my MPH on Thursday. People have questioned my timing with this. Why take on a university course when I might have to leave for an indefinite amount of time? Am I well enough to take this on? Is it really a good idea? 

The answer is simple. I don't know how long I will have to wait for a new liver. I don't want to put everything on hold whilst I wait for this phone call and if I can at least make a start to working towards a future, then why shouldn't I? If another call does come through, I pause the course and return when I'm able to. I may need to repeat modules or coursework but I am prepared for this. 

Here's to a new chapter!

Keep Smiling :)