In the meantime...

Good evening!

Today I travelled to Birmingham with Caius to go an Auto Immune Hepatitis support conference. It was a great day but I will aim to tell you more about it tomorrow when I've had time to digest all the information.

In the meantime, I would like to point you in the direction of a great blog that I was recently introduced to. It's called Zen Habits and makes a good read every so often for advice on living a 'zen' lifestyle. This may sound a bit 'hippy' to some but I really do recommend it for techniques for taking a new perspective on things.

You can reach the blog here

Keep Smiling :)

6 Months List-versary

Yesterday (September 24th) marked the 6 month point for me being on the Liver Transplant list.

Those 6 months have been fraught with emotion and I think the only way I have managed to keep myself positive is through the support I have received from not only my family and friends, but also from the support group networks that I am a part of. These are primarily online but I have recently been trying to re-kindle a local support group that I set up with the help of the British Liver Trust and the specialist nurses at the BRI. I would love for this support group to take off a bit more as face to face support can be so beneficial to all who attend. It is not just about receiving support, but also about giving support and encouragement to others and sharing information that can help improve care. The presence of the specialist nurses benefits both parties also. The nurses learn more about the frustrations that patients face and are able to take these concerns and find possible ways to improve how patients are treated whilst patients are able to talk to the nurses on a more level field and can express their concerns more openly than in an appointment.

I have also managed to keep myself occupied and entertained during these 6 months. Shortly after I was listed, I downloaded an app to my phone called 'Countdown'. Each time I have a social event or something exciting to look forward to, I put it into countdown with a picture and when I open the app, it shows me how long until each of the events. This reminds me that there is always something to look forward to and stops me sitting around waiting for the phone to ring.

Since being on the list, I have done so much -possibly more than I have done prior to listing and almost certainly more that I should be doing...

I was listed in March. In April, may amazing other half whisked me away for a gorgeous holiday in Sherwood Forest. We stayed in a cabin in the woods and enjoyed a whole host of activities.

Snuggles with a Tawny Owl

The Incredible Golden Eagle

So regal looking!

Friendly Squirrels at Clumber Park

Wollaton Hall - AKA the house in Batman

Selfie in front of Major Oak :)

Segue Experience

Followed by Go Ape!

Our trip up north was finished off with a visit to York to check that my awesome friend Abi had settled into life as a student midwife... including a trip to Melton's for dinner - AMAZING food so if you're ever in the area, I suggest you check it out!

During May, we had a go at swing dancing with a block of swing dance classes for 6 weeks. It was great fun and we had hoped to continue but life and things do get in the way and haven't managed to make it to another lesson since the beginners classes ended. Fingers crossed, we will take it up again one day! 

We also went on a group trip to Snowdonia and Caius and I tackled Snowdon! I made it to the top in 3 hours which I was so proud of...

A bit sweaty and teary but I made it! Just had to get back down again!

Post walking drinks :)

In June, I enjoyed a bit of sailing by heading back to my parents in Devon and taking part in the Eddystone Pursuit race, an annual race for charity where the more you raise, the higher up the leader board you can climb!

I also fulfilled a dream of mine... to go to Glastonbury!! This was an incredible experience and I absolutely loved it. I didn't really see shed loads of bands or visit all the different fields and areas but enjoyed taking in the atmosphere and not having to worry about much. I can't talk about Glastonbury without a nod to the weather which was relatively kind this year. There was a day that was fairly wet and rainy during which I learned that my pac-a-mac from a well known, low cost retailer was not in the slightest bit waterproof! Luckily I managed to dry out and after the rain subsided in the early evening and it held off long enough for me to get back to the tent and into bed. My one disappointment was my tent... I  went with the option that was available - a genuinely vintage tent used by my family when I was young. Putting up the tent was quite straightforward but once it was up, it was evident that me, my inflatable mattress and my bag were not all going to fit! In fact, the inflatable mattress only just fit in there on it's own. I will definitely be looking to do Glastonbury again post transplant and hope that I will be able to make a bit more of it, stay up later and really look at what the festival has to offer.

