After I went into theatre on Wednesday October 1st at 3.15pm, my family gave the transplant coordinator their contact phone numbers and they waited in the relatives room in the Liver Intensive Therapy Unit whilst the surgery was taking place. The coordinator told them that she would update them every two(ish) hours and to expect the surgery to last approximately six hours. Josh was very good at writing the updates in my book, so here is what happened in Josh’s words…
17:30 (2 hours after you went into theatre) : The coordinator came down to us to say everything is going well in theatre and that you are doing great! Next update will be in a couple of hours.
19:45 (4 and half hours after you went into theatre): Update from the coordinator. She said your old liver is out and the new liver is in! Just doing the final ‘plumbing’ and they expect to be done in two hours!
22:30 (7 hours 5mins after you went into theatre): Coordinator phoned to say you’d be out soon and not to worry (it’s been a bit more than two hours).
23:00 (7 hours 45mins after you went into theatre): You were wheeled out into the corridor in your bed and taken to your room in intensive care. You looked very sedated but wonderful. We were told we could come and say goodnight to you once they had settled you into your room.
23:30: We came in and said goodnight to you and held your hand.
00:00: We were told you would be brought round in the morning. The staff gave us blankets and we attempted to sleep in the relatives room.
06:00: You’re awake! We came and said hello! You were beaming, cheerful and a little tearful but you were making perfect sense. At this time you were still using the oxygen mask.
08:30: We came and said hi again and you were more chatty! Making perfect sense saying ‘I feel so happy’. Had your compression socks off. Your nurse is called Kyle.
2:45 We are back at the hospital now after going to settle into the hotel, apparently you are sat in your chair?! Although I haven’t seen this yet so there is no evidence.
(My sister, Jo now takes over the diary whilst she is sat next to my bed)
16:20: Its Thursday afternoon. We’ve been back at the hospital for around 2 hours now. We’ve all been in to see you and you’re chatty and happy. You had an ultrasound of your new liver today and the doctors are very pleased 🙂
You are tired and we want you to rest so you continue to get well quickly. I am sitting with you whilst you sleep. I’ve been stroking your hand and hugging you. You said:
‘I love it here’
‘I feel so safe’
‘Oh my god – I don’t have PSC anymore!!’
I’m watching all the monitors and looking at you resting. You’ve left me in charge of your pain relief – I get to push the green button when it lights up 😉
Kyle is still looking after you, he is telling me about all of the numbers on the monitor – he’s really nice!
18:00: We’re all still here, in and out of your room. Lots and lots of people are asking about you and wishing you well (100’s of people have been texting/facebooking etc. – you are totes popular but we knew that anyway 😉 ) We love you, all the world, all the universe.
20:30: We have all phoned round, EVERYONE sends their love and hugs. You’re settling down for the night now. Hopefully moving onto Todd Ward tomorrow – fingers crossed!
Friday morning (3rd Oct): (Josh writing again) Good morning. We stayed in the hotel last night. You said you didn’t sleep great and you’re in pain this morning. Dr is going to get the pain team to review you before you can move onto the ward. We will see you at 1pm.
From this point onwards I can remember things a bit more clearly as I was more alert so I can talk about the next phase of my recovery in my own words.
Friday (2 days post transplant): After the pain team reviewed me on in the morning, they upped my dose of morphine and it was then decided that I could be moved onto the ward and out of intensive care later that afternoon. I was now ready to have my central line removed (a large drip in my neck which was being used to give me some of the IVs and give the doctors and nurses information about the pressure in my heart) and a few other wires disconnected from me (I cant quite remember what). I needed to have a bag of platelets in order for this to happen as I was running low and would bleed a lot when the wires were removed so it wouldn’t have been safe to do this without having a top up of platelets.
After all this was done, it wasn’t long before a bed was available for me on Todd Ward so after less than 48 hours in intensive care I was transferred to the liver ward!
After a little while of being on Todd ward, the physiotherapist came round to see me again, little did I know she was going to ask me to walk! I was really eager and determined to get up and about as soon as I possibly could so I was really pleased when she said we were going to give it a go! I never knew just how difficult sitting up, moving and walking would be. People had told me that it’s a real challenge and feels very difficult after transplant but I didn’t realise just how weak I would feel. I didn’t feel like I was in control of my legs or movement at all, it was very odd! But I gave it a good go and managed to walk a few steps outside of my room and sit in my chair for a little while again. I felt a huge sense of accomplishment and the physio assured me that this was excellent progress!
Positive steps like this really helped me progress throughout my recovery and encouraged me to stay positive and keep fighting towards getting better every day.
