Dialysis: surviving the long break

Some days if really look forward to the BigD.  Usually after a long break (for me, from 0645 Saturday morning until 0645 Monday morning).  By the time Monday morning comes around, I am very ready to get those needles in.

The build up is slow and sometimes subtle.  Immediately after the Saturday BigD I am at my dry weight, and I must limit myself to around 1.5 to 2 kg until Monday.

First thing, I have coffee and cake with Julie, a highlight of the week. That represents about 200ml of fluid.  A while later we have lunch and I have a cup of tea (another 200mls).  Sometime during the afternoon I have another cup of tea (200mls).  Then at dinner time, if I’m at home I have a glass of wine during the meal and sometimes a yogurt for dessert (yogurt, custard, ice cream, jelly – all of these count as fluid – 350mls).

If we dine out, I try to avoid anything salty and stick to one glass of wine (though I can’t resist a sip or two of the water as well), plus desert!.

Either way, the total so far: 950+mls.  Add in the weight of the food have eaten through the day and I have well and truly gained a kilogram.  By the end of day one, I have gone from quite dry to nearly my normal weight.

One day to go.

Sunday Morning: If I have inadvertently had something salty, I wake with a strong thirst, which I try to slake with small sips of water.  If I am feeling well, I go to the gym, not just to keep fit, but to sweat.  During a really good session I can lose up to half a kilo, which gives me a bit of extra leeway for the day.

Once we get home, we have breakfast and I really let my head go – I have two cups of tea (around 500mls).  If we have visitors or meet with friends, I have a coffee and a little water (say 300mls).  Tea with lunch (another 200mls).  Afternoon tea or coffee (200mls).  Finally, dinner with wine and more yogurt (300mls). Total for day 2: 1,200mls – 1.2 kilograms.

But it’s not all one way.  Every day, just by breathing I lose fluid.  On hot days as much as a litre. On cold days, maybe half that.  Either way, I can subtract around 500mls from my fluid total each day.

So by the end of Sunday, day two, I am starting to feel a little overloaded. In addition, my body has broken down the food I ate since Saturday morning and has added the waste products that I would normally pee away (in an ideal world!) into my bloodstream.  So I am starting to feel a little dull.  Also, the additional fluid in my system is putting an extra load in my heart and my blood pressure rises.  Off to bed.

Monday morning I wake around 0545, have a quick shower and head to the BigD.  I feel like I did last night, only more so, so I am looking forward to getting connected to the machine and watching my blood flow through the filter on the way to feeling normal again.

Monday marks the start of my daily dialysis (Monday to Thursday), so I know I can relax a little. With daily dialysis, I rarely get overloaded and the waste products don’t get a chance to build up to uncomfortable levels.

I know that many people regularly go for three days between sessions (as I used to before I changed to daily dialysis), and feel even worse before they finally get to dialyse again.  I know that people get used to it because often they have no choice.

My aim in describing the long break build up is to put into words and to recognise how difficult it can be to stick to the BigD regime every week, week in, week out, for years.  And to show why we sometimes break out, even though we know it’s bad for us.

Of course, we stick to it, mostly.  The alternative is a little too drastic.

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