July saw the celebration of my birthday! This year, I went back to Devon as Caius was in Spain being chased through the street by bulls. Mum had organised a Mad Hatters Tea Party themed open garden event to raise money for the local hospice charity - St. Luke's Hospice. It was a fabulous event despite the weather and I was guest of honour - Alice in Wonderland. I spent months sewing myself the perfect Alice dress inspired by the Tim Burton film version of Alice in Wonderland!

The team showcasing the amazing cakes!

As a keen baker, I thoroughly enjoyed spending the entire day before the event knocking up a selection of sweet treats including fondant fancies, meringue mushrooms, and tea-cup cupcakes. And of course, a giant cupcake with mango and mascarpone filling and topping with crushed meringue... mmmmm mouthwateringly yummy! I was worried there wouldn't be enough insulin in the world to get me through the day!

August was filled with busy sociable weekends including the Bristol Balloon fiesta - one of my favourite weekends in Bristol- I just love hot air balloons. They look so peaceful suspended in the sky and seeing them almost in the garden and surrounding the house with the sunrise as a backdrop is simply stunning.

I also enjoyed a weekend in Dorset with Mum and good friend Susie. We relaxed, ate, and visited the lovely coastline of Dorset.

Date nights with the man included a night at the Hippodrome to watch 'An Evening of Burlesque'. We both thoroughly enjoyed the show and meeting a few of the Artistes afterwards, especially those who complimented my dress and asked if the two of us had recently married as we looked so happy and dapper!

This was followed by an outdoor showing of The Princess Bride at Blaise Castle. Picnic hamper and numerous blankets at the ready we had a fab evening watching the sunset and then a classic favourite. 

There were a few bittersweet events with two leaving parties held on consecutive weekends to say goodbye to two friends who have decided to take some time out to travel to Australia for a year. Laura and Nikki will both be missed but I hope they have an incredible time on their travels.

That brings us to September and possibly one of the biggest challenges for me to face... Taking on a masters in Public Health (as well as working part time and rehearsing for a musical that I'm in in October!)

I still have so much to look forward to and as a lover of the festive season, things are looking good for being kept busy!

One thing that I have been very aware of during the last 6 months is my lack of hospital visits for gall-bladder problems. Whilst this should be something that I am celebrating, it also leaves me feeling anxious. My initial listing was triggered by the repeated admissions I had last year. Each time I was admitted, my blood results flared up massively and whilst they always came down, they never came back down to the level they had been prior to the admission. Although I have been reassured on many occasions that my blood results and various scans indicate that I should be on the list, the lack of admissions still worries me. I have been waiting for so long to be put on the list, always knowing that it was likely to happen, that the possibility of being removed is terrifying. It is evident that my condition is highly unlikely to improve and transplant is inevitable but what if they decide it's not an immediate priority for my health? I was slightly reassured by the recent false alarm call as that does indicate that I am being thought about and am on the minds of the transplant team so will just have to keep that as a positive! 

In the meantime, I will continue to look forward to exciting events to keep myself from focussing on my phone. 

And of course, as always I will Keep Smiling:)

P.s - as I was writing this, I experienced a nice little reminder from my right hand side abdomen that it's not too happy with a stabbing side pain that thankfully subsided quickly!

What's in the bag?

I have had differing advice about 'The Bag'... I've gone with the following:

The Bag:

A lovely little number, I'm sure you will agree! It's a fairly sensibly sized, easy to carry, holdall type overnight bag.








What's in it...

Pyjamas:

Somewhat creased having been in the bag for 6 months now but they are super comfy PJ's










Pants:

For this particular situation, I'm definitely going for comfort over style... 











Socks:

Snuggly slipper socks perfect for wandering around the hospital in (there's also a purple pair in the bag!)










Sleeping Aids:

Hospitals are notoriously noisy and bright - not conducive to the sleep that is so essential to recovery. Hopefully an eye mask and some ear plugs should help out a little bit! (Although on the whole I find both quite uncomfortable)








Medications:

A small selection of the most vital of my medications. This is a new addition to the bag after the last visit. I received 'the call' in the early morning before taking my medication and since I was not sure if I was going into surgery, I did not take my meds. I probably should have checked with the nurse who called whether or not to take them but anyway, I didn't. By the time I was told the surgery was not going ahead it was 3pm, I hadn't eaten and still hadn't had my meds. This meant that I was in an awful lot of pain. Without my steroids, my muscles become very achy and even the slightest touch is painful. My joints start to hurt and I get horrific headaches, which is exactly how I felt at the end of the last visit. As I didn't have any meds with me, I then had to wait for the hospital to get some sorted before I went home. There was no way I would have been able to make the 2 1/3 hour drive home without them. To this end, I now have this small stash in 'The Bag' in case something similar happens next time I am called in.