Saturday (3 days post transplant): The surgeon that performed my transplant came to speak with me and see how I was doing. Meeting him was very overwhelming, I couldn’t stop saying thank you and telling him that thank you would actually never be enough. He was a very nice man and really easy to talk to. He asked me about my life before transplant so I told him that I was a dancer and that I’ve been unable to dance and generally unable to live my life for the past two years due to my PSC progressing. I told him that this was the start of me getting all of that back and living the life I have wanted for so long. It was a very emotional conversation and he said that this is why he does what he does.
He examined my stomach and looked at my scar, he was very pleased with how things were looking so far. He then told me a bit about the surgery and the state that my old liver was in. Apparently my liver was extremely enlarged and scarred, it was covering the whole of my stomach and it meant that they had to work very hard to get it out! He told me he was very relieved that I got my call and they got that liver out of me when they did! Although it was a bit scary hearing how badly damaged my liver was and thinking that I’d been ‘living’ with that poisoned, barely functioning organ inside of me for goodness knows how long, I was also actually pleased to hear it all because it just confirmed and validated how bloody awful I felt for so long!
The first few days on the ward were full of ups and downs. First of all, I wasn’t allowed to eat or drink for 5 days post-transplant (anyone who knows how much fluid I drink on a daily basis will understand how difficult this was for me)! I was still hooked up to the PCA (a little pump that I could press every 10 minutes for morphine relief) and I was having other pain relief on top of this at this point so I still wasn’t quite with it and these first few days are a little bit hazy but I was lucky enough to have a few of my lovely friends and some of Josh’s family come and visit me. I was so pleased to see everyone, their love and support made me feel so much brighter and helped keep my spirits up. The pain relief was also making me very cheerful and talkative which was a good thing as I was able to be alert and chirpy and have proper conversations with people when I saw them, although I think they knew it was all down to the pain meds… I, on the other hand, didn’t have a clue! It wasn’t all plain sailing though and for the first couple nights the doctors were keeping a very close eye on me as my heart rate was very high, so was my temperature and my blood glucose was rock bottom. This lasted for about two or three nights and made me feel absolutely rotten, I wasn’t able to get much sleep because I was being poked and prodded every hour throughout the night having bloods taken, observations, ECG’s and having to eat tubes of pure glucose (yummy). They couldn’t really find what was causing all of this, they think it was probably some sort of infection but luckily after a few nights and a few tweaks in my medication this calmed down and eventually things started to settle again on Sunday (4 days after my transplant).
Once things started to calm down and I had a good nights sleep, I began to feel so much better.
Monday (5 days post transplant): I had a much better day! One of the transplant coordinators came and spoke to me and my family about the very important new medication I would be on for the rest of my life. These are the immunosuppressant tablets that will stop my body from rejecting my new liver. They work by blocking the immune system so it is less likely to fight against the new liver, unfortunately, this also means that my immune system is less likely to do the good things it is supposed to do like fight against infections. They also give people a higher risk of some serious complications such as high blood pressure, kidney problems, diabetes and certain cancers to name a few! This is one of the many reasons that transplant teams don’t like to transplant patients too early because the longer you are exposed to these harsh drugs, the more likely you are to develop some of the complications they come with. Obviously for me, and anyone else who is put on the transplant list, the risk of the harsh post-transplant medication and the transplant itself are less than the risk of continuing to live with end-stage liver disease. Anyway, the transplant coordinator talked to us thoroughly about the immunosuppressant’s and the steroids that I would be taking for the rest of my life. She explained all the risks and side effects and told me how I need to take them. The Tacrolimus is my main anti-rejection drug and the most important. She explained that I have to take them twice a day, 12 hours apart and on an empty stomach (1 hour before food or 2 hours after food) and that it’s really important to stick to that and take them at the same time every day. The dose of these and the steroids is fairly high in the first months after transplant but depending how things go for me and how I take to my new liver, the dose will probably decrease over time. The coordinator also talked about life at home after my transplant, such as how long it should take to recover (although it’s different for everyone), things I can do to help my recovery such as regular, gentle exercise like walking, making sure I rest enough and eat a high energy, protein rich diet for the first few weeks post-op. She gave me some time frames of when I would be able to do certain things like going back to work, going on holidays, taking part in more heavy exercise, driving etc. I was also given a list of foods that I will have to avoid from now on and others that I have to be careful with. Some that interfere with the anti-rejection drugs and some that could easily make me very sick with food poisoning.
This was all really important and helpful information and reiterated the fact that I have to put a lot of time and effort into looking after myself very well, especially in the coming months in order to allow myself a smooth recovery but also for the rest of my life to give me and my new liver the best possible chance of a long and happy life together. To me that is the best way I can honour my donor and I will always do my best to do that.
