Monthly Archives: April 2015

Just days!

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Tuesday 28th and Wednesday 29th April

So I did survive my first night back home. Slept all night 😴 So I didn’t have to wake up Robyn, which she made me promise I would do if I woke in the night. Leah made my breakfast before she went to work and was also on duty for my tea as she finishes earlier on a Tuesday.

I spent the day trying to sort my junk that had accumulated while I have been away. Got some of it done, but also came up against hurdles which I just wasn’t able to do. Very frustrating. Also watched quite a bit of daytime tv and didn’t do much else.

Today I did the same as yesterday really but I managed to fit a tiny sleep in as well. Whoopie!!

Two days full of fun!!!!!

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Go home

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Monday 27th April

Robyn has the day off on a Monday so she takes me to Oxford shopping. She wants to look for a dress for a friends wedding reception. Surprisingly, after quite a few shops, and going back to the first one (as always), she finds one she likes. And some nice new shoes too! I look around for some presents for Leah’s birthday which is coming up soon. Reasonably successful. We have lunch out. It’s always a good day when I’m away from four walls for a while.

When we get home I decide it is time for me to stay there. I know my family have started to have enough of looking after me. Time to start looking after myself – and the house again. Although I know it’s going to be very tough and some things I’m just not going to be able to do yet. And lonely. Hard for the kids too as their both back to working full time. But I’m sure we’ll survive.

In lodgings

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Thursday 2nd to Sunday 26th April

I decide to stay at my sisters house as I think this will take the pressure off of all of us maybe, if me and the kids are not left all on our own straight away. I also sometimes stay at Garys. As I am still not very strong at the minute, and especially as the stairs are a major workout for me, my house is not the best place for me to return to as it has three levels. My bedroom is on the top floor, bathroom and toilet on the middle floor, kitchen on the ground floor. Not very practical.

I am home for the easter weekend so everyone is off of work, which works out quite well. Lots of people to look after me!! I am taken out to various places, but am pushed in a wheelchair because I cant walk any distance. Even going out for just a few hours tires me out at this stage.

On the Saturday its Gary’s birthday so we go over to his mum and dads so he can open his pressies! 🎁

On Easter Sunday we are invited to my brothers for lunch. All his children are there too, and their children. You could say quite a few of us!! Even though I am still only eating a few mouthfuls at a time, the lunch is delicious, he does a good job. Then we start our Easter Egg hunt, chaos but fun. 

A lovely way to spend my first weekend out of hospital.

Oh dear, back to work time (for some!) Robyn and Leah work out a plan so there’s always someone with me at first, as I still need someone to get my meals for me, watch me on the stairs! etc.

The days go by. It’s Hannah πŸ‘Ό that normally does my breakfast, she brings it up to me on a tray. I am spoilt! I then have to take loads of tablets in the morning, am awake for a while, have a nap, get up and dressed, sometimes I’m lucky enough to have a visitor (twice!!!) or go out for the afternoon, sit about and watch tv or write my blog, then bed. Not exactly exciting, but I am lucky even to be able to do this.

I have my clinic appointments to attend. When you get there they take your blood pressure and weigh you. Then you wait to have your blood taken. Then you wait to see the doctor. If you have any problems, questions, aches and pains etc, you can discuss it with them. They review your medication, change the doses if they need to and you request more tablets if you need them. As long as there are no problems, off you go. They look at your blood results when they come in the next day and ring if you need to go back for tests or a further hospital stay, or if you need to change medication or diet. Always a relief when you hear nothing from them πŸ‘

I have been very lucky so far and have not had to have any further treatment or tests. Can’t quite believe that actually, though I do think I have had more than my fair share. The one thing I do find difficult is eating. I don’t fancy anything and only eat a tiny bit at a time. (If I eat too much my tummy soon tells me and I feel very full and get some pain, until it digests I guess). This really annoys and stresses my family, as they don’t know what to get for me, and all they want to do is feed me up! ( Especially now, as my weight is going down at the moment). I also have a battle with them about the build up milkshakes I should drink, but don’t want. I am very stubborn.

