What do you do if you damage your dialysis arm?

Not a question I have thought about in-depth. At least not until I tripped on a hole in the pavement and fell like a sack of potatoes. Sadly I have no judo or ninja-style automatics, where I could roll forward without thinking in a single movement and end up back on my feet (which is strange really, I did nothing else as a kid at school).

Anyway, in addition the immediate embarrassment of offers from help from little old ladies, and studied indifference from all in viewing area, I have also broken my wrist. My dialysis arm wrist. I refused to believe that I could firstly fall over and secondly break something, so in denial I drove back to work. I then felt rather dizzy, sore and sorry and drove home, where I stayed until I was due at the BigD.

I drove there and had a rather painful session, needling around a large new and very tender bump on my wrist. After the session, Julie (my ever patient wife) and I went to the Austin Hospital for some expert help. A couple of hours and an X-ray later, I had what is called a slab, which is a half plaster on the top half of my wrist and arm, held in place with a crepe bandage. It must be removable for each BigD session, so I have access to my fistula.

Yesterday I went to the orthopaedics clinic to replace the slab with a fibreglass clam (two strips of fibreglass joined at the hand). The function is the same. I unwind the crepe bandage and remove the clam, wash and debug my arm, insert the needles (button holes), tape them in place, then replace and bind the clam for the session. Like this.

Dialysing with a broken wrist

I need to keep the broken bone immobilized for about 4 weeks for it to heal.

By the end of the month, I will be an expert on dialysing via a broken arm. Not that I want to be…

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).

That 2.5 litres consists of about 1.3 – 1.4 litres that my body has built up since my last run, plus an allowance for food and drink I have through the run (around 1 litre), plus about 200mls to flush my blood out of the lines and into me.

The key variable here is the amount of fluid I put on between runs: 1.3 – 1.4 litres. That doesn’t mean that I can only drink that much. The body naturally evaporates up to a litre a day through perspiration and aspiration. And I like to kick things along a little too, by going to the gym or on a run. I easily sweat off half a litre this way.

But there are traps.

The first is salt. Salt is the dialysis devil. It absorbs body water into the blood and makes you hellish thirsty. So you drink more – more than you body needs or can get rid of. I am sure you know the symptoms: swollen ankles and extremities; shortness of breath (because your lungs have fluid in them and can’t breathe properly); increased blood pressure; stress because you know you shouldn’t drink; difficulty sleeping.

The second is alcohol. Not only because it has nowhere to go and so just sits in your blood and tissue, but because it is insidious. A little sip, then another. Your head is light and easy, and you forget how much you’ve had.

The third for me is Chinese food. Not only is it often salty (not to mention the occasional MSG), but I like to sip Chinese tea with it. And again, I get carried away. Before I know it I had the day’s supply of water in a single meal.

Too much fluid matters in a couple of ways, one short-term, the other long term.

In the short term, you have to get it off during dialysis. Taking off a lot of fluid (believe it or not, I know some people that arrive for dialysis carrying six to eight kilos of excess fluid!) can be hard and uncomfortable: fluctuating blood pressure, dizziness, jiggly legs, difficulty staying in one position, nausea, and so on). And it’s just as hard and uncomfortable for at least the rest of the day.

In the long term (which can be distressingly short), having more fluid on board than is natural puts pressure on your heart. Lots of pressure. It is a documented fact that us BigD club members rarely die from kidney-related problems. Mostly, predominantly, it’s heart failure.

So watching our salt, getting regular exercise and staying within our ideal fluid zone give us more than simply a good run. It’s step one to a healthy heart and a long (or at least longer) life.

What to expect when you start Dialysis

I’ve had several posts and emails this week from people new to the BigD, wondering what to expect and how to deal with it when the time comes to join the BigD Club as an active member.

Starting on dialysis is always traumatic.

Firstly because you are not well. As your kidneys gradually fail, you feel progressively lousier, weaker and more miserable. You are in a fog and often don’t realise how unwell you are. Decisions don’t come easy.

Secondly, because you dread dialysis more than you should. From the moment your doctor mentioned it, you have fought it. Over the months or years since then it has become a big bad deal in your mind: needles, pain, failure, precious time taken from you.

So, what’s the reality?

