Training really can stop people from dying from fistula bleeds

You may recall that in April last year, Julie Tondello (from Diaverum in Greensborough) and I developed a Fistula Safety training course and poster for dialysis patients. The main aim of this 10-minute course was to keep people safe from fistula ruptures and bleeds, both by knowing what to look out for to prevent it from happening and by Pressing and Lifting to stop the bleeding if it happened.

Julie ran the training as a one-on-one session for all patients at Greensborough and North Melbourne dialysis units. Surveys before and after indicated that it was universally well-received and effective.

But as always, the proof of the pudding is in the eating. (more…)

Road trip to Adelaide!

Julie has been commuting to her work in Adelaide a few days a week for more than a year now. So, for a change of pace, we decided to start our New Year by driving there together for a working holiday – she would work while I’d be on holiday!

There’s nothing as romantic as a road trip, where we could check out the delights of remote Victorian and South Australian country along the way. When you fly, you leave home, sit in a tube for an hour or so and you are there. On a road trip, the holiday starts as you pull out of your driveway. (more…)

Living well on dialysis? Absolutely!

BigDandMe is all about living well on dialysis.

Hard to imagine when we first hear the bad news: I’m going on dialysis. Then, our life seems to be consumed by shock, anger and not a little fear. But for most of us, that doesn’t last, because after a few weeks, we start to feel well again, and our resilient side comes to the fore. Our life is not over, just different. And dialysis is the price of the ride.

It is always great to hear of other BigD-ers with this living-life-to-the-full attitude.

 

wayne-cooper-dela

Wayne Cooper LSBM at DELA

Like Wayne Cooper, a board member of that wonderful South Australian institution, the Dialysis Escape Line Australia*. DELA’s main goal in life is to set up temporary dialysis units at resorts and on cruise ships to allow patients a holiday, without the stress and difficulties commonly experienced when organising treatment away from home. (more…)

Life 2.0 – a chance to fix the faulty bits?

dna-crane

Rebuilding DNA with CRISPR. Source: New Yorker, Illustration by Todd St.John

BIG things are happening in genetics, for BigD-ers and for the rest of the world. Scientists have discovered a naturally-occurring, highly accurate gene editor, that can be used to cut and paste or delete genes or parts of genes in DNA. They can use the editor to remove a disease-causing mutation, replace faulty or undesirable parts of a gene or to turn a gene off completely.

What could this mean? Say you’ve inherited a genetic mutation that guarantees you’ll get polycystic kidney disease by the time you reach adulthood. And that it is most likely you will spend the rest of your life on dialysis.

What if the mutant genes that cause polycystic disease, passed down from generation to generation, can be clipped out of your genome entirely and you never pass it on to any of your offspring? (more…)

Yet another !*?*?*! adventure?

This time the adventure began when I went to the toilet. When I looked at the result I saw a black mass surrounded by red wine that I don’t remember drinking. My heart fell: not good.  I thought, will I tell Julie and have to go back to that damned ED? Or will I just stay quiet and hope it is a one-off?

I flushed and began to walk away when I needed to go again.

Same result, with more red wine. Actually, all red wine.  Er Julie, have a look at this. She looked at me with just a touch of anxiety, looked into the bowl and said: Pack your hospital stuff, we’re going to Emergency, no arguments.

Blood transfusion Number 1

Blood transfusion Number 1

I hate it when I’m, right. (more…)

Another September medical adventure on dialysis

With my heartbeat restored to normal rhythm by those wonderful people at the Austin Emergency Department, life was sweet again.

Then on the evening of my third day back on BigD, about an hour into the run: crippling stomach pains. What the hell is this? Over the last few weeks, I’d had a niggling stomach ache, which I had attributed to a series of hotter than usual curries from my lunch shop. As you do.

red-curry-riceI’ve been losing weight lately, so I’ve taken to having a hot meal at lunchtime to try and beef up a little. I go to the same place most days, called ThreeAteThreee (‘cos it’s at 383 Camberwell Road, of course). It’s owned by a Chinese couple called Rick and Too-Shy-to-Say. Rick is a great cook. He makes a main meal every day: one day chicken, the next day beef. Usually, it is a curry (more…)

A September medical adventure on dialysis

For the last couple of years, I’ve been unusually healthy: no major dramas or hospital admissions; not many infections, colds or the like. And I was pretty healthy for our Lisbon trip.

This kind of peace and quiet can lull you into a false sense of security, where you start to think that health might just be the norm. But sadly, all of us BigD-ers need some pretty fancy footwork and a good dose of luck to stay healthy.  Or at the very least, we need to keep thinking and not make dumb decisions.

I stopped thinking and fell into my unexpected medical adventure on the 13th, around an hour into my dialysis run. I went into AF (irregular heartbeat) and my pulse got faster and faster. I was short of breath and had waves of chest pain; I thought my chest was going to explode. (more…)

International Travel Tips on BigD – an update

1-img_3565International travel is fabulous:  new worlds, new food, new language, new experiences, adventures and delights.

Of course, international travel can also be a little daunting. Once you step outside your door, your supports: your language, your local knowledge, your contacts, your comfort zone, disappear.  You are in the hands of others for the simplest of activities, from getting around, to eating, drinking, sleeping, going to the bathroom, and especially dialysis, because we all need our regular BigD fix, no matter what.

So preparation, planning and once you arrive, vigilance are the orders of the day(s). (more…)

Dialysis​? Choose your topic!

The one downside of a blog is that each time you write a new post, the previous one is shuffled down the page. So as time goes by, all the older posts get lost downstream in one long river of posts. If you want to read about a certain topic, you have to either scan the posts one at a time or use the search function. Either way, it’s not easy to get an overview of everything that’s available.

So, after six years and 213 posts on a large range of dialysis topics, it’s time to raise the bar and make it easier to find subjects and posts that cover various themes. For the last few weeks, I’ve been re-reading and classifying them into a map or framework of topics (or in blog-speak: Categories).

Here is the resulting Map of Topics:

dialysis-topics2

It is quite a list, but hopefully, it is also a useful way to find a topic you are looking for.

Getting there

Is simplicity itself!  The Categories list is on the right-hand side of this screen, second item from the top.  Just click on the down arrow where is says Select Category and the list will be displayed.  The number after the name is the number of posts about the topic.

Also, I am gradually changing the way the posts display, by inserting a break after the first few lines, with a (…more…) link.  This is designed to make it easier to see all posts and get the gist of the topic.

Regarding the Travel topics, there are at least 12 countries listed so far,  but most travel posts actually deal with specific cities rather than countries, so you will need to scan the posts to find the one you need. (There are several better options for managing posts and reviews about travelling on dialysis. I will cover them and my proposed solution soon.)

I hope this is useful!

Flash: Dialysis staff go home and leave patient locked in

This would funny if it wasn’t so serious. Was this just a bad day or is there something fundamentally wrong with the culture of the organisation that runs the unit?

I hope that, like me, most dialysis patients just can’t imagine being locked in their unit after everyone else has followed Elvis from the building.  Hello?  Hello?  Is anybody there?  Anybody?? (more…)