I am also trying a bit of a lower fat diet to see if it helps my digestion. My potassium is a little bit high, so I’m having to avoid certain foods too. Surely this doesn’t help me to put weight on 😏

On my last clinic appointment, as I am up at the hospital, I visit Marina. Unfortunately she hasn’t been able to get home yet. It is good to see her. While I am there one of the nurses that looked after me during my stay says to me ‘I’ve seen you somewhere before’! As I am looking quite well at the moment she doesn’t recognise me as her former patient. ‘You look very different’. Probably because I’m not yellow any more πŸ˜ƒ

In the clinic waiting area I also see Pat, Alex, Julie – my transplant coordinator. And I have met all my surgeons now. It’s nice to see everybody again. They are your own separate little world while staying in hospital. And I know it will sound weird, but (in some ways) I miss it …

As time goes by I start to get stronger. The stairs are not a mountain anymore. I can get myself a drink, make my own sandwich. I am left on my own. I go back to my own house for a while in the daytime, so I can sort out some washing and do tiny little jobs there (not as much as I want to do though and I do get very frustrated by it).

I am recovering.

Heroes

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Thursday 2nd April

The time has come.

Robyn and Leah pack up all the stuff I’ve accumulated from my stay, I say my goodbyes. My surgeon just happens to be with another patient so I am able to thank him and we have a hug and a photo πŸ™‚ 

I walk out the ward.

After 5 weeks and 5 days I’m back in Chipping Norton.

I would like to thank – 

All the doctors, nurses (of all levels) and all the domestic staff, for looking after me no matter what I threw at them! 

My surgeon, Darius Mirza (who did my first transplant).

And how can I even begin to thank and repay Paolo Muiesan and Hynek Mergental (who BOTH did my second transplant). They saved my life. And only just in time too (which Hynek told me himself). 
Quite simply – I can’t.

My heroes 

New friends

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Monday 23rd March to Thursday 2nd April

Back to the liver ward I go. Have very mixed feelings about this. Think you get used to being in intensive care with your own dedicated nurse. When you are on the ward you press the buzzer and then wait.

I am quite surprised that the nursing staff are still nice to me! As when I was on the ward before I was not very nice to them, shouting, swearing and refusing to have things done. I made sure this time that I apologised to the nurses concerned.

At last I start to recover – very slowly. Still spend a lot of time laying on the bed, just resting or sleeping. But I also start to sit in the chair for longer periods. 

I am in a ward with three others. Marina (who likes colouring), Sheila (who likes sleeping), and Pat (who likes talking!). We all get to know each other and our regular visitors do too. Amongst the pain and tiredness and everything else they do to you in hospital, that we all go through at different levels, we gossip, laugh and have fun. They are the only people that could even begin to understand what I have been/am going through. New friends πŸ‘­πŸ‘­

A couple of us even move wards together. On the day this happened, my nurse in the morning was called Robyn and after I moved in the afternoon my nurse was called Leah. Can you believe that? Do you think that has happened to any other patients before?

After a few days back on the ward the physios arrive again. They take me off to the gym! Bearing in mind that at this time I have only walked a few steps at a time with help. I have to do some squats and calf raises to strengthen my legs. I have to walk up some stairs. I have to walk on my own. They measure me up for a walking stick! Then off I go at last, back to the ward with a wooden walking stick and two pages of exercises to do. I’m exhausted and aching but with a good feeling that I achieved just a little bit more and nice to get out of the ward for a bit.

Then comes the scary bit. ‘I’ll be back in the morning at 9.30 so that you can join our circuit training class’. Was she really being serious? Me, be up and ready for the gym at 9.30 in the morning? That would have been completely unheard of in the few months before my transplant. If I was even awake, I certainly wouldn’t have been out of bed, and no way would I have been fit for the gym. But here I was, out of my hospital bed and feeling nervous, off I went. As it happened in the end they didn’t have enough patients to run the class, one was going home, a couple were not well enough, one had gone for dialysis. Did I get let off? No. I had to do the 7 different exercises, with a 30 second rest in between, on my own, so I had my own ‘personal trainer’!!!

