5 weeks ago my life changed forever.

(Before you start reading, I just want to say that I started writing this post two weeks ago… in between recovering I have been busy living my life again so it’s taken me a while.)


Well, I’m still here but I’m no longer waiting.
I was hoping to write this post much sooner than this but I just haven’t been able to bring myself to do it. I really don’t know how to put the last few weeks into words but the time has come where I’m ready to try.
Five weeks ago, on Wednesday 1st October, a family made one of the most difficult decisions they have probably ever had to make. The most difficult, courageous decision. That decision was to say yes to donating the organs of their loved one who had just passed away. I’m sat here typing this yet I still can’t believe that decision connects to me… but it does. At 5.15am on Wednesday 1st October my phone rang. As I answered the call from ‘No Caller ID’ my head knew who the mystery caller was but my heart didn’t believe it or couldn’t quite accept it until a few seconds into the phone call when it was confirmed.
‘Hello Maxine, it’s Grace, one of the transplant coordinators from King’s’
This was it, that was the sentence I had been waiting to hear for 15 months. Somewhere, somebody had just lost their life, a family had just lost somebody they love and in the middle of this tragedy they courageously decided to save the lives of strangers and one of them happened to be me. How on earth do you process that?
Grace continued to talk and told me that there was a possibility that they had found a liver for me. It was from a young donor and it would probably be a split liver transplant meaning I would get 60% and a child would get the other 40%. She instructed me to only drink water from now on and that the ambulance would be with me within the hour. She wished me good luck and we said goodbye.
As soon as I put the phone down I went straight into my mum and dad’s room to wake them up. I called out to them in a panicked voice but after a couple seconds of no reply from them and my panic increasing, I switched the light on and shouted a bit louder, giving them no choice but to wake up! They looked at me half asleep and confused so I told them: ‘I got my call, Grace just called me, I got my call!’
My mum told me to sit down on the bed and calm down, she felt my heart beating out of my chest and told me I needed to breathe. I told her everything that Grace said and when I got to the part about it being a young donor I broke down in tears. I’ll never be able to communicate just how I felt during all of this. Yes, I was scared, I was nervous, I was in shock and I was relieved but above all else I was just hit by sadness, a kind of sad I had never felt before. At this point I wasn’t really thinking about what I was possibly about to go through, all I could think of was that somebody had just died and the loss that their family was dealing with and although I didn’t know them, although they are complete strangers to me I felt that loss too. I always knew I would be affected by this part of it but I didn’t think I would feel it so soon or for it to be as strong as it was. I knew that to get through the next few hours I had to try my hardest to not focus on that part of the process, I would never get through it if I did so I decided to pull myself together and to do everything I could to give myself the best possible chance of the transplant going ahead and being successful because that was the best and only way I could honour and thank the donor at this point. Of course much of it was out of my control but I knew I could put my brave head on, be positive like I have tried to be since the very beginning of all of this and I could be strong and ready to fight!
I called my boyfriend, Josh and my dad called my sister. We had a loose plan in place that when I got the call, Josh (assuming he was at his house on the Isle of Wight, which he was) would get on the first boat possible and make his way to King’s in London, my sister would drive herself and my dad there and my mum would come with me in the ambulance.
We spent the next hour gathering our bags that had been packed since I was first put on the waiting list, sorting the house out and waiting for the ambulance to arrive whilst sat in silence mostly. After an hour, at about 6.20am it arrived and we set off for King’s.

1

The journey was bizarre. I had so many thoughts and emotions rushing around my mind. All the anxiety and frustration of the 15 month wait had finally come to ahead in the space of an hour. I was scared, sad, uncertain, happy and releived. As the sun came up it seemed to be stronger and brighter than ever, blindingly so. This peaceful setting was contrasted by the busy rush hour traffic and the noise of the sirens from the ambulance. With the risk of sounding melancholy, every time I looked at the sky and the bright sunshine I couldn’t help but think of the person who had lost their life and wonder who they were and what their life was like before today. I hoped that the transplant would go ahead, not just for my benefit but also so that the family and the donor would get their wishes and something good could come from their loss. I knew that it might not happen, I kept that at the front of my mind the whole way there but I also kept the hope that it would happen at the front of my mind too. Mostly I just felt sick. Really, very sick.

