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.

In August 2011, I wrote: Dialysis, fistulas and fatal haemorrhages setting out some expert opinion on how to spot the danger signs and action to take to prevent a rupture.

Several people wrote back, saying how they had taken action and prevented their loved one’s fistula from rupturing.  But still, the horror stories keep coming, with more than 30 deaths and near misses posted over the last four years.

Most people posting were still unaware that ruptures could happen and had zero training on what to do if a rupture occurred.

This seems like pretty important information, which should be posted in every dialysis unit and office, everywhere.  So in an effort to get the word out, I have done more research on three areas:

  • Just how common are fatal haemorrhages?
  • The best way to avoid a rupture and
  • What to do if one happens.

Until 2013, apart from the odd passing reference, not much had been written about fatal fistula ruptures.  Presumably most people assumed they were a rarity and not worth the effort.  Then Lynda K. Ball, MSN, RN, CNN, the Vascular Access Specialist for Fresenius Medical Care in Washington State published the excellent Fatal Vascular Access Hemorrhage: Reducing the Odds, in the Nephrology Nursing Journal, of the American Nephrology Nurses’ Association.

Though written for nurses rather than for the proud owners of fistulas, it is right on the money: “..how to recognise accesses (fistulas and grafts) at-risk for Fatal Vascular Access Hemorrhage (FVAH) and implement strategies to decrease FVAHs” (you know the problem has gone mainstream when it gets its own acronym).  For good measure, she also throws in the best technique for stopping the bleeding if the worst happens.  It’s a good read (though the pictures are a bit gruesome).

Here are some highlights.

Firstly, two FVAH factors listed in the paper jumped out from the page:

  1. Fistula/access-related complications had occurred within six months prior to bleeding deaths.
  2. In some states, up to 80 per cent of rupture deaths occurred at home.

We’ll come back to these factors shortly.

How common are fatal haemorrhages?

It seems that no one actually knows for sure, but they are more common than most people imagine.

In the US, End Stage Renal Disease Notification of Death CMS-2746 forms indicated that between the years 2000 and 2006 (the most recent national data available), there were 1654 fatal vascular access hemorrhages.  This represented about 0.4% of deaths of patients on hemodialysis.  However, these are only reported deaths and are considered an underestimate.

It could certainly be double that figure, say 0.8 per cent.  That seems a small number until you realise that there with about 500,000 people on dialysis in the US, 0.8% is 4,000 people.

FVAH deaths don’t seem to be tracked separately in most other countries.  This blog finds out about between five and ten a year from shocked relatives looking for answers, but it is by no means a definitive list.  Posts come from as far apart as the US, Estonia, New Zealand, India and 170-odd other countries around the world.

There does not seem to be a trend by country, rather it is much more local: it seems to depend on the quality of the unit.  In a well-run unit, fistula/graft haemorrhages really are rare.

Which brings us back to the two factors mentioned earlier.

The best way to avoid a rupture

Be fistula fussy

  1. Fistula/access-related complications had occurred within six months prior to bleeding deaths.

Fistulas don’t weaken to a point where they haemorrhage overnight.  The fistula slowly becomes weak, fragile and weepy due to infection, stenosis (reducing blood flow and building pressure) or an aneurysm (the fistula wall balloons and becomes thin).  In other words, red and sore fistulas that are infected, blocked or have weak spots that fail to re-seal after needling are warning signs of impending rupture for both dialysis staff and us.

From the stories posted on this blog, in well-run units, fistula/graft haemorrhages are rare.  Staff check everyone’s fistula regularly and if they see a problem, they act: either with antibiotics and treatment, or a referral to a hospital or vascular surgeon, to examine and rebuild the fistula.

That doesn’t make it any less traumatic for the families when it happens, but mostly, unless you have some specific problems with your graft or fistula, it is not something to lose sleep over.  Most fistulas and grafts are solid and robust.  Fistulas grow slowly and are usually quite firm and elastic.

