Preventing Fistula Ruptures: training course for patients

DV Poster 99DesI have just returned from the Renal Society of Australia’s annual conference, held on June 20 t0 22 this year at the Gold Coast, Queensland.  The conference is for renal professionals, nurses, clinicians, doctors and consultants. I went along because I was a co-author on one of the presentations.

The other author and presenter was Julie Tondello, a renal Associate Nurse Unit Manager at my Diaverum dialysis clinic in Diamond Valley, Victoria. The paper was called “Can your fistula rupture?” and was triggered by the ongoing posts, comments and queries about fistula rupture deaths on this blog. (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…)

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…)

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…)

More on fistulas and fatal haemorrhages

Infected 1This post is about fistulas, the dialyser’s lifeline.  It’s about how and why they can haemorrhage, signs and symptoms that indicate a potential problem and action to take to prevent it.

We BigD-ers need a fistula to make it easy to insert dialysis needles.  The needles are reasonably large, and cannot be inserted into normal veins.  If you don’t have a fistula and you need to go on dialysis, you usually get a Perm Cath (permanent catheter) or central line that is connected directly to one of several large veins in your neck.  If you can’t grow a fistula on one or both arms because the vein has too much scar tissue, (more…)

Dialysis: death via a damaged fistula

Yesterday, I received this comment on my post on fistula blow-outs from Maya in New Zealand, which quite shocked me:

hi my names maya from new zealand. my dad passed away 1 years ago aged 44. he had been on dialysis for about two years. he had been complaining about his sore and swollen fistula for months but nothing was done. my mum woke up next to him to discover him dead, he had put pressure on it and it burst as he did not feel it he bleed to death. his autopsy showed all his body organs were 100% healthy apart from his kidneys. we are angered by his treatment, resulting in his death. nothing has been done even though a full investigation was meant to take place. could you please give me some advice on what i can do, how i can bring this to the attention of others that might do something, and is this very common? i would appreciate any feed back. thank you…maya cassidy

Here is my response (with additions on 22 Feb). (more…)