It gave me such joy and satisfaction putting it all together to jolly up the PD/Transplant clinic at St.George’s. It took me many plenty of hours to create – but that was ok because lockdown had just started and it was a jolly good way to spend my time! The idea came to mind when I went for my Peritoneal Home Dialysis training at the Kew Baxter’s Education Centre. I was genuinely surprised at the amount of dialysis equipment we all have to use and dispose of in one day: “There must be something that can be done with it?” shouted my inner Grayson Perry!!
Looking at each clip and cap in detail at every angle – must have looked barking mad! By the end of the 3 days training I had decided all the bits would be turned into Christmas decorations! I started saving them up literally from day one of plug in and very quickly had a whole bucket full of bits to play with – then out came the glitter, glue gun, paint, gems – you name it… and off I went. Since the end of March my weeny home has been covered in glitter – I am still sweeping it up even though the tree is all packed up and ready for delivery in December! Making the decorations really helped me with dealing with the sorry state the planet is in; as daft as it sounds I’m so proud of the whole project and can’t wait to see the tree in place this Christmas.
Since the end of March my weeny home has been covered in glitter – I am still sweeping it up even though the tree is all packed up and ready for delivery in December!
The dialysis training was excellent – anyone who has yet to go please do not be worried or frightened: from the moment the front door was opened I was greeted by extremely jolly and pleasant nurses (all in civvies so it didn’t look to austere) – what a wonderful bunch of women: kind, patient, humorous, open, welcoming and of course most knowledgeable!
There were only six of us on the course and all had our own bedrooms with en-suite. We were shown around the living quarters where we could hang out, the kitchen (which was stacked to the brim full of really yummy food that we were allowed to indulge in at any time) and education/training room and the garden. It was totally self-contained, wonderfully clean and as per the nurses: most welcoming. The one thing I did notice is that they were very sharp on picking up when one was getting mentally exhausted and were sympathetic to it which was nice.
You were allowed to take a partner, friend or relative with one for the three day course which is very nice. I chose not to as though as I felt that no one would who was not themselves going on dialysis would really want to sit in on the classes. If you go alone it makes you more sociable with the other patients and the group feeling kicks in pretty fast. Anyway, only CKD patients would understand the sillier sides of the treatment, such as the daily compulsory laxative taking, comparing wound sites etc! It was good talking to others who were going through the same things.
The centre catered for everything – advised us to stack up on eatable goodies and drinks before ‘plugging in’ from the cornucopia of delights left for us in the kitchen fridge, freezer and cupboards – then, when we were all plugged in, a lovely lady (who looked after us during the night time) would come around seeing if we wanted a cuppa or needed her to prepare us some food. Honestly, the ladies working in that place could not have been kinder if they had tried. Off we all went at the end, dragging behind us a huge suitcase which housed our own dialysis machine. I left feeling 100% confident in my ability to set up my machine and then plug myself in of an evening.
The other gem of knowledge I got was from one of my first CKD nurses: ‘talk and listen to everyone in the waiting room – but don’t do as they say unless you have run it past your CKD team’ – we are all completely different with different combinations of ailments putting us where we are now.
Someone said to me once ‘the smaller the better when you are on dialysis’ – they meant ones living space. How right they were! I have a drain line that goes into the sink in my bathroom (and the drain lead is long enough to reach), my extension lead that attaches me to the machine is generous enough for me to get to the freezer to get a lolly (imperative!) and allows me to sit on my sofa and watch television (eg plug in time is not compulsory ‘go to bed’ time!!). It was very good advice indeed.
The other gem of knowledge I got was from one of my first CKD nurses: ‘talk and listen to everyone in the waiting room – but don’t do as they say unless you have run it past your CKD team’ – we are all completely different with different combinations of ailments putting us where we are now. What is good for the goose is not necessarily good for the gander (in fact it could be downright dangerous). If in any doubt ask your renal team – I have always found them to respond to telephone calls and or emails really quickly and efficiently.
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