I was told by the transplant team that I was making good progress but my bloods that morning showed that one of my liver function tests was slightly elevated, this could be due to mild rejection so they said they were going to repeat my bloods again first thing tomorrow morning and if it was still elevated I would have to have a liver biopsy to confirm rejection. This was slightly concerning obviously, but the doctors reassured me that rejection, especially in this very early stage, is very common and they can treat it successfully with an intense course of steroids so I was confident that it would be sorted if it needed to be.
Monday was turning out to be a pretty big day for me. A few hours later during visiting hours whilst my mum, dad and Josh were with me, another doctor came round to see me and told me that I was FINALLY allowed to have my nasogastric tube removed and I could start drinking fluids again…HURRAH! One of the nurses removed my NG tube and Josh got a drink of orange squash ready for me. I took my first sip and it was so good that I actually cried. Yes, I cried over orange squash and I am not ashamed to tell you this! I had forgotten what it felt like to actually taste something! This made my day and put me in very good spirits indeed!
Tuesday (6 days post transplant): In the morning, my bloods came back and showed that my liver function had improved again which meant there was no need to do a biopsy! That was a huge relief, it meant that my body wasn’t rejecting the liver and that I could continue with my recovery without having that setback! The doctors said that if things kept going the way they were then I would be able to move back to Derriford (my regular hospital in Plymouth which is closer to home) at the end of the week. This was brilliant news as not only did it mean my recovery was going well, it also meant that mum, dad and Josh would be able to be close to home and come back and forth to the hospital to see me. At this point they had been paying to stay in a hotel and hospital accommodation, living out of bags and not able to get settled anywhere. It would be much easier for everyone if I was moved to Plymouth and also meant that more of my family would be able to visit me. Tuesday was turning out to be another positive day! The good news kept coming as the doctors then told me I could start eating again. To be honest I wasn’t too excited about this prospect because my stomach was all over the place and I really didn’t feel like eating anything at all but I knew that it meant I was progressing in the right way and I knew it was essential for a successful, speedy recovery so I took it upon myself to force some Rice Krispies down my neck, cereal is my favourite food so if I was going to eat anything it was going to be that! I managed to enjoy a few spoonful’s, success!
Tuesday also included the end of my IV fluids and IV pain relief and the start of oral medicines. My surgical drain was also taken out and replaced with a pouch, I was wire-free and it felt great! I was continuing to walk a little further each day and now that I didn’t have wires attached to me it was much easier.
The next few days were the most difficult. My pain relief had been decreased significantly so I started to suffer with a lot of pain. It was a really horrible few days, I felt like I had took a massive step backwards because I felt worse than I did during the beginning of my recovery. Because my stomach was causing me so much pain, I had completely lost my appetite and really did not want to eat at all. Luckily my mum, dad and Josh were very persistent in encouraging me to try and eat small amounts and going to get me whatever I fancied.
I can’t remember a lot from these few days, the pain knocked me for six and I was just sleeping whenever I could. It took a few days to sort but as the days went on I slowly but surely started to feel better. Every day, we were expecting to hear that a bed was available in Derriford and that I’d be transferred there but days went by and this still hadn’t happened. By the time Sunday came, I was truly fed up of looking at the same four walls and the view of the grey building which was about three metres away from my window was really starting to grate on me. When I saw the doctors that afternoon I asked them if I could just skip Plymouth and go home since everything seemed to be going well. They said they couldn’t see a problem with this as everything was looking good and there was no need for me to be in hospital any more really but it would be up to the transplant team to make that decision tomorrow.
