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 😕) 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 👍

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 👋 intensive care

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 …

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 🙊. 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’!

Sorry guys, but you will have to read my two daughters’ blogs for all these wonderful details!

www.pinnysdaughter22.wordpress.com

www.leahhlouu.wordpress.com

I was elsewhere …

So they came to get me at 4am, leaving Robyn, Leah and Gary in my room. 

I can remember talking to my anaesthetist and asking him what would happen if I didn’t actually go to sleep and could feel everything that they were doing to me!

😷

And after that – 😴 for rather TOO long for my liking

I can remember that I didn’t feel too well. 

I went out with Gary and his daughter Emma to look at a car that she was looking to buy. As I wasn’t feeling too good I sat in the car and waited while they sussed it out and went for a test drive! 

Then we went back to Gary’s mum and dads and had a cup of tea and I had a rock cake that Gary’s dad had made – yum.

In the car on the way home my phone rings …

I swear, I cry, I text the kids and Gary drops me off at home to get my bags ready. Robyn, Leah and me all cuddle and cry and don’t know what to do next. Gradually we pull ourselves together and all start to get our bags ready, well me and Leah mainly. Robyn’s is already packed, the bag rather big and crammed with enough stuff for a 2 week holiday 😃

The co-ordinator rings back after giving me about 10 minutes for it to sink in, and tells me where to go when we get to the hospital and other information like that.

(I know I ruined everyone’s plans because Robyn and Leah were almost ready to go out and Emma should have been staying at Gary’s house for the night. So sorry everybody for that).

I think we left the house at about 8.30pm and got to the Queen Elizabeth Hospital Birmingham probably about an hour later.

A nurse called Robyn (can you believe) came to ask me lots of questions and filled in the paperwork. Then we all decided to try and get some sleep!! Gary was in an armchair. Leah propped herself up on the floor between the wall and the window, and also tried the bed and even the sink! she tells me. Robyn was on a chair with her head resting on MY BED – least I was comfortable!

But I don’t think too much sleep was had.

Have to keep my blog in order – bit of OCD 😃 

Oh and because of this ‘OCD’ it does also annoy me that some of my posts move right over to the left like this one has!

I haven’t a clue what happened on these two days now but it seems like I probably wasn’t feeling too great …

Well the fluid didn’t disappear for me on my birthday 😦  but I was spoilt tho.

We went out for ‘morning coffee’, my posh sister’s favourite thing to do.

Then we spent a few hours at a decoupage party! It was great fun. We could all choose an animal as the base, then we put our pinny’s on, sat round the table and off we went. Tearing and sticking. Robyn had done a secret picnic for everyone and this was all put on the table for us and we could dig in while we were sticking! And while a lot of silly chatter was going on. I did an owl but he’s not finished yet  



After that we went back to my sisters for a cup of tea and Robyn had decorated me this lovely birthday cake.



It’s supposed to be my birthday. Give me a break pain 😦 And GO AWAY fluid

Sneaked into Robyn’s bed again last night. Think I got a good nights sleep then. Then when she was getting ready for work first thing in the morning I think I was talking a bit of nonsense to her, I’ve finally gone mad!! 

Bit of a boring day today really, just did some jobs about the house. Oh I did go to my sisters for a cup of tea.

It seems that when I sit still for a while, especially during the evening, I start to get pain in my back and then under my ribcage. Seems to be right where my liver is. I can take this for so long then all of a sudden I just need to go and lay down, and I normally get relief from it this way. Heat packs/hot water bottles I find are also good. Don’t know if this is because I have a bit of fluid build up or whether it’s just my liver. Horrible having to live with this tho.

But I’m sure things are only going to get worse …