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

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 :)