Soon as I got back to the ward and sat in my chair the doctor appeared and said that I could go home. What?! I had only just learnt to walk again, was very wobbly and didn’t feel too confident on my own. As much as I wanted to go home after all this time, I just wasn’t ready in myself. Luckily the physio overheard and backed me up on this. So the doctor agreed on just a couple more days. So then the physio said ‘I’ll come back tomorrow and we’ll do more stairs so your ready for home’. Nooo, really? Why can’t I rest!!!! – I did it anyway and they were very pleased with me.

I then started to get an upset tummy. Every time I ate just a few mouthfuls I had to try and get to the toilet quick. It went on all day. I was exhausted, aching and didn’t feel too great. I was moved out of the ward to a side ward on my own because they thought I could have Cdiff. This was a horrible time, especially as I had been doing so well. The diarrhoea continued, I had even less of an appetite, I lost weight, I was moved from my friends, the exercising had to stop, I was on my own 😰. Obviously I was then not allowed home.

Thankfully the results came back saying it wasn’t Cdiff or any other infection. They didn’t know what had caused it, ‘just one of those things’. It all started to calm down and I was moved back to the same ward as before but now in Pat’s bed as she had been allowed home for a few days but still had to come back for an endoscopy, poor lady, those things are my worst nightmare. Marina was still there. A new lady called Joyce. And Alex (now another new friend πŸ‘­)

Alex was also recovering from her second transplant, but 3 years apart. When we got talking it turned out that she had been in the bed opposite Kate (who I have mentioned in a previous post) when she was waiting for her 3rd transplant. After Kate visited me, she mentioned me in her blog and Alex had actually read this, but didn’t realise it was about me. All very spooky. And also we all live quite closely together! A very small world 🌍

I start to get better. I start to walk without my stick (though still very slowly and unsteadily). My blood results are all good. I am allowed to go home. This time I am up for it.

But one last thing before I leave. I have a massage. The physio’s also do this. A lady called Sally Painting, who also had a liver transplant but has sadly now died, has a trust fund and some of the money from there is used to support this service. So along came George and massaged my legs! Lovely, especially after all my gym visits and stair climbing.

What a great end to my very long stay in the Queen Elizabeth Hospital, Birmingham.

Thatchers Rest

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Friday 17th April

My dad died 21 years ago today. A long time ago but I can remember everything so clearly as if it was just last week. 

I want to give him a mention in my blog and as I now have MY OWN WEBSITE – YAY πŸ˜† (www.mylovelyliver.co.uk – still being edited and updated)

So dad, this page is just for you 🍺

  
 Love you and miss you πŸ’” 

Another setback

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Tuesday 17th to Sunday 22nd March

I couldn’t actually breathe. I was very scared. Pneumonia.

So after what seemed like an absolute age, and various tests being done, off I went back to intensive care. I had to have this mask on as soon as I got there, which was so tight on my face and it felt like I was hanging my head out of a car window going 100mph. It was so horrible and uncomfortable. I was pumped full of more antibiotics, steroids and whatever else, which again didn’t make me feel too good. The mask made my mouth so dry, I just wanted something cold to drink. Everyone just wanted to feed me up to try and get me stronger but I just didn’t want to eat. How can you when your mouth is extremely dry and your led in bed – the food just can’t go down! Plus the fact that the hospital food was not exactly appetising. Anyway eventually the big mask came off and I had a little plastic mask, until the pneumonia went.

I think I was a bit more with it this time, just the fact that I couldn’t breathe, as I don’t remember any more adventures. The drugs obviously did what they were supposed to and I eventually recovered. I should have gone back to the ward but then my potassium level went high for some reason so I was given some more drugs for that, but I had to stay where I was for a bit longer.

