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.


Peter, 70, has been on dialysis at Diaverum Diamond Valley for about 8 years, and over the last year, learned that he had contracted cancer. This led to a series of treatments, including chemotherapy.  Last month, he noticed a rash on both arms, which he (rightly) attributed to the chemo. His doctor recommended a cream rub, which he diligently applied to each arm, including before dialysis.

The trouble was that the cream made his skin a little slippery, and an hour into the run, the tape holding the arterial needle in place lifted off completely and his arterial blood hosed a couple of metres into the room. He immediately remembered his fistula safety training, pressed down on the needle hole with his finger and raised his arm. He stopped the bleeding, called for help. No panic, no drama.


Lilliana, 62, has been on dialysis for 14 years, eight of those at Diaverum North Melbourne. Over the last month or so, one particular needle hole in her fistula developed a scab that did not seem to be healing. While there was no sign of infection, nursing staff avoided it and chose other sites to puncture when needling. One morning two weeks ago, while Lilliana was at home, the scab came off and the fistula began to bleed profusely.

Again, like Peter, Lilliana remembered her training: she pressed with her finger and raised her arm above her heart to stop the bleeding, and called for help. She knew what to do, and she did it. No panic, no frantic search for a tourniquet or something to staunch the blood flow. Just quick, effective action. The ambulance arrived, she was taken to hospital where the wound was treated.

Over the next few days it showed signs of recovering.



Lilliana’s fistula after the bleeding stopped

However, though the scab appeared to be healing, last week it came off again, while Lilliana was on dialysis. Blood burst out and sprayed everywhere. Once she realised what was happening, she again pressed her finger on it, raised her arm and called for help. The unit’s doctor quickly took over (see pic). Again, she went to hospital, but this time for a complete fistula rework.


It will take a few weeks for the fistula to recover, but it will, and in the interim, she will dialyse using a single needle.

The training works!

I must say, when we heard about how well both Peter and Lilliana responded to their fistula bleeds, everyone associated with the training were thrilled and delighted. Their prompt action diffused what could have been major, possibly life-threatening situations.

At the beginning of this project, our first surveys showed that almost no patient knew that a fistula could rupture or bleed out, and 90 per cent did not know what to do if it did happen.Post-training surveys indicated that over 90 per cent of patients now knew what to do. But seeing them put their training into action so confidently and effectively is concrete evidence that the training works.

Post-training surveys indicated that over 90 per cent of patients now know what to do. But seeing them put their training into action so confidently and effectively is concrete evidence that the training works.

We are making headway! In our own small circle, yes, but headway nonetheless. And having proven the effectiveness of the training, the next step is to release it for patients everywhere.

So watch this space. The training program will be available online over the next month or so, for any unit or anyone to download, print and use.

And, with luck, we will see what we have all been looking for for so long: as the training spreads, fewer and fewer people dying from fistula ruptures and bleed outs.


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. I persisted with dialysis for a while, hoping to get to the end of the run, but that was not to be. The staff called an ambulance, took me off the machine and I called Julie.

Julie arrived first (and I was really pleased to see her), followed by the ambulance. The paramedics were cool and calm and started work immediately. They took a range of measurements (pulse, ECG, temp, bloods, etc), asked me how I felt and I said I had chest pain like an ache in waves. The senior paramedic thought it was heart rate pain – because my heart rate was too rapid, it couldn’t effectively pump blood to the rest of my body, depriving my organs and tissues of oxygen and causing the pain, shortness of breath, etc.

They gave me a GTN (Glyceryl trinitrate) patch (to widen my blood vessels and let more blood and oxygen reach my heart) and some chewable aspirin (to slow blood clotting). Then a small injection of Morphine, to reduce the pain. I felt a lot calmer after this, but my heart was still playing helicopters in my chest.

1-af-amb-3-001Then they packed me up and we went for my first ever ambulance ride. Julie followed in the car.

We went to the closest hospital, The Austin, which is also my ‘Home” hospital, where I have had two transplants, three kidney removals, and many, many stays for infections unknown and known (like pneumonia) and the odd heart disease problem. It is quite disorienting, scooting along in the back of an ambulance. I know the way there quite well, but each time I looked out the window, I really had no idea where I was.

In the past, I have always been admitted via the Emergency Department, often after a lengthy wait. This time, I arrived at the Ambulance entrance with flashing lights; the doors opened and I was wheeled in on a trolley. There was still a wait; it was super-busy so I just laid there and watched the drama, of which there was plenty.

For some reason, this was a night for Ice overdoses and aggressive, crazy people. The ED staff are not only skilled, they are brave. In the glimpses I saw, one patient was clearly out of her mind; fighting, swinging, grabbing, punching, screaming, swearing and staring with blank, hate-filled eyes. She was gradually strapped in place in a bed but continued to thrash and struggle and stare. It was as scarily close to a real-world zombie movie as I ever wish to experience. Asking myself why anyone would do this to themselves was as horrifying as it was pointless.

