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The Dangers of every day being the same… by William

When we are responsible for our own treatment at home there is a danger we will get complacent or fed up with the monotony of our treatment regime. 

We can deal with this by altering our treatment start time, length of time on the machine and by going out and doing fun things. 

During the current virus situation where we have been asked to stay at home, and the ability to make the days different has become difficult, with them all merging into one. 

There is a danger here that treatment burn out could occur, and other mental health issues could affect how we feel towards treatment. 

My unit is doing video clinics and I had my first appointment a couple of weeks ago, and it went well. What it also did was break up the day and left me feeling less isolated. They have also started a fistula photograph programme, where we send them a photo of our fistula, so they can monitor it for problems, another really excellent idea to have come out of this. 

If and when things return to normal, I hope they continue to offer both these initiatives, as for one thing, it is better than the 70-mile round trip it usually means for me! 

My name is William and I have been doing home dialysis for eleven years now. I do nocturnal single needle dialysis with a plastic cannula needle and do six sessions every nine days. I have a Fresenius 4008S machine next to my bed. 

We live (luckily in some respects) in a rural area so the risk of catching the virus was low to begin with. The risk has obviously increased over time, as more people came to our area to get out of the house and exercise etc. 

Living in a rural area made it much harder to access food and medical supplies initially. My dialysis supplies have been delivered without problems, however they are left outside for me to bring into the house now, rather than being put inside. They also made an attempt to move to a delivery every eight weeks, however this was ill thought out and they did not have enough stock themselves to achieve this. It led to a lot of confusion and me actually being delivered less than normal instead of more. I suggested we keep the normal four weekly deliveries for my own sanity, as having twice as much stock in our small one bedroom flat was not easy. 

Most pharmacies in big towns offer a free prescription drop-off service. Our local pharmacy stopped doing this some years ago due to the cost, so it was an issue to get medication delivered initially. Having to take the risk and brave queues and a lack of social distancing awareness in the early stages to get tablets was terrifying. Luckily I found an amazing volunteer group on Facebook that were able to collect and drop off at our gate. 

The other big issue many people faced (and are still facing) is getting food. Most of the food and other item shortages are no longer a problem, however I had trouble getting on the supermarket priority list, so getting home delivery slots was haphazard and involved staying up after midnight to try and get one. 

This is still the case, even with priority slot access, due to our rural supermarket not quite having the capacity to give everyone regular slots. I am getting a delivery once every 10 days or so on average. We won’t starve, but sometimes we run out of ice lollies!