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”!

Gall Bladder strikes again!

If you haven't read any of the Awkward Yeti cartoons, I love them and they keep my strange sense of humour satisfied. The 'Sad Gall Bladder' ones are a particular favourite.

In the early hours of Saturday morning, I woke up absolutely parched and feeling achey. I got up, got a glass of water, downed it, refilled it and drank another half glass before heading back to bed with the remainder. Shortly after, the rest of glass 2 was gone but the aches had got to the point where I couldn't really move. My head felt like a lead weight and my neck was stiff. I was warm but with the covers off I felt shivery so snuggled right in and hoped for sleep. After a few hours, I thought it must be 'flu. Absolutely typical. My 'flu jab was booked for 9:49 on Saturday morning and with flu like symptoms, it's not a good idea to have the jab. I think it was probably about 6am when Caius noticed I wasn't quite right. He got me more water and checked my temperature which was running high. Half an hour later it had crept up further and the decision was made to go to A&E. This time, I dosed up on my steroids and took an antibiotic as per the suggestion of the consultant when I was discharged last time. Unfortunately this all came back up in the waiting room!

I was seen pretty quickly and sent through to a bed. This time, they actually listened to me and I was put right on IV antibiotics, sent for a chest x-Ray (mainly because I'd had chest pain) and had an ultra sound to double check there were no gall stones. The ultra sound showed that my gall bladder is 'angry'. That seems to be the understatement of the year! As Dad says, more like 'bloody furious!'

The last few days have been spent questioning how this happened again so soon... Did I go back to work too quickly after the last admission? Was it because I ate too much on Friday night? Have I overdone it? Then there are all the questions about the future... Will this become a new pattern? When can I go back to work properly? Will I keep letting work down by ending up in hospital? And then come the biggest question of all- When is that phone call going to come?

The phone call that will mean I will never have to worry about a gall bladder infection again as I won't have one anymore. No more missing out on friends birthday celebrations because I've been admitted to hospital. Being able to make plans and know with more certainty that I will be able to go through with them. The option to book a holiday abroad - oh for some real sunshine! This phone call will mean so much to me and I am willing that phone to ring and to find that the next time is the right liver for me. 

For now, I'll muddle along and will keep positive- I still have so much to be thankful for!

Keep Smiling :-)

Update: it's Monday evening and I have been moved to the liver ward. It's not as spacious and much more chaotic than MAU but I will be seen by the right team here. I was hoping to be discharged today but am still in quite a bit of pain when the painkillers wear off. I have been introduced to fentanyl during this stay and boy is that stuff magic! Things are a little bit crazy and emotional to say the least but I do now have Netflix (and possibly an addiction to Dexter). Recommendations welcome :-)

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!