The next day, I eagerly waited for the team to come around and let me know how my liver function tests were looking. They arrived at about 11am, examined me and told me that my liver function was continuing to improve. They were very happy with everything so said I would be able to go home later that afternoon. I couldn’t believe it, I was expecting them to say I’d have to wait at least another day just to make sure everything was definitely okay but they said I would have my first post-transplant outpatient appointment in Derrirford in two days time to check my bloods and ensure that everything was continuing to go well. So on Monday October 12th at 3pm, 12 days after my transplant I was discharged from King’s and taken home 🙂
I am now just over 5 weeks post-transplant and I feel incredible! I have an appointment at Derriford once a week to have bloods done and to be examined. Everything is going pretty well so far, I am extremely lucky with how smoothly everything is going at the moment. There have been a few little concerns pop up along the way but luckily they have all been resolved easily. It’s still very early days and these first few months are what they call ‘the critical stage’ so I am fully aware that something more serious could happen at any time. I have to take an overnight bag with me to each appointment because it’s quite likely that my bloods will come back and show that my liver function is elevated at some point and in that case I would have to stay in hospital for further investigations, so I am fully prepared for that to happen. As I said, the difference I feel compared to how I felt before transplant is already unbelievable. I’m still recovering so I’m still fairly weak and I do have to rest a lot still but I’m already able to do more than I could ever do before. I am spending more time going out with my friends, I’m able to go out and go for a walk everyday, see my sister, niece and nephew more often and just enjoy life without feeling sick with exhaustion! MY SKIN ISN’T ITCHY ANY MORE! Not even slightly! The relief of that dreaded itch being gone is more than I could ever describe. My head is so much clearer now that I’m not suffering with hepatic encephalopathy any more, I can think straight and I don’t feel like I’m in a daze 24/7, it’s like a fog has lifted and my mind is clear again. I’m sleeping well again, my skin isn’t yellow any more, the 100s of liver spots that covered my face and torso have disappeared and I just feel like myself again. For the first time in years I am feeling better and stronger every day and that feeling alone is more than amazing. I have got my life back, my chance of having a future is more certain than it has been for the past two years and that is all thanks to one person for signing up to be an organ donor and to their family for agreeing to donate their organs. I owe my life to them. Not one day has gone by where I haven’t thought of my donor and their family and thanked them for giving me the gift of life, I will continue to do that for the rest of my life. The only way I can honour them is to make the most of every single day and every single opportunity, to look after and respect the gift I have been given and that is what I will do.
I just want to finish by saying thank you to all of my wonderful friends, my amazing family and EVERYONE who has supported me in any way during all of this. I honestly feel like the luckiest person in the whole world. I’ve had countless cards, gifts and bunches of flowers from so many people, even people I have never met before. People have been messaging me wishing me well and saying how happy they are for me and every single message, card, phone call, visit etc. has helped immensely throughout my recovery. This would have been a completely different story if it weren’t for everybody’s love and support, it has given me the strength and positivity to fight through every difficult moment and I truly believe things would have been very different without you all. So, THANK YOU ALL!
My family, Josh and my close friends have been amazing, as they always are no matter what but I actually wouldn’t have got through it without them, I really do mean that. I’ll never be able to tell them how thankful I am. I couldn’t possibly wish for better people in my life.
If you have been following my story I really do hope you understand the importance of organ donation and the impact it has on so many lives. My transplant hasn’t just saved and given me my life back, it’s also given my mum and dad their daughter back, it’s given my sister her little sister back, my niece and nephew have got their auntie back and my boyfriend has got a future with his girlfriend. One person did all of that by choosing to be an organ donor. You could do the same for somebody one day too. We will all die one day and when we do we could possibly save up to 8 lives by signing the organ donor register and telling everybody it’s what we want to do, or we could let our organs be buried or cremated with us. There is a massive lack of organ donors in the UK and three people die every day whilst waiting for their call. Mothers, fathers, teenagers, children, people of all ages and all walks of life are dying because too many people, for whatever reason, are choosing not to be organ donors. Too many of my friends are still waiting for their call, existing and missing out on life until it comes. Too many of my friends have lost their lives because the call didn’t come in time. Please consider making a difference and signing up to be an organ donor.
http://www.organdonation.nhs.uk
Thank you so much for reading my story so far. I will still be updating my blog but from now on it will be a blog about post-transplant life, not waiting for that call. I’m one of the lucky ones.
x
waiting for a liver. 
AMAZING STRONG WOMAN SO HAPPY FOR YOU XXX
Whew, wow , amazing
You are truly blessed with such a supportive family
The medical staff and of course that unknown donor who made a life saving decision and the family who honoured that wish.
I can relate to the autoimmune system not fighting to protect one such I have to ensure my family take the annual flu shot so they are not sick due to me. Have an autoimmune chronic disease
One thing I learned when tossed between many specialists and Dr’s was to make a list of all the meds ,dates , dosage so you could give them a copy and one in ones walle
Also a list of all events and dates
Sometimes they have not coordinated all the info so as a patient one is proactive
One of my bloggers was so happy to hear of your progress
All the best
Dear Maxine you look amazing now –
so very pleased that everything has gone so well and you have your life back All the best from Elaine and Maria xxx
Thank you so much for sharing this. I have PSC myself so it has given me a lot of hope to read your story. You’re truly an inspiration and I’m so excited for you to get your life back!
❤
Ella.
Jess,
So pleased that it has finally happened and gone so well. Your courage is an inspiration and Josh isn’t bad either! Hoping to see your Mum soon. Love and best wishes, Steve + Liz Grey x