The patient and carer trained, what about the doctor?

Here we are, just a couple of weeks after posting the Fistula Health training program, and Daquon writes this:

Hi Greg. My mom is 42 she been on dialysis for 5 years. Recently her fistula had been getting big and the Dr. at dialysis told her she should be careful because it was thin and she could bleed to death. From me reading your responses on everyone else, they are supposed to fix her fistula when they noticed it was swelling up.

But lo and behold they didn’t, and a week later she woke up and blood was squirting out her arm. I call ambulance, they took her to the hospital. She got surgery done on her arm but she came home yesterday and she told me she had to change the bandage twice a day and when I help her take the bandage off it was a big hole in her arm leaking blood to the white meat. We had to stuff the hole with bandages and wrap it back up.

When I send this, tears come to my eyes. I just want some information on what’s going on and is she going to be alright. the only thing she told me is that it was infected.

Wow. Daquon’s mother was a classic candidate for a fistula rupture: swollen, thin walled and infected, and what happens? The doctor both recognises and acknowledges the life-threatening problem, then he tells her to be careful and walks away.

This the very person, the saviour, the white knight expected to act, to fix the problem!

Of course the fistula ruptures. Luckily Daquon is there to help. He acted quickly to stop the bleeding and called an ambulance. The patient/carer training worked just fine.

When we go to dialysis,  we assume that each party in the circle of dialysis care will actually do their job. I think that mostly this is a fair assumption. Mostly.

But the best way to be sure of that is to make a very public fuss – even a legal fuss – when they don’t. Sometimes the only motivation to improve care is financial. So I have sent Daquon the details of a lawyer who is working on a US fistula rupture negligence case right now.

At the very least he should see the dialysis unit manager and make a formal complaint about the doctor’s lack of action. He should also ask to see his mother’s care record to see what has been documented and what care has been recommended. In many cases, this material is hard to get because the dialysis unit owners don’t want to admit liability. -“It was nobody’s fault- it happens” just doesn’t cut it. The blame for this kind of inaction can and should be laid at the door of the dialysis unit and poor training of staff.

In many cases, this material is hard to get because the dialysis unit owners don’t want to admit liability. -“It was nobody’s fault- it happens” just doesn’t cut it. The blame for this kind of inaction can and should be laid at the door of the dialysis unit and poor training of staff.

It is hard to say what was done at Emergency, but his mother clearly needs to see a vascular surgeon to have her fistula fixed properly. So Daquon should also ask for an immediate referral. Hopefully the surgeon will do more than just tell her to be careful.

Fistula Rupture Health Education Package Now Available

This week the Fistula Health Education for Patients package, developed by Julie Tondello at Diaverum and me is now available for anyone on dialysis.

The Package has been prepared for use on a one-on-one basis by dialysis unit nursing staff, educating patients.

Dialysis Unit staff

  1. Print out the two-page education sheet and keep it handy for reference during each education session
  2. Print two color copies of the poster:
    1. One on an A3 or similar sized page
    2. One on an A4 or letter sized page.
  3. Laminate both posters
  4. Attach the large poster to the unit noticeboard so that all patients can see it

Schedule brief (5-10 minute) education session with all patients. Use the Education sheet and the A4/Letter sized poster during each session.

Individual patients

This material can also be used in a self-learning mode directly by patients. Just print out the two-page education sheet and the poster. Then put aside some time to read the sheet and work through the poster.

This education has been provided for use globally via the Diaverum network and the BigDandMe blog for unrestricted download and use under a creative commons (no fee) licence.

Fistula Health Education for Patients package

Fistula Health Education Poster for Patients

 

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

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

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.

 

1-north-melb-bleed-2

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.

 

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…)

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…)

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…)

More on fistulas and fatal haemorrhages

Infected 1This post is about fistulas, the dialyser’s lifeline.  It’s about how and why the 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…)