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B49

Rachel's Story

I began dialysis when I was nineteen – twelve years ago. I had PD dialysis at home for three years, but I was fortunate to then have a transplant from 2005 to 2010. It was November 2010 when I needed to transfer back to dialysis, which I started in York. This was three days a week, with four hour slots. However, the process was always far longer than four hours – a session scheduled to begin at 4pm, could result in my return home at a time as late as 00.45; four hours easily became six, seven or eight hours spent not just at the hospital, but travelling, waiting for other patients to finish and preparing for dialysis.

Additionally, there was no flexibility. York, due to the volume of patients, has to have a rota, and so it would be difficult to change times. For example, my schedule meant that I had dialysis on Friday and the next session would be Monday, meaning there was a large gap. Plus, once when my daughter was too ill for me to go in, it made it more difficult to change times, although fortunately I was able to, but only because it was an emergency. Any other change would have to be made much in advance. SO there was a certain rigidity that meant I was scheduling my life around dialysis. I had already began taking a greater role in my dialysis at York, I would either begin to set up myself, or help the nurses beforehand, which is probably what made the transition to self-care quite easy.

I began self-care on the 13th December. Although not even three months have passed, there have been huge benefits. Firstly, I live in Selby, so I don't need the transport. Hospital transport can take hours because it needs to pick up all patients, but now it only takes me ten minutes to walk here. There is also greater flexibility, I can change the dates and times I choose to come in depending on what I plan to do, or for example if there is a half term holiday. This choice makes it easier, and has allowed me to spend more time with my children. I've really seen a positive change in my children resulting from this, because otherwise they were having to spend three nights away from home, which since they're young (aged five and seven) was difficult for them. Whereas now, I am able to drop them at school and pick them up.

Instead of only doing three days, and having larger gaps in between sessions, I can now do five days, which has significantly improved my health – my blood pressure has dropped. Plus, in Selby, four hours on dialysis is only extended by thirty minutes beforehand and twenty minutes after. There is far less time wasted.

I think there should be greater awareness of dialysis. When I was diagnosed, I had no idea what it was. This is probably why there are some misconceptions that surround it; many people think it's only for those who are older. Or that if it's a problem with your kidneys and you are younger then it must have been self-inflicted; parents at my children's school assumed that because I looked a little yellow at times and had needle marks on my arms I was a drug addict. Greater awareness would combat this.

I have a pretty positive attitude to dialysis. Many people can be quite miserable, I think it's because they see dialysis as something which holds them back, whereas I see it as a necessity – just like brushing your teeth or having a shower. I wasn't always like that, I once missed thirteen days, during which I refused to take medication, and I was incredibly ill after that. This episode really changed my outlook, and I have tried to be chirpy and positive about it since. It helps that I am surrounded by friends and family who don't let me get down about it, but instead make jokes which makes it easier. If I'm out with one of my friends, she'll ask strangers "Will you buy her a drink? She's dying". Joking about it definitely helps. 

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