Tuesday 7th July

The doctor came to take my blood at 4.00 this morning! and blew the vein in the back of my hand. So painful. Then she still had to find somewhere else to go so they actually had some blood to test. The vein got more swollen and painful as the day went on.

The doctors were short staffed today apparently but eventually one did come round much later than usual. My blood results were all getting very slowly better but my kidney blood results were not very good today. Probably as a result of the diarrhoea. I told you they would go all over the place. So I was going to have two bags of fluid today. Great. More time attached to that drip stand.

The doctor also told me that they were going to try giving me my antibiotics orally now, the next stage in trying to get me home. If my temperature was to go back up, I would have to go back on to IV antibiotics and they would have to do more investigating. So they were to be checking me regularly. Fingers crossed.

A friend that has been back in the Queen Elizabeth for a while had taken a turn for the worse and was back in critical care. She is currently waiting for her fourth liver transplant. A lot of my thoughts have been with her and her family today at this awful time. Keep strong Kate. I keep telling myself how incredibly lucky I am.

The nurse didn’t give me my anti rejection medication this evening. When I questioned this she said it had been stopped. This worried me a bit as no-one had told me. This meant I was not taking any at all as my aziathioprine had been stopped for a while. I asked her if I should just take it myself then. She didn’t advise me to but she had no idea why they had been stopped. She said I can look in your notes, see if anything has been written there. All it said was that the doctor had suspended it. So I just needed to wait until the doctors came round in the morning and query it with them

As usual, late in the evening, they decided it was time for me to have another bag of fluid. The nurse tried and couldn’t get it to work. She got another nurse to come and have a go, she couldn’t get it to work. I think eventually at 2.00am, after a few of them had a try, they decided that the drip stand/machine was actually broken and they needed to find another one. Once sorted I was finally left alone.

Today was a day of no visitors. A very long, quiet day. Not good for the state of mind.

Monday 6th July

As I had temperatures during yesterday they couldn’t give me my blood transfusion until they had gone down. So sure enough at 12.15am (their favourite time of day to do things!) they started my first unit of blood. They told me they would be coming every half an hour to check my observations. Great! And that is what happened. Until 4.00am when it finished. Then they were back before 6.00am to take them again. The nurse had only just left when a doctor arrived to take my blood. Rather a sleepless night! Very tired 😴

Then they gave me my next lot of IV antibiotics, then my next unit of blood. (This time they checked my obs just twice during the whole time! I don’t understand. Do they look for extra work to do during the night or what? Good for them, but the poor poor disturbed patients 😨)

Obviously I was not going to be going home today (it was suggested I might last week but things had changed). I was getting so fed up of everything and being attached to this drip and hardly being able to move all morning was not making me in a good mood. Robyn visited and told me off for being so grumpy!

She always comes very prepared when she visits, and she had made her lunch and tea to bring with her and brought herself some jobs/paperwork from home so she didn’t waste any of her precious time. I asked her why she was so organised, ‘this is the way you are supposed to live’ she told me! Role reversal going on I think

She does spoil me though so I’m not going to complain. She gives me lovely little massages (which I don’t know if I’ve said before, but I think something like this should be offered to patients regularly, as when you are just laid or sat on the bed a lot, and left on your own a lot too, it feels absolutely great. Good for both physical and mental wellbeing). Today she was also messing around with my hair making me feel very sleepy.

  
We also went down to the main entrance for a quick walk about and to the restaurant and bought a cup of tea (which I didn’t like of course!)

The diarrhoea had started again today. Of course I think as a result of the IV antibiotics being started again yesterday. This was going to be another setback as I just can’t get myself to eat or drink very much when I have this problem.

Add this to hardly any sleep and my state of mind and my blood results were going to go all over the place again. Nooooo 😦

Saturday 4th to Sunday 5th July

The doctors did their rounds and I asked my questions like I always do. I normally write them on my phone or I forget when eight of them are all stood around the bottom of the bed looking at me! My main worry today was that my cough and the fluid round my lungs might turn into pneumonia, as that is an extremely unpleasant thing to have. The main doctor told me not to worry, that wasn’t going to happen. I was doing well, looked well, but the white blood cells just still needed to go up some more before it was safe for me to leave. Maybe Monday? I was now allowed out of my room though. Woohoo!

Leah and Jack came to visit. We had quite a fun afternoon. I decided that when they left I would walk down with them. So we had a bit of a walk outside as it was a lovely sunny evening and Leah took a couple of pics for her Facebook page.

  
Off Leah and Jack went to find their car, leaving me behind. You don’t know how difficult that was for me to walk back through those doors and get the lift to the 7th floor. Horrible, horrible, horrible.