A Towel:

Hospital towels are small and thin. I have a feeling that (gross as it is) I won't be showering myself for a few days but it's still nice to have a semi-decent towel to look forward to after that first proper shower!









Shower bits and bobs:

Again, hospital shower stuff is not the nicest so I thought some of the bits that I like might be appreciated when I'm able to use them. I absolutely love the Mango Mayhem shower gel and can't seem to get it anymore so I'm glad I grabbed that one when I did! (Simple things!)




Dental Hygiene:

Because no one wants to hug someone with stinky breath!











The Toiletries Bag:

My favourite bit in the bag- my sailing toiletries bag to keep all the little bits and pieces neat and tidy!










Shoes:

Another new addition to 'The Bag'... After the last visit, I ended up wandering around cafes, car parks and service stations in my slipper socks. I wanted to be as comfy as possible on the drive up but forgot that if things didn't go ahead, I would need to walk to places! Problem now solved!








So there we have it. My hospital bag. I suspect that most of the bits and pieces will be completely irrelevant the first few days after surgery and the idea of having a bag is a complete waste of time. It does however, make me feel as though I am slightly prepared so whether or not I use it, I still feel better having it!

Keep Smiling :)

Dress rehearsal: the review

It's been over a week since the dress rehearsal and I think it has hit me harder than I first thought it had.

Example: my phone started buzzing at me on Thursday and when I saw that the number was 'unknown', my heart leapt into my throat and I couldn't get out of the room fast enough to answer it!

I have also been struggling to sleep and find myself waking up in the early hours with an awful lot of rubbish whirling through my mind and unable to get myself back to sleep. Any suggestions to relieve this would be welcomed!

The main question that has popped up since last week has been 'why didn't the hospital find out if the liver was fatty before calling me in?'

There are a few branches to the answer to this question.

1. Time - once there is no blood supply to any of the organs, there is a very limited amount if time to get the organ into the recipient,

2. A donor is likely to be donating more than one organ, all of which need to be harvested and checked. The donors family and friends are already going through a traumatic experience and the last thing they want is for their loved one to be whisked away in their last moments to undergo a series of tests to check each of their organs.

3. Fatty liver itself is a often a silent disease. 

A healthy size person may have a fatty liver and equally, someone who is overweight does not automatically mean they have fatty liver.

It is often picked up through unrelated blood tests that might be carried out and there are often no symptoms.

For more information about fatty liver, check out the British Liver Trust page on Non-Alcohol Related Fatty Liver Disease.

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 :)

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 :)

Decisions, Decisions!

Things have been pretty exciting lately...

I recently decided (after at least a year of thinking about it) to apply for a masters in Public Health. This is a subject that I find incredibly interesting, partly due to having to go through the health system so much during my life so far and partly because it is an area that my family have had a great deal to do with. My Dad was a GP For 30 years and my Mum works in Health Improvement. 

I sent off applications to Bristol UWE and the University of Bristol to undertake the course part time alongside work.

Last week, I was offered a place at UWE and excitedly accepted. After a week of juggling, my employer managed to alter my job role and hours to suit the course and have been incredibly supportive and flexible. 

Today, I received a phone call from one the admissions team at Bristol University to discuss my capability to cope with the scientific nature of the course. Having perviously studied English and Business, they wanted to make sure i was prepared for something a little more science based than I might be used to. After this conversation, I was offered a place at the University! AMAZING!!

BUT- now I have to make a decision between the two and decision making is really not my forte... 

I will make sure I keep my avid readers informed of the outcome!

Keep Smiling :)

p.s - I will also soon learn how to respond to the lovely comments I have had so far. Apologies for not working this out sooner.