Monthly Archives: September 2018

Bingo

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Saturday 22nd to Sunday 23rd September

Saturday was a rainy day 🌧

In the evening it was time to watch another Anthony Joshua boxing match 🥊 !

Sunday evening was spent at the bingo! Something different to do for Hannah’s upcoming birthday. First of all I got told off for talking while the numbers were being called out (I was only trying to find out how the touchpad worked) and then trust me to make an idiot of myself as well and shout out for a false claim! Yes I had two full lines crossed off but they needed to be on the same card, not different ones! It’s not like I’ve never played the game before, I know what you have to do. Dunno what came over me 🤣 I’ll blame it on the touchpad we were using, it did confuse me. Or maybe I’ll just blame it onto brain fog 🤪

Anyway, it seems like I got punished for doing that because each one of the four others I was with won some money for getting lines or full houses (Robyn even won just over £70, lucky thing 💷) – but not me, I won nothing 🙃

I thought I would share with you this interview with Dr James Boyer which I have come across from the American Liver Foundation, 50 years of treating PBC.

And for something completely different – The Golden Bridge

Mop Fair 🎡

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Friday 14th to Friday 21st September

Chipping Norton Mop Fair was in town this weekend.

“The mop fair was also originally known as a hiring or statute fair, and was where farm workers and servants would gather with an item depicting their trade, and a tassle on their lapel, which became known as a ‘mop’.

Employers would come and choose the worker they wanted to employ for the next year, and would give them a ‘hiring penny’ to signify an agreement. The worker could then spend the money they had been given at the fair’s stalls.”

I wonder what they would think if they could see the kinds of rides that come to the Mop Fair now!

I’ve got nothing else really to report apart from the fact that I spoke to Dr Fisher over the phone about a few things and he had looked at my blood pressure results from when I was wearing my monitor the other day and he said it was fine, the average was not too low, so my medication for this just stays the same. But he does want to check my bloods as I’ve been feeling SO tired and have been struggling a bit 😖

Exercises

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Saturday 8th to Thursday 13th September

It turned out to be a bit of a ‘reminiscing’ weekend!

On Saturday we had gone to a shop in Witney. I knew we were somewhere near so I got Gary to take me back to the little car sales garage where we had gone one Saturday afternoon back in February 2015. Well I stayed in the car that day, I was feeling very ill, while he was looking round all the cars with Emma. It was then, when driving home in the car in the early evening, that I got the call from the Queen Elizabeth Hospital to say that they had a liver for me 😖

On Sunday we went for a walk around in Oxford. It turned out to be a lovely warm and sunny afternoon. It was also Open Doors weekend. This is the time when “many of Oxford’s significant contemporary and historic buildings open their doors to the general public, many of which do not usually do so. Discover hidden areas that are normally closed, climb tall towers or explore secret rooms.”

While we were just walking around there we met and said hello to the consultant that, after a couple of hospital stays to drain the ascites (a build up of fluid) told me that it was looking like transplant time and she was the one that contacted Birmingham to get the process started 😖

Sunday was also International PBC Day, a time to raise awareness. Thank you to the British Liver Trust for sharing my story again.

I still haven’t been feeling 100% and just so exhausted. I really don’t know why I agreed to work overtime one day 😩

I finally had my physio appointment for my hip. Apparently it was noticeable that I had much more movement on the other side. I’ve been given some exercises to do to see if that helps – just got to get myself to do them now …

And I finally had made the appointment to have another blood pressure monitor fitted. If I remember rightly it’s just to check how it’s doing and if I need to change the dose of medication I take. When she took the first reading it was very low. I think it did go up a bit throughout the day but as it blew up on my arm every half hour I really didn’t bother to have a look at every reading. I’ll just wait for the results.

😴😴

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Friday 7th September

This is my two precious girlies back in 2015 when they were waiting for me to come out of theatre from my first transplant.

They were quite simply amazing during the whole time I was very ill. It must have been so tough for them. But they kept me going, rubbing my legs, ‘fanning’ me as I was so hot, whatever else I demanded, I was not an easy patient during my crazy times. They gave me a good telling off for this too 😖

One of the reasons I’ve picked this picture to go on here is because it reminded me of myself now, still sleeping on the sofa! Normally I sleep really quite well on it but last night I just could not seem to sleep for any length of time, I kept waking up, I needed the toilet, I was so hot! Not what I needed really as I had decided to try and go back to work today after not being well this week. I survived it! 💪 😀

So if you would like to become someone’s hero, why not register here right now on the NHS Organ Donor Register 👍

Did you know?

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Wednesday 5th September

I have been asked to help to promote the OrganOx metra during Organ Donation Week. If you would like to find out more go to their website www.organox.com

I am very happy to help with anything that may make it possible for more people to get the liver transplants that they desperately need.

Did you know that organ donation is much less likely to proceed if you have not joined the NHS Organ Donor Register and discussed your decision with your family and friends. Over 80% support donation but only 38% have joined the Register. If you would like to join just click on the link above. (Yay, I managed to get the links working again!)

If you are still unsure have a look at this myth busting information which may help.

By the way, look out for me tomorrow … !

🤢

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Tuesday 4th September

I’ve been to work but I’m really not feeling very well today 🤢

But two people I know personally and who are waiting for transplants are both in different hospitals at the moment feeling not very well at all. All my thoughts are with them.

If you haven’t signed up already, please join the NHS Organ Donor Register. (For some strange reason I am having problems with my iPad tonight! and I am not able to insert the link to make things easier for you, so please go to http://www.organdonation.nhs.uk and you will find the Register there).

This is me just after my transplants in 2015!

🤯

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Monday 27th August to Sunday 2nd September

A bit of a difficult week.

I was feeling extremely stressed. I had no concentration whatsoever. This was very frustrating. And I was even more exhausted than I normally am!

I really had to make myself get out for my walks, but I’m sure they did me some good!

I spent another three nights sleeping on the sofa because of those ‘noisy’ birds 🦅 Their doing my head in now 😖

And now it’s become September 😱 The X Factor’s started back on the tv, Jonathan Ross’ chat show too, it’s dark by about 8.30. And the signs warning of the road closures for Chippy Mop Fair have gone up in the town! Apart from the fact that the weather seems to have cheered up again 🌤, Winter seems to be slowly heading our way ☹️