photo

We arrived at King’s around 9am and I was taken to a room on the ward to wait. Over the next couple of hours I was looked after by the nurses who did my obs, ECG and made sure I had everything I needed including HiBi scrub (antiseptic wash) to shower with in prep for the surgery. I saw one of the liver doctors who took my blood, fitted a cannula and sent me for a chest X-Ray. In between this the transplant coordinator (who would be overseeing my transplant from start to finish) came and introduced herself and kept us updated throughout the day. She told us that the liver would be arriving at King’s at 2.45, it was more than likely that the transplant was going to go ahead as everything looked good so far but the team at King’s still needed to have the final say once they had examined it themselves. She also told us that once the liver got to King’s and the team had examined it, they would decide whether it would be a suitable liver to split between me and a child or whether it would be kept whole, in which case it would go to me.

Rockin’ the socks.

After a couple more hours of waiting at about 3pm, the coordinator came back and told us that it was a definite go ahead and that I was going to get the whole liver. She said this meant the surgery would be going ahead very soon and the anaesthetists would be down to collect me shortly. I started to get very nervous and teary knowing it was going ahead. In this kind of situation you cannot let yourself get caught up in thinking the worst and about all the things that could go wrong but you also can’t stop yourself from thinking about it all – they’re real risks, the worst could happen so of course I had a few moments of panic and thinking ‘this could be it’ but as soon as I started to think that way I immediately stopped myself and told myself ‘it is going to be fine. I am going to be fine’. I put the negative thoughts aside and concentrated on the fact that this was what I’d been waiting for, this was the first day of my new life and the feelings of relief, happiness and most of all gratitude were all I could focus on. My family and Josh were so calm and just kept reassuring me that everything was going to be fine. They were amazing and made things much easier, as always!
Before I knew it three anaesthetists and my coordinator were in my room going over my consent form with me, making sure I knew what was about to happen and that I was still agreeing to it going ahead, we then all started to walk down to the Liver Transplant Theatre. My family and Josh were allowed to come with me through the first set of double doors into a small room, in front of us was a second set of double doors which were the doors to the transplant theatre. Once we got into the small room, two more of the medical staff came out of the theatre (I can’t remember who they were) and went through my consent form with me once again. Then, the time came for me to go into theatre and for me to leave my mum, dad, sister and Josh. I gave them all a hug and a kiss, told them I loved them and then gave them all instructions on what to do whilst I was ‘out’, who to update etc and then we said ‘see you later’, not goodbye.

Walking down to theatre.

I walked into theatre with the anaesthetists and my coordinator, the first thing I could see was the group of theatre staff stood in the corner surrounding a small table with the retrieval box (which the liver came in) next to them on the floor… I soon realised they were preparing the liver and I could see them doing so. That was quite a moment. I proceeded to do as I was instructed and lied down on the table/bed. As I was laying there the anaesthetists were talking to me about my slippers, I told them I bought them especially for the occasion (I wasn’t lying) from Primark. We then had a lovely conversation about our love for Primark. In the middle of this conversation they told me they were about to give me an injection which would make me feel a bit ‘woozy’ and ‘like I’d had a gin and tonic’ (their words, not mine). I was used to this protocol and was expecting the next part to be them placing the oxygen mask over my nose and mouth and telling me I would drift off to sleep, that’s what has happened every other time I’ve been put to sleep but obviously this was different because the ‘gin and tonic’ feeling and the pleasant conversation about Primark is the last thing I can remember. I was gone!

The team prepping the liver. My transplant coordinator took this photograph for me before I went into theatre.
The team prepping the liver.
My transplant coordinator took this photograph for me before I went into theatre.

While I was in surgery and afterwards, while I was still out of it, Josh and my sister did as they were told 😉 and kept a diary of what was going on. I am going to share that and the story of my recovery time in hospital in my next post, just so this doesn’t turn into a novel!

You can read part two HERE.

Thanks for reading so far x

 

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5 thoughts on “5 weeks ago my life changed forever.

  1. Hi I have just read your latest at 1125pm, amazing insight into your very special day, WOW what a read, I look forward to your next installment, I have also listened to your interviews from Radio Somerset, you are one inspiring lady! Take Care and keep getting well. Nick. (UC 1991, PSC 2004)

  2. Hi Maxine,

    Since I was listed, I have followed your blog and am very pleased everything has worked out. Gives the rest of us hope!

    Keep up the good work.

    Best regards,

    Rahul

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