I considered a single Brussels sprout as an annual treat
Christmas for Deborah Bakewell and her family was always a time of limitation during the most tempting of seasons. Diagnosed with polycystic kidney disease in her mid-20s, Deborah had already seen her mother’s experience of Christmas on dialysis.
“Gravy was certainly off the menu for my mother at Christmas when I was growing up. She was really restricted to just three cups – not mugs – of liquid a day. She managed this by having a cup of tea in the morning and another four tiny cups of tea throughout the day. This meant that come dinner time, she had already reached her allowance of liquid. I don’t think many people think of things like gravy or custard as liquids, but these things become very clear when you start dialysis.”
A strict diet, even at Christmas
Seeing the impact that dialysis had on her family gave Deborah some indication of what she might face in the future. For twenty years, Deborah was able to live with her kidney disease before she entered renal failure in her mid-40s. Like her mother, she was given a strict diet to adhere to, which limited many of her favourite foods.
“I was relatively lucky as, whilst my food was restricted, I did not have to worry about the amount of fluid I was taking in. That didn’t mean that keeping to the diet was simple especially around Christmas as it seemed everything that you could possibly want was suddenly prohibited. Sprouts, chocolate, crisps, bananas and even meat all had to be restricted. Christmas dinner just is not the same when you are on dialysis as my dinner plate was miserable! Consisting of just two roast potatoes –par boiled before roasting – no mash as that would be part of the potato allowance, one sprout which I considered the annual treat and only one or two slices of turkey, it couldn’t be considered the highlight of the year.”
Dialysis doesn't get to stop
For Deborah, Christmas dinner wasn’t the only thing that impacted her festive joy. Dialysis is required regularly with most people needing three sessions a week, usually in a specialist clinic or sometimes at home, for up to four hours a day. While others were enjoying each other’s company, Deborah was having to slip away to have her treatment.
“Some people don’t realise that dialysis really does take over your life. Everything else is scheduled around your treatment and you can’t simply put it off until later. Christmas time was especially difficult as it is a period where family comes together, and everyone is very sociable. I remember vividly taking myself upstairs during Christmas to have my treatment while listening to peels of laughter and joking from the family downstairs. I never resented anyone having fun, but it did seem unfair not being able to be part of the hilarious activities going on.”
Christmas past and present
Luckily for Deborah, her experience on dialysis is part of her Christmas past. After receiving a transplant in 2010, she was able to finally come off dialysis and live life to the full again. She was the first person to have received a donor kidney that had been through a pioneering transplant technique developed through our work, and remains truly grateful to research.
“Christmas time has been rewritten for me since my transplant, I have experienced the festive period as I used to with sprouts and chocolate aplenty – albeit not on the same plate! Clearly, I now have medication to regulate my transplanted kidney and I endeavour to watch the quantity of my food intake. I know that transplant is not a cure and that the dark days may come back again, but I do feel the joy of having to live in comparative normality. I am always grateful for the generosity of my donor and their family; words cannot describe the gift they have given me and the life I have been able to live since my transplant.”
Facing your first Christmas on dialysis can be an incredibly daunting time and people like Deborah know all too well the fear and anxieties that can go through someone’s head. Her advice, make dialysis a habit that you follow every day.
“The thing I used to hang on to was that everything can become a habit so, after a while, I would not get too agitated about these special times, dialysis had to go on.”
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