You’ll feel better and brighter. Often after the first run. This is not surprising, since the artificial kidney has removed the bulk of the toxins and waste products that were making you feel like crap. What is surprising, is just how much better. You can think. You may even feel a little jolly; your body is just so relieved.

It actually doesn’t hurt that much, it just looks like it should. The needles are big and they do go into your arm, but since most units use local anaesthetic and the nurses are usually gun needlers; they don’t hurt. It only takes a few seconds. To begin with, just look away.

As far as time goes, well, if you dialyse three times a week, four hours a time, plus around 40 minutes each side (about 30 minutes to get there, 10 minutes to get hooked up, 10 minutes to disconnect and 30 minutes to get home), that’s as close as damn it to 18 hours a week. My doctor used to say it’s the equivalent of a part-time job (one where you can’t call in sick!).

But I don’t think that’s the way to look at it. He’s right in that it’s a firm commitment, but when you go to a job, your time is not your own. When you go to the BigD Club, it’s all about you. At first, you may feel like just sitting and sleeping, but after a few months, your body will bounce back and look for more interesting activities.

It’s an fascinating thing: Many studies have found that people rarely change from who they are. If an obnoxious, sleazy shyster wins the lottery, he may become generous for a while, but eventually he reverts to his obnoxious, sleazy, shysterous-but-rich self. And if a happy-go-lucky person loses both legs, she may be miserable for a while, but she eventually becomes a happy-go-lucky person with no legs.

Rest assured it’s the same with dialysis. It will take you a few months to get used to it, but you will. And as you do, and you’ll find a way make it part of you.

In short, expect to be pleasantly surprised: the pain is minimal and you’ll feel pretty darn good; and deal with it the way you deal with all the other obstacles in your life, one day at a time.

Finally, remember that it is a Club. Every member has been through exactly what you are going through and we are usually very happy to help, advise and listen.

Riding an Exercise Bike on Dialysis

About 12 years ago, Anna Catteral, the then Manager of my dialysis unit asked me how I would feel about riding an exercise bike while on the BigD. She had read somewhere that it may have benefits of various kinds and was considering trialling one. It was early days for me, and I wasn’t yet handing the BigD very well, so I said no, I thought I’d be too tired. In fact, I was a bit aghast. No way would I ride some bike in addition to the run, which I found exhausting enough in itself!

Things and people change. About a year ago my mate Max said that he had used an exercise bike at another unit he visited on holidays and thought it was great. He also said that studies showed riding for the first hour of a BigD session resulted in significantly improved phosphate removal due to increased muscle blood flow. Now that I am fitter and handle the BigD well, I wondered how I could give it a try. I found it difficult to imagine what it would look like, much less use.

Actually, it’s pretty good. Max talked to Chris (our Unit Manager) who found a supplier. And Chris arranged for new chair complete with exercise bike attachment, to be made available to the unit for trial all this week.

Here it is.

Bionic Comfortline Chair with Exerciser

The actual exercise unit is quite small and relatively light (8kg). It snaps on and off (to be replaced by a footrest). Pedalling pressure is adjustable, and there is a small on-board computer to calculate speed, distance, timer, calories, etc.

I set the pressure to low-medium resistance and began pedalling.

Using the Exerciser

It’s not quite comfortable in socks, best to have some gym shoes or slippers, but otherwise it’s actually quite enjoyable.

You get into a constant rhythm and just keep going. I got warm, but not hot or sweaty. Normally, just sitting there you can get quite cold and need a blanket, but not while you’re ‘on the road’.

Here’s Max, showing how it’s done.

You can watch TV or a computer video while you pedal, but it’s not practical to try and read (just a little too much movement). I pedalled for around 30 minutes, which gives you a good benefit and still time for other things: reading, a little computing, sandwiches, cup of tea… three hours can go pretty fast.

Because you have to buy the chair to get the exerciser, this unit is pretty pricey (around $7,000-$8000). The chair is made by Bionic in Germany and distributed in Australia by TekMed. While it’s not feasible to expect the unit to buy one for every station, maybe buy one chair that people use on rotation?

There is also a standalone unit around which costs about $200. I am told that you need to sit upright to ride it, which may not be practical for some BigD club members. However, being so much more affordable, we could buy our own (more about that unit soon).

So, in summary, using an exercise bike as part of the Bigd treatment looks like it has legs!