I had a very restless night, woke up many times to find myself literally wet with sweat. Yuck! Temperature was over 100.

Oh no. Because I kept getting these temperatures the weekend doctor decided he wanted to start me on some antibiotics and that I also needed some blood because my red blood cells had now gone low! 

Sunday. Already had unsettled tummy but the IV antibiotics still started again

Leah had picked a roast for my dinner but when it arrived it did not look very appetising. There was no way I was going to eat it. As Julie and Hannah were here they brought me some vegetable pasta bake from the restaurant. Much nicer. Thanks 😀. Julie had also made me a lemon drizzle cake. Very yummy. Gary visited. Because it was nice yet again we all went for a walk outside the hospital. It was lovely to feel the warm sun on me. We just got back to the ward in time because then the thunder and lightning ⚡️started. A very quick change in the weather. 

  
Kept these two amused anyway.

Robyn and Tom visited later after their shopping trip to Birmingham! 

Then off they all go, leaving me behind again 😦

Friday 3rd July

My blood was taken first thing, before 6am and that was it. Nothing else was to be done. Do I really need to be in here. It all seems so crazy. No chance of home though. White blood cells still too low for that. Yet another weekend to be spent in hospital. Am I going out of my mind? Quite simply yes.

The only thing that’s changed today is that I now have an annoying cough which gets worse when I try to talk.

Was due to go to a friend’s wedding today. Obviously that wasn’t happening. Just something else for me to feel down about. 

Watched some of Wimbledon on the TV. And that was about it for today. A very boring and horrible Friday.

Thursday 2nd July

The doctors came round this morning and said all they were going to do was another ultrasound on my liver and a chest X-ray, and observe me. No medication was going to be given. After everything the Horton in Banbury had thrown at me, this seemed a bit odd. I was pleased though, I certainly have had enough medication and procedures done on me to last a lifetime.

The man who did my ultrasound today had also done my ultrasound when I was in Critical Care, we both recognised each other. He was very good and explained everything to me, it all looked fine. Both my hepatic artery and portal vein were both doing what they should! That was reassuring again.

Came back to the ward and then was collected for X-ray. They didn’t tell me anything about that, but it’s always over in a flash.

Was just left then to entertain myself for the rest of the day, with blood pressure etc being taken every now and then.

Relaxing on my bed in the afternoon I heard an ‘hello’ and Dr Mergental was stood there! He had seen my name on a piece of paper somewhere so thought he would come and say hello to me. How nice was that? I do like that man.

Robyn came to visit. What delights were in store for me this time. Oh yeah, she drew on my face with a black felt tip pen!

Then Marina’s sister brought her round to see me. She’s back in ward 726, filling up with fluid 😦 Marina was my ward mate when I was recovering from my transplants and we’ve kept in touch. It was good to see her, shame though that we’re both back in the QE.

I so want to get out of here. But no chance until my white blood cells have gone back up a bit. Still too risky. Very 😕

Wednesday 1st July

Happy 21st Birthday Jack 🎉 Hope you have a lovely day.

I didn’t really need to say anything to the doctor about how fed up I was because when he came round he told me that I was being transferred to Birmingham. They had decided that they wanted me there. I think my family were quite pleased about this. I wasn’t, it makes visiting so much more difficult.

So I spent the day just waiting. It was a very very hot day (in fact turned out to be the hottest in a long time I think!) and I was very hot. I ended up having to have the nurses’ fan from their desk because my heart was racing a bit. That was quite lovely actually.

I was off. One minute they didn’t know a time I would be leaving, the next minute they were waiting for me. I was to go by ambulance 🚑 but not with the blue lights flashing and sirens blaring. It was quite a hot sticky journey, there was air conditioning but it wasn’t really doing much. My temperature was still up. It was a bit uncomfortable at times. A long journey (took almost two hours) in the back of an ambulance on a hot, hot day. I could think of much better things I would rather be doing. We got there in the end (just before 6pm I think it was) through loads of traffic. The two lady paramedics were very nice so being able to have a bit of a chat made it a bit more bearable.

I was in ward 727 side room 7. Top floor, penthouse suite I call it!!! When I have been in the QE before I have been in ward 726 and got to know the staff there, so even this was annoying for me. If I had to be stuck back in here, it would have been so much nicer having nurses around that actually knew me.

A nurse took my blood pressure etc and eventually a junior doctor came, took some blood and put a new cannula in. She said the registrar would be round to see me shortly. Well, as always, it took him quite a few hours. He just said that he would be gathering all my results together really and having a good look through them. 

Nothing was going to happen until the morning at this time in the evening.

