Monday 4th May

As it was a nice day my brother George decided he was going to fire up his barbecue. So off I went with Gary at lunchtime. His kids were there with their kids!! (but where were my kids 😥 ) Anyway we had a good afternoon with lots of fun and good food 🍔🍗

Sunday 3rd May

This morning it was arranged that me and Gary would meet my two sisters, 

  
– lovely, but mad –

and Hannah, for morning coffee in Cafe Nero which has just opened in Chippy. Turned out to be tea all round though! Some silly chatter went on for rather a long time and the cups kept being refilled. 

Then everyone started to get a bit hungry (and Hannah bored!) so we started to have very long discussions (inside and outside the cafe) about where to go next and if we were going to get anything to eat. Trying to please everybody NEVER works. Stressful 🙀

So we all ended up (after picking Emma up) at Wyatts garden centre because Lynda wanted some compost. Now the compost was either £6.99 per bag for one sort or three for £12 for another sort. Lynda didn’t want 3 bags but also didn’t want to pay £6.99 for 1 bag when she knew she could get three for £12. What was she going to do with THREE bags of compost she said. So she left it. She’s a crazy woman! Must be where I get it from … 

Anyway we did get some nice lunch there so it wasn’t too bad!!!

After that me, Gary and Emma went to Charlbury to see his mum and dad. It was decided to visit yet another garden centre where Emma’s boyfriend Jamie was working. So we all squashed into the car and off we went. More tea was drunk!

A nice day followed by a miserable evening. 

Add to that the fact that the tv isn’t working. I just sat in silence basically, did a lot of thinking, daydreamed and eventually went to bed.

Saturday 2nd May

I stay at Gary’s Friday night so this morning I get to have a bacon sandwich. Yummy 😀  We go for a bit of a drive around in the afternoon and do a bit of shopping. In the evening I actually watch Britains Got Talent!!

That’s Saturday’s entertainment 🍞 🚗 👛 📺

Thursday 30th April and Friday 1st May

Clinic visit today. Always makes you think ‘wonder what will happen today?’ It’s Leah’s turn to drive me up to Birmingham. She got a bit cross with me though because when we were sorting my tablets to see if I needed to order any more, they were all muddled, and there were empty boxes and packets. Not for me though, I knew exactly what was what, but she didn’t like it and I got told off!!!

So I saw my hospital friend Pat and had a little chat. Got weighed, had my blood pressure taken and then went in to see my surgeon. My liver blood results had improved again from the last time so good news again for now. My potassium is still a bit high so have to drink 2 litres a day to try and help my kidneys to get rid of more of it!

We then go off to the restaurant for lunch as we have some time to kill before my dietician’s appointment. I can ease off the low fat diet a little now as my tummy seems to be settling but still need to avoid high potassium foods. I also had to do a test for hand grip strength. The number they look for women to reach is low twenties, I got 11! What a weakling 🐭 So I now have to try and eat lots of protein to build up my muscles and strength.

I can go home again.

On Friday I get to go out again. But this time to a garden centre and a DIY shop. 🌻🔨  Just as we’re about to leave Banbury I get a phone call. Uh oh. My kidney function blood tests had gone higher than last time. So I now have to keep drinking lots and instead of going back to clinic in 2 weeks I now have to go again next week. This news did upset and scare me a bit. I just don’t want to have anything else done. I have been through enough and I can’t do it any more. I thought things were going too well.

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!!!!!

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.

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 👼 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 👍

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 😃

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.

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 🙂 

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 

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 👭👭

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 👭)

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.

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 😆 (www.mylovelyliver.co.uk – still being edited and updated)

So dad, this page is just for you 🍺

  
 Love you and miss you 💔