I have written briefly about this before: what to do during the long hours on the BigD. This post will look at it in more detail.
I have experimented with a range of BigD activities over the years. I discovered early that there are zones of competence during each run. Typically for the first hour I’m pretty switched on. I have arrived, put in my needles and settled down to start the session. The second hour, I’m a little less alert as my body reacts to the reduced fluid and the change in blood chemistry. By the third hour I get a little fidgety and find it difficult to concentrate. By the fourth hour (if there is one), I start to get a little tired of dialysis and look for distractions, like a movie or a good TV show.
There are a couple of other factors. What I can do also depends on how well I feel (I’m not so bright during the first run of the week, but I’m hot stuff by day four). Also, I recently had my Flu jab, which made me feel not quite right for about three days.
Finally, what I can do also depends on where I have put the needles. Most of the time I put them into my fistula along my forearm: the arterial (the one that supplies blood to the machine) goes in about 2 cm from the anastomosis (the join between the artery and the vein near my wrist) and the venous (the one that accepts blood back from the machine) about 4 cm from the arterial needle. This arrangement enables me to bend my arm and to move it around, for example, to pick out letters on a keyboard or eat my breakfast with my right hand (my fistula arm).
However, about two months ago, my fistula has a blockage, so I had to put the venous needle further up my arm, into the vein right on the bicep. This is less comfortable, but the greater distance from the arterial enabled me to bypass the blockage. The hassle with this arrangement is that it restricts arm movement (bending it too far may poke the needle through the vein and pump blood at high pressure into the bicep). All of a sudden my right arm was out of action and I was one-handed. I got used to it, but doing things involving both hands was out.
My fistula is fixed now, so I have the movement of both hands again.
So, what do I do during these periods?
I’ve tried a lot of different things, some completely out of the box. A couple come to mind. I thought it would be good to try to do some of the personal maintenance things that take up time elsewhere. For example, why not try to arrange a haircut? While Anna, the Unit manager was very open to new ideas, haircuts got the veto: too much loose hair.
Ok, how about a pedicure or a manicure? I got a tentative OK, so I went through the yellow pages to find a podiatrist who did home visits. After about a week, I found one and set up a time two hours into my BigD run the following week. He arrived on time, black bag, white pharmacy-type coat. The only trouble was, he was about 70 years old and had the shakes. He did mostly pensioner’s feet, he told me. My young healthy feet (all is relative) seemed a bit of a challenge. He spread out his implements (they looked a lot like those used in the inquisition) and looked me in the eye. I pulled off my socks and bared my naked feet. Then he picked up a pair of very sharp, heavy-duty toenail cutters and moved towards me.
I don’t know who was more scared. Both his hands shook as he circled my big toe. I began to shake in unison with him. I could see myself hobbling home with a great chunk out of my lovely toe. I was transfixed. Should I call it off? Could I call it off? Was upsetting him a lesser evil than jagged toenails cut to the quick? All the other BigD patients stared. There was complete silence. Finally, to my absolute relief, he said, without looking at me “I think I’ll go now.” I said “Maybe that’s a good idea.” So he rolled up his instruments, stuffed them into his bag and walked out without another word.
I still think it was a brilliant idea, just poorly executed. However, I haven’t tried it again. There are other diversions.
These are my current ones.
During the first hour I pedal our little exercise bike to warm up and expand my blood vessels, so that the machine takes off as much phosphate as possible. This is most effective in the first hour, so I pedal for between half and one hour, depending on what else I have to do.
While I’m pedalling, I sometimes work through my self-paced Mandarin course on my laptop and sometimes, if I can’t be bothered, I read.
During the second hour, I log on to TED, Fora, or one of the university lecture channels (MIT, Oxford) and see what’s happening. Some are just wonderful and take you to new heights. The recent TED lecture by Nathan Myhrvold on zapping Malaria-carrying mosquitoes with a laser is a great example. Some shows are better than others, and if I get onto a dud, I tend to move to hour-#three activities early.
During the third hour, I like to watch either movies or episodes from TV series. It took me about three months to watch the whole Battlestar Gallactica series (I hired it a disc a week from my video shop). Rome, series 1 and 2 was quite diverting. Several TV stations are now streaming episodes of current shows on the internet. Australia’s iView from the ABC seems to be the pick of these. Unfortunately, Hulu and most US and UK video streams are only available to locals. That may change..
I rarely dialyse for four hours, but if I do, I stick to the movies.
I am sure there are many other things we can do on the BigD. Things to amuse us, stimulate us, put us to sleep.
What do you do?