Ten (+1) Things to do on Dialysis

I’ve written about this before, but it’s time for an update.

I dialyse five times per week.  After 17 years off and on, I still feel the inconvenience of dropping what I’m doing to drive to BigD.  But it’s not the maddening inconvenience it used to be.  Now it’s more like when you’re absorbed in something and are called for lunch: it’s difficult to let go, but the prospect of lunch has a pleasure of its own.  So with dialysis: I am usually a little weary by mid-afternoon, and there is pleasure in the prospect of sitting in a lay back chair for a few hours to catch my breath and get lost in a selection of enjoyable activities.

Like what?  Here is my list far, in the order of most to least common:

  1. Socialise.  Always the first thing to do.  It can vary from a quick hello as I walk to the scales, to an hour-long discussion about each other’s state of health (always a moving target), books we are reading or want to, ditto movies, the latest dopey effort from our government or opposition, how well or badly we fared at maintaining our weight, how we would run the world and fix its problems, family stuff and any other item that takes our fancy.  The depth and enthusiasm I have depends on the kind of day I’ve had (and the weather).
  2. Catch up on emails.  When they are building up, I check and respond to my emails while on the machine.  Even if you only have one hand free, it’s a good way to keep up-to-date and to while away a little of that machine time.  However, to stay coherent, I limit my email time to about half an hour early in the run.  Note: If, like me, every now and then you decide to have an email frenzy and reply to as much email as you can, for as long as you can, I recommend that you disable the auto send function, so you can do a sanity check on what you have written.  It may avoid embarrassment.
  3. Write stuff.  BigD seems like the ideal time to put some thoughts in writing.  Sometimes it is, though I tend to be less productive as the run progresses.  I recently downloaded the Dragon Dictate App for the iPhone, and I am experimenting with it as an alternative to typing.  So far, I have found that I tend to rework many of my sentences several times.  This is not so easy with voice control.  Also, machine alarms and high ambient noise can be a problem for the software.  There is one single room at our unit, and I will give it another try when I next go there.  I will let you know how it does.
  4. Ride an exercise bike.  This is a great way to start getting fit.  Many people new to the BigD are quite sick when they first start and they can’t imagine feeling well enough to exercise.  It takes a few weeks for the benefits of dialysis to kick in, but eventually a small thought comes through: “How much better would I feel if I had some exercise?”   Riding an exercise bike while on dialysis is the ideal starting point.  After my last bout of infection, I started slowly, with half an hour on the exercise bike, and within a month I was well enough to start back at the gym.  If you feel ready for a bit more pep in your day, give it a go.  Details about where to get one and usage suggestions are on the above link.
  5. Read is a low impact, fun activity.  I tend to do this during the first hour of my run, when my brain is still reasonably functional.  Currently I read a couple of monthly magazines that take me most of the month to get through: The Monthly (covering Australian politics, society and culture) and Scientific American.  And I save up various newsletters and read them when the mood takes me.  Also, I always have a book on the go (usually a naval historical – I love Patrick O’Brien, and Alexander Kent is pretty good too).  Recent others worth a mention: The Istanbul Puzzle (a thriller) by Laurence O’Bryan, An Iron Rose (crime) by Peter Temple, anything by CJ Sansom (Tudor thrillers) and the Game of Thrones books.
  6. Watch a TV series or a movie.  When I just want to chill out, I like to watch.  Last time I wrote about this I mentioned Battlestar Gallactica and Rome.  Both still in my top ten series, but recently Game of Thrones nudged them down the list.  Other shows on my Watch If I Can list are Scandinavian thrillers – Unit 1, The Killing, Wallander; BBC shows – New Tricks, Waking the Dead, QI; and the US comedy Archer (shades of Arrested Development).  I’ll add more as I think of them.
  7. Listen to radio, audio book or podcasts.  I know several people who do this during the BigD.  I listen too, but rarely at dialysis.  I prefer listening to them in the car.  It’s the ideal hands free activity, especially since it takes me between 20 and 40 minutes to get to the BigD and I go 5 times per week: lots of listening time there.  Currently I enjoy: DownloadThisShow (ABC – technology), The History Chicks (history with personality), Big Ideas and Future Tense (ABC – in-depth society and culture), the Economist: Editors Highlights, and The New Yorker monthly short story.  With podcasts, the secret is not too many subscriptions at once; you can always review the list if they get a bit tired.
  8. Enjoy your iPad.  I have finally joined the ranks of the iPadders.  Until recently, I took my laptop, a book, magazines and bits and pieces to BigD sessions, to do most of the things listed above.  Now, I take one device (and maybe some newsletters – some clubs are still in the ark).  I have ebooks, e-magazines and various movie/TV show catch-up apps that keep me so entertained that I’m often surprised when it’s time to go.  The iPad is pretty cheap at the moment.  I looked at many of the other tablets and eBook readers, but the iPad was the best for me.  It is versatile, with many apps available, it’s a good size for reading magazines and books, email and movies.  Definitely a great choice for BigD.
  9. Play games.  Some of the people in our unit have loved ones sit with them the whole run.   They chat briefly with each other, read, watch TV or doze.  Some play games together: cards, draughts, chess or some other to pass the time.  With the iPad’s electronic games, everyone can play some kind of game, either alone or with other patients via the unit’s Wi-Fi link.  The ones I like most are the brain exercise games.  At least I like them for a while, early in the run when my brain can handle them.  Check out Keeping Your Brain Sharp on Dialysis Part 3 for details.  Another option is games that can be played with others online or via Wi-Fi, such as Chess, Scrabble, other word games, poker and a range of galactic shoot ‘em ups and strategic games for two or more.  Find a BigD friend with and iPad and let the battle begin.
  10. Have a massage.  I have massages irregularly.  I mostly go for deep tissue massages, though recently Julie has dragged me along for a Thai massage, which was quite invigorating (a BigD friend had his first a massage and the masseur was a little frightened by his fistula; he couldn’t think of a short way of telling her what it was, so he just said: “Car accident” – J).  Now and then I have also been to one of those Chines massage pop-up shops in shopping centres, to deal with a sore shoulder or neck.  So while I am no stranger to massages, I was surprised to have a foot and hand massage offered to me while I was on the machine.  It came about because Catherine, one of the staff in our unit who has an interest in alternative medicine set up and trained a group of volunteers to give hand and foot massages.  So far I have had two foot massages in three weeks.  They take about 30 minutes and are designed to relieve fatigue, tone up muscles, promote circulation and help relax the feet.  They are very popular, and like the masseurs, delightful.  It also promotes much speculation and banter.