As I recovered I was allowed to get out of bed, stand and sit in a chair for a short time and I learnt to walk again. The physios came to help me start doing all this. You would never think it would be such hard work and so tiring. It took all my energy and concentration to just stand at first, my legs were so weak. Even sitting in the chair got uncomfortable after a while. Then there was the walking. To me it was like running a marathon but it also felt so good to be out of that bed and able to do it, even with the physios’ help, as I think I thought at this stage that I wouldn’t ever be able to walk again :/

Some of the nurses in intensive care I didn’t look forward to seeing when one shift ended and the new one started. But most of them were great. Very professional in the way they went about things. And a few were so caring and kind and didn’t mind doing ANYTHING for me. And these were the ones that I got to know a bit, talked to them about my family, their families and anything else. 

It was here that Kate visited me. Kate has had 3 liver transplants (so she’s one up on me!!) Robyn first read about Kate on the NHS Organ Donor Facebook page when I was waiting for my transplant. I had just started to write my blog and so was interested to find and read hers. Robyn kept in contact with her and as she had to come to Birmingham for a follow up clinic appointment, they arranged that she would come and visit me. It was great to see and talk to someone that had been through what I was going through. (There is absolutely NO WAY you can even begin to realise until it’s happening to you. So bloody tough πŸ˜•) To see her looking so well, telling me things that had happened to her, giving me some tips, made me a bit more determined to keep going, as trying to do even the simplest things took a massive effort from me, and sometimes my body just didn’t seem to want to do anything I asked it to. Very frustrating.

I know you helped Robyn and Leah too with some of your advice. So thanks Kate. Looking forward to your next visit πŸ‘

I moved beds a few times while in intensive care but the last move was where I had the most ‘fun’ one night. The male nurse was so friendly and made me so comfortable in the bed (which some of the nurses just didn’t seem able to do). Just simple things like that made a massive difference. He told me about his son and that he and his wife wanted more children but it just didn’t happen and how expensive IVF was. He also said funny things to the nurse that was looking after the patient in the bed next to me and it was just a nice relaxed atmosphere. I was also feeling a tiny bit better in myself by this time so that also helped. I knew that they were looking to move me back to the ward quite soon and I wasn’t sure I actually wanted to leave. I wanted to stay with those two. I felt really safe with them. But I also realised that when their shift ended and different nurses came it just wouldn’t be the same. So – 

Bye πŸ‘‹ intensive care

Crazy Lady πŸ‘Ή

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Saturday 7th to Monday 16th March

Apparently I was well enough to leave intensive care and go to the liver ward. Well physically maybe I was, but certainly not mentally.

I was still having my ‘adventures’. I said I was in a game show. It involved the nurses from the ward, the doctors, the cleaners. And penguins!! Its really hard to explain this one in words but somehow the penguins were used for research into the illnesses! to take blood etc. Some of the other patients led in their beds were covered in ‘fur’. The nurses sucked on chains which I described to people as ‘toilet chains’. I can remember all the peoples faces in this adventure so clearly. The cleaners came round wearing turquoise wellies (like you see fisherman/fishmongers wearing when preparing fish after they’ve just been caught). I kept telling everybody that I didn’t want to play their game anymore. I told the kids that they could play it if they wanted to, but I was just not going to! It was all so weird. 

I also was in a hut used by the Brownies and the nurses there looked after me, which very soon changed into being in a place run by volunteers which they all did as a hobby (again these were the doctors and nurses). They looked after me but also watched and researched wildlife and looked after injured sea birds. I was living this ‘adventure’ when I had loads of visitors one day. Gary, Emma, his mum and dad. My brother George, his daughter Claire and her kids Tia and Freya, his son David. Julie and Hannah. Julie was making me eat this ham sandwich and other stuff and she was told off by one of the doctors because she was stressing me out! At least someone was on my side 😏 I think I was actually still in intensive care when all this happened, so in the wrong post really, sorry!!

Im told it was at this point that I was very nasty to everybody, doctors, nurses, family. Shouting, screaming, saying horrible things, refusing to have things done. 

Then I got pneumonia …

Wednesday 4th to Friday 6th March – Awake πŸ˜³

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Still in intensive care but I woke up!