Every few minutes, I texted my progress to Julie and Mark, our eldest, who were in the ED waiting room, about my progress.

Eventually, I was taken to a cubicle for more tests and heart drugs. By this time, it was about midnight. Julie and Mark were shown in. Mark left around 1:30am. In the past, I have spent the night on a trolley in ED waiting for a bed in the kidney ward. But no one mentioned being admitted this time. Julie was all for waiting around, but I thought I would be hours yet, and eventually convinced her to go home around 2am.

Around 2:30am the heart drugs started to kick in and my heart beat gradually returned to normal. Around 3am, the cardiac specialist came by and said I could go home! I called Julie, who had just fallen asleep. She drove back and picked me up. We arrived home around 3:30am and flopped straight into bed. I slept like nothing had happened

I slept like a log and woke feeling like nothing had happened. Luckily, there were no after-effects, and heart-wise all is well. Julie and I are still recovering from the drama.

Lesson. Later, discussing the whole thing with my doctor, I remembered that sometimes when I try to take off more fluid that I need to, my heart reacts to the reduced fluid volume by going into AF, usually for a few hours. This time, I had tried to take off much more than I needed to.  Stupidly, I persisted and my heart reacted accordingly. What I should have done was to stop dialysis immediately, have a drink, and recalculate my dry weight. What I did was panic and keep dialysing.

Like I said, sometimes  good health simply involved thinking straight and not making dumb decisions.

Quick read: How to slow/stop your fistula bleeding

1-Snapshot_0-001The key to slowing or stopping your fistula from bleeding (whether it’s after a needle has been removed or (God forbid) a rupture) is to understand why it spurts in the first place.

Our fistulas are created by connecting a high-pressure artery, full of oxygenated blood coming at a great rate from our heart, to a vein, which is usually returning de-oxygenated blood at a leisurely rate (about 80 mL/min) from our body back to our heart (more…)

Speaking of dialysis…

1-IMG_1532As I hoped, here is the video of my speech to the Diaverum Annual Conference at Cascais, Portugal, last month.  It was called: The View from the Chair, a Patient’s Perspective.

It covers a bit of ground, but the highlights (apart from the joke at the start!) are: (more…)

Off to the Diaverum Global Dialysis Conference

I’ve been missing in action for the last few weeks, for a couple of reasons.

Josie & Liam Firstly, our No.2 Son just married his lovely fiancé here in sunny Melbourne (on the beach at Elwood).  It was a great wedding, but they live in London, so Julie and I have been pretty busy preparing. Not much time for blogging.


e-Patients: being our own guardian angel

1-IMG_1532I am now in week 5 of the eHealth MOOC I wrote about in my last post.

It has been a revelation.

The most eye-opening subject was covered in week 3: eHealth for patients and citizens: all about e-patients.

Before we go further, meet e-patient Dave deBronkhart.  His story cuts to the chase: it saves me writing and it saves you reading.  It only runs for 16 minutes, and its great! (more…)

Stopping dialysis: Really?

1-Nike® Try to Stop Me-001Doris recently wrote:

My husband has been on dialysis for 3 yrs this May. Before kidney failure he had diabetes and heart disease. To look at him, you wouldn’t think he was sick at all. But this year in December, he is planning to stop dialysis.

The thing is, I don’t blame him. With all these diseases he has been through hell.
He doesn’t really think he’s going to die, and that would be so awesome.
So he’s trying to see if there is a way to control his potassium. Any suggestions?

Hi Doris. (more…)

What’s it like to be on dialysis?

What is it like to be on dialysis?

In my last post I asked for your help in preparing a video for people who have just been told they need dialysis.  It’s a scary time and the first thing most people look for is information they can trust. Who better to provide that information that the BigD community?

I was asked for the video by MaryAnn & Rajiv in Bangalore, India.  They are putting together a range of videos covering dialysis and transplantation.  The video I have prepared has a short introduction then a series of 1 – 2-minute interviews where we asked a broad cross-section of people on dialysis four questions: (more…)

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


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…)

Finally, the HB mystery unmasked!

shoulderAs regular readers will know, over the last few months, I became quite unwell well, with fevers, lethargy, persistently low haemoglobin level (HB) and generally feeling crappy.  Also, gradually (so gradually I didn’t realise it was happening), my muscles and joints began to stiffen and lock up.  I was walking around like a wizened old man: bent over, no flexibility, only just able to touch my toes.

I eventually spent a couple of weeks in two different hospitals.  But it seemed that no-one could find the problem, until one young and enthusiastic doctor
thought he recognised it, because it was his specialty.  He sent me for a full body MRI and which confirmed his hunch.  I had something I could barely pronounce: Polymyalgia Rheumatica (PMR). (more…)