Tuesday 30th June

A doctor woke me at 4.20am. I don’t mind if there is a definite purpose for this, but there really didn’t seem to be one this time. He just listened to my chest, asked me if I still had diarrhoea and any pain and that was about it. I really could have done without this early start after not feeling too great yesterday.

It does seem to be the doctors and nurses favourite time to do things. They take your blood pressure, pulse and temperature so early, then it’s blood to be taken. I guess there is a good reason for all this. But us poor patients don’t get much quality sleep! 💤

I was feeling much better again today though and I decided to be brave and try some toast again, as it was cold before. The lady promised me it would be hot and it was. I quite enjoyed it.

Then this lovely but slightly crazy doctor came round. Because of the fluid by my lungs, he wanted to have a look himself and possibly drain some off for testing. So he did an ultrasound right there in my ward and gave me quite a detailed lesson in where everything was and how you could see tiny bits floating around in the fluid, and when I took a breath how my diaphragm moved up and covered the area we were looking at. It was really interesting. Of course he decided he did want to drain some off if I was happy with that. I said I just don’t want to have anything done unnecessarily as I have been through enough and he said he understood that but really did think it would be very useful. So I agreed He was going to come back later in the afternoon after his clinic.

I also had a CT scan and the fluid I had around my spleen had apparently moved to my pelvis!

Even though I was waiting for this doctor to come back and I was scared at what was going to happen to me, I still managed to eat some of my ham salad for lunch. I was quite pleased with myself.

Well the time came and along came the crazy doctor with his ultrasound (which he was going to use to guide himself into the right place) and all his other equipment. But first he had more important things to do, he tried to do my Solitaire puzzle which Hannah had bought for me. He had never seen it before so I explained what to do and it really looked like he was going to complete it. I thought that can’t be right, imagine completing that on your very first attempt – but he didn’t in the end. He said he was now in a mood and was going to take it out on me with the procedure!!!!

So I had to sit on the edge of the bed while he drew a big arrow on me, put iodine all over my back, injected anaesthetic then put the needle in – ouchy 😦 He was very good, professional and kind.

Later I finally laid back and relaxed and had a think. Even I’ve had enough now and I think I can take quite a lot. They are doing so many tests, blood tests two or three times a day, giving me so much medication, and they still have no idea what is wrong?! Tomorrow I am going to tell the doctor this and I would quite like to know what on earth is going on …

Monday 29th June

Today wasn’t a very good day for any of us. Maybe the heat didn’t help?

It’s Robyns day off on a Monday. She was coming to see me but she also had to contact her insurance company about her crash yesterday and I think it was rather stressful! The insurance company told her that she couldn’t drive her car and that they were going to take it away tomorrow which meant she had to get the bus over to see me.

Leah was incredibly busy at work. She had made an effort early in the morning to do her hair and she put a nice dress on, as it was going to be a nice day, and then when she got there she had to put her scrubs on and her hair up because she found she was going to be dental nursing today, not sat on reception!! Poor you Leah.

Leah had found three baby birds over the weekend. Her bedroom window is underground so she has a hole cut out in front of it in the garden to let the light in. Hard to explain that really. But leaves (and also rubbish) gets blown down there. A bird must have decided that it’s a good place to build a nest as when she looked out she could see them, in a mushroom box!!! She was worried about them and wondered how they were they going to get out?! Then she spotted the mum, so hopefully they will all fly off when they are able to. Or a rescue might have to take place …

I forgot to say that when Leah visited before with Hannah, I was asking any of them for a lovely neck massage as it had been really hurting all day. None of them were keen to do it for me. Then Leah dangled this thing in front of me and said if I licked it, she would give me a quick massage. I thought it was an old apple core at first but on closer inspection I saw it was a bit of skin off my chicken 🍗 that I had eaten for tea! It was safe. So I gave it the quickest of licks – anything for a massage! My children – aren’t they lovely to me?

My brother Peter called in for a quick visit. He came with hardly any money for the car park (silly man!!) but it was nice to see him.

Robyn eventually arrived to see me, stressed out, so we had a cuddle. I was not feeling too well today as I had to constantly keep going to the toilet (I think still as a result of all the antibiotics, and which they were still pumping into me, many times a day) so my tummy was feeling a bit unsettled and I didn’t want to eat or drink, even worse than normal. For the whole of Monday I ate a few cornflakes, 4 bits of macaroni and 1 cream cracker with a little bit of cheese on top. Hmm not good.

Then Robyn decided to get a nosebleed!! Probably caused by the stress she was feeling and the heat. While that was happening Leah arrived. And that was Robyn’s lift home sorted as she had come by bus.