From here I start to remember certain things and certain people visiting. I remember being so hot and everyone that visited had to fan me continually or I didn’t want them to come! I know they used to really complain about how it made their arms and shoulders ache. I bet they all dreaded coming in to see me when they knew they had to do that all the time. Also if Robyn, Leah or Gary said they were going, or sending someone else in or whatever, we all had to ‘pinky promise’ as to what time they would be back next, or how long the other people coming to see me would be etc (I guess that was one of my crazy ideas?!) We had to hook our little fingers together and say ‘pinky promise’!!!! I mean, where on earth did that come from? I’ve never heard of that before in my life.

I also was aware of some things that were going on and being said around me, but my head somehow turned them into very elaborate and detailed ‘dreams’ or ‘thoughts’ maybe. I don’t really know what you would call them.

One example is about me having a tracheotomy as a way to remove my breathing tube. The kids and Gary, doctors and whoever else, must have been talking about it when next to me and I obviously took it in. In my head there was no way Gary was going to let me have this done as, typically for him!!!!!!, he had done lots of research on it and it was a new thing being done in this country! Also he knew someone that was a paramedic or something and this man got out his role of knives (like some builders have their tools in) and was showing the doctors, saying that none of the knives would be sharp enough to do the job properly … 

As it happened, in ‘real life’ I didn’t need this in the end. Which was kind of lucky for my family as they had been asked to decide if they wanted me to have the tracheotomy or not. They eventually agreed that they were going to leave that decision to the doctors to make, who apparently just whipped out my tube!

I did have some adventures while I was in intensive care …

My friend Jackie visited with her son Tom. (He fanned me more or less the whole time he was there). He’s so nice. I can remember talking to them about normal things like Toms beard, Jackies aunty, the Co-op which is where they both work and her other son Andy too and also me (but Toms manager in a different shop!) Anyway in my head they were visiting me while I was in Oxford living with the doctors and nurses! One of the male nurses was looking after me there while working from home. Someone came round and was taking all our breakfast orders and I can remember asking if I had to pay. The nurse was sorting the dishwasher out, setting it to clean with some special stuff. The cleaners from the intensive care ward came round. I watched the doctors and nurses leaving for work and coming back from work and even getting ready to go out for the night! So going back to Jackie and Tom’s visit now, even though I talked to them sensibly at times, I probably talked a load of rubbish to them as well!

When Leah and my sister Lynda visited me I was on a train! I thought we were going out for the day and I asked Leah to get my jeans and my Converse shoes from home. I remember them saying at separate times that they were going to get a cup of tea and I said to them to make sure they were quick and got back on the train before it left. Apparently I was not very nice to them, swearing and shouting at them – sorry πŸ™Š. The doctors and nurses from intensive care were also on the train, some going to work. One of the male nurses was doing renovations to the train as all the seats had been removed and it was being updated, and another was a PE teacher who was going in to work. A lady, who was my sister’s boss’ wife, at first ran the children’s nursery by the train station, then she was a school teacher going to work on the train. (In real life, when I became a bit more with it, she was actually one of the group of doctors that came round to see me!)

One day we had a lot of snow! This time i was living in something like a massive hollow ball (which is where I was when Julie and Hannah visited me once). It had frozen up in the cold weather and I couldnt get in! I was very ill and lots of different people were trying everything to get me in there … a man was there with his wife (in real life he used to be a vet in the town and they bought our second house from us!!), both my brothers came at different times trying different things, Robyns boyfriend Tom came, Emmas boyfriend Jamie came, when he had finished college! (which took him ages because of the weather) and then he did something with the trees. Gary and Leahs boyfriend Jack were some kind of crazy comedy double act and they kept popping up together in different places – so weird.   Other people were just waiting around in the cold snow and watching. Also next to all this going on was a stage with a lady singing and someone made an announcement on the radio that more help was needed to get me inside where I should have been. People were also agreeing on the radio to send money donations. And Toms band Dance a la Plage were going to play for free to raise money for me too. So much went on in that ‘adventure’ of mine’!