Finally there’s the tried and true universal BigD activity:

Doze.  When all else palls, lay back and relax.  Shut your eyes and see where it takes you.  I find that when I’m tired, especially on early morning BigD (0645 start), I can fade away in a few minutes.  I’m not really asleep, just dozing.  At first I can hear everything going on around me, then not.  If I am woken, I often find 45 minutes has passed by without my participation.  In the afternoons I can’t doze for more than 30 minutes before I become twitchy.  But that’s enough.  Then I select from items 1 to 10.

What other things do you do on the BigD?

Things to do or try on Dialysis

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?

Things to do while you’re on Dialysis or otherwise indisposed

Who do you know who wouldn’t like to have 12 – 15 hours per week quiet time, sitting relaxed, doing what they like, guaranteed? Nobody I know.  This is of course another members-only benefit of BigD club membership.

Yes, there can be a down side: you have to sit quietly, sometimes with an occasional pain in the arm, sometimes you don’t feel up to much. But most of the time, especially if you are keeping your brain sharp, you will be in a reasonable state of health and mental alertness, capable of most anything anyone else can do sitting down. (more…)

Fistulas and fatal haemorrhages: what to do

1-Snapshot_3In February 2010, I wrote Dialysis: death via a damaged fistula, which was about Maya’s father, who died when his sore and swollen fistula burst in bed and he bled to death.  At the time I asked some of the experts I knew about this and all said it happens, but was very rare.

However, over the following 18 months I had a steady flow of posts about other people who had died or came close to death from a leaking or haemorrhaging fistula, and it started to look a lot less rare. (more…)

Coming Soon: the new Number 1 thing to do on Dialysis

TIME_MACHINE_Minority_Media_04.0

Virtual undersea world

Before I begin, welcome to the holiday season! I wish you all a Merry, Happy or otherwise Delightful CABAH (Celebration-Accompanied-By-A-Holiday), and a restful break.

Like many BigD-ers, I love reading.  I love being taken away to exotic worlds with almost real technology, or interesting times in history, or tricky or stirring adventures or Very Big Picture books (the ones with almost no pictures) that help me understand how the world or civilisation or the universe works).  (more…)

Every donor kidney a perfect match: no more transplant drugs!

Stem CellsWe all hate rejection.  It hurts us somewhere deep inside.  And those of us who’ve had an organ transplant hate it most of all.  Because the only way to make all that pain go away is by taking a hearty (sometimes heroic) dose of anti-rejection drugs.

Rejection is driven by our body’s immune system, a collection of cells (T cells) that recognise and destroy foreign cells: germs, poisons, other bits that find their way into us. All cells have proteins called antigens on their surface.  As soon as these antigens enter our body, the immune system recognises that they are not from our body and attacks them.

When we receive an organ transplant, our immune system (more…)

Starting Dialysis: More things You Wanted to Know But Were Afraid to Ask

1-Briefing sheet 1 picIn my last post I wrote about preparing some training materials for BigD-ers everywhere to learn a bit more about dialysis and how to get the most from it. I started writing the first module this week, and realised that I’d missed an important topic: answers to those questions that flood in when you first find out that you need dialysis. So that’s the Briefing module I am putting up today.  It’s called Starting Dialysis – Everything You Want to Know But Were Afraid to Ask. (more…)

Dialysis blow outs: what, how, why and what to do

Belinda emailed me last week asking about her blown fistula. It thought the response could be valuable information to anyone who has just started the BigD.

Belinda:

I just started Dialysis one week ago, this being my second week. Today something went wrong and blood was everywhere and my arm was so swollen they had to cut me out of my sweater. The nurse tech said maybe I had a clot my arm is black and blue and hurts, hopefully, it will heal before I go back Monday. My question is how do you know if it’s your arm or if it was the fault of the tech? (more…)

What does a Healthy Dialysis Fistula Look Like?

Mattie P saw the pic of my fistula and asked: Is your fistula considered healthy?

It is. However, you often can’t tell by looking. There are several ways to tell:

  • It has a strong ‘thrill” (a whooshing noise and a buzz in time with your heart beat, where the vein is joined to the artery). This indicates lots of blood flow, which is what is needed if the arterial needle is to get enough blood to push through the machine.
  • If you keep your arm straight and raise your hand above your head, the blood should drain from your fistula, and leave it looking like a deflated balloon (see video below). This is also good, because it shows that your fistula is not clotted or blocked and that the blood is coming from and going to the rest of your body.

(more…)

How much fluid do you take off during Dialysis?

This is simple question that carries a truckload of baggage.

The question is really: How much fluid do you need to take off during dialysis? I try to arrange things so that I don’t need to take off more than about 2.5 – 2.6 litres in 3 hours (or about 0.8 Litres an hour). That’s about the limit my body can take without acting up later (making me feel weak or nauseous while my body redistributes the fluid evenly). (more…)