Be fistula fussy: if your fistula has any of these warning signs tell the unit staff and ask for medical attention.  Don’t take no for an answer.  If they are slow to act, tell them that you consider the problem life threatening.  Make sure they do something.  Tell your carers and get them to tell the staff.  Tell your doctor.  Make a fuss, but get it fixed.

What to do if a rupture happens

Finger press; arm lift

  1. Approximately three-quarters of the deaths occurred at home, in assisted living, or nursing homes.

You cannot assume that medical care will always be at hand for emergencies.  If your fistula starts to bleed you need to know how to deal with it, even if just for a few minutes.

The easiest and safest way to control the bleeding is to:

  • Immediately apply direct pressure over the site of bleeding with a single finger (or more if the rupture is bigger) and
  • Raise the ruptured area of the bleeding above the level of your heart, to make it more difficult for the blood flow to reach the ruptured area due to gravity. (To see how effective this is, raise your fistula arm up above your head now – the blood will quickly drain away from your fistula.)

Do not take time to look for gauze or a tourniquet – these can hide the bleeding area and you may press on the wrong spot – put your fingers directly over the ruptured area and apply pressure immediately, then lift your arm.  Hold the pressure on the site for at least 10 minutes without peeking.

Once things are stabilised, call for medical help.

If someone is with you, they can call while you press on the site (or vice-versa).

 

Pass on this information: print out this or Lynda’s paper and put it on your unit’s noticeboard.  These strategies will help avoid fistula ruptures and save lives – yours and mine.

8 thoughts on “Fistulas and fatal haemorrhages: what to do

  1. A very informative and IMPORTANT blog. I think all patients/carers should be advised about AVF abnormalities & emergency procedures to follow. I’m on HHD & only reported aneurysms in my AVF because of researching that it was abnormal & consequently had corrective surgery. My home sister said it looked normal but I insisted on seeing the surgeon who agreed it needed remodelling.

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  2. I’m glad I found this blog with helpful information about fistulas. My Mother’s fistula currently won’t stop bleeding or rather it starts and stops. She’s had a gauze and bandage applied to it several times over the past couple of days by her technician and the ER. I guess we’re just going to wait until Monday to set an appointment for the same day hopefully with a specialist to inspect the fistula.

    The experience has been rather worrisome for me. I had no idea that fistulas could actually rupture or that a the puncture site could not stop bleeding even if it’s only a tiny drop. Over time however that does amount to a lot of blood, right? Is there really nothing else to do besides wait until Monday?

    Thanks.

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    • Hi Atronkz, thanks for your comment. Sorry I took so long to get back to you. Hopefully the inspection has taken place now and your mother’s fistula is being rebuilt and made safe. This is what is supposed to happen. Staff should notice the problem and arrange a fistula review within a few days, and they should keep a close eye on it. It is when this doesn’t happen that things can go wrong. How is it now?

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  3. I lost my mother to an FVAH last week while she was home alone. The company we contacted to clean up afterwards said they receive four or five of these types of calls every year (Dallas area of Texas, USA), and they are only aware of one survivor among their cases in the past five years. That made me curious so I did a little Googling and came across this blog post. Based on this post, the article by Lynda Ball, and what I observed at the scene, I am nearly 100% certain my mother did not use the finger press/arm lift technique when the rupture occurred.

    I plan on printing out this post and the linked article and taking them to her dialysis clinic and talking about it with the technician there that she trusted the most. Hopefully some good can come out of our loss.

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    • Thanks David. I’m very sorry to hear about your mother. For some reason, there seems to be no education for staff or patients on how to stop this happening. That may change soon. Please stay in touch. Greg

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  4. Lost a great man due to this last week. Happened at home when he was alone. His wife found him. Doctors an nurses should had done something. After treatments the port would start bleeding. His arm had been swollen for days. A treatment was done the day before he passed.

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