More on fistulas and fatal haemorrhages

This 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, you can have an artificial graft tube, called a graft, inserted into your arm to provide the same access.  I have written about these and how they work in previous posts.

While our fistula keeps us alive, it also threatens our lives. It is a great big pressurised blood vessel a couple of millimetres under our skin.  A small tear or break, and we can bleed to death in minutes.  Yet we puncture it every day or two and seal it off with a pad or gauze for an hour or so, then we puncture it again.  So just how much of a threat is it?

In February 2010, I wrote a post called 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 trickle of comments about other people who had died or came close to death from a leaking or haemorrhaging fistula.  Coby  wrote about a dialysis patient who nearly died when her infected fistula burst.  Salma’s father was saved by intensive care when is fistula bled out.  Steve’s father bled to death in 10 minutes when his fistula burst after two weeks of problems.  Mek’s father bled to death after multiple bleeds over a few weeks.  Sandy’s husband had an emergency flight that saved his life after his fistula haemorrhaged.  Ebony’s father found his wife on the kitchen floor after her graft burst.

What did these people have in common?  In each case, it didn’t happen overnight.  Their fistulas were red and sore (infected or blocked), or had weak spots that failed to re-seal after needling:  their fistulas needed medical attention.  I have praised the people in my unit before, but they deserve it.  They are constantly examining everyone’s fistula.  If there is a problem, they act: either with antibiotics and treatment or a referral to a hospital or vascular surgeon, to examine and rebuild the fistula.  In a unit of 40 people, I know of at least 10 that have had rebuilt fistulas.

In each of the above cases, this didn’t happen.  Dialysis unit/medical staff missed, ignored or played down life-threatening fistula problems.  And any fistula problem is life-threatening.  In most cases, the person writing the comment was exploring legal action, and rightly so.

So how common are fatal haemorrhages? 

It seems to depend on the quality of the unit.  In a well-run unit, fistula/graft haemorrhages are rare.  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.

What causes a haemorrhage?

Typically, there is some weakness in the fistula or graft.  The owner may go to bed and during sleep lying on his/her fistula, creating a higher pressure than it can take, causing it to reopen a needle access hole, or to tear at its weak point.  Arterial blood at high pressure then streams from the opening.  If no action is taken, that person then dies from loss of blood.

What can cause that weakness?  Signs and symptoms

In a fistula, over several few years, the vein wall can expand a lot.  It can look like you have a mouse under your skin.  I have seen quite a few mice; I have a couple myself.  If the expansion becomes too large (it can look like Popeye’s forearm or an extra bicep), the walls of the fistula become very thin and weak.  Just like a balloon that has been blown up too high, it loses its suppleness and becomes fragile.  With very little fistula wall to repair and only a thin layer of skin over them, access holes can become points of weakness.

As they get older, people in their 70s and 80s, find their skin becomes thinner and more fragile.  Their fistulas will naturally be weaker and less robust than that of a 40-year old.

Grafts, in particular, can become blocked or leak into the skin surrounding access holes.  Blockages build up pressure in the graft, combined with unhealed access holes create weaknesses. Also, since it is a piece of inert material, it won’t get sore like a fistula, so there are no symptoms until the problem (or infection) is well advanced.

Infection, which may start on the outside of a fistula or graft near an access hole, can if untreated, gradually burrow into the fistula and eat away the fistula wall, creating a hidden, fatal point of weakness.  Infection is usually accompanied by swelling, pain and sometimes pus discharge, which are strong signs of potential danger.

Action to take

There are at least two lines of defence.

At the last line of defence, dialysis unit staff and your nephrologist should be watching for signs of fistula/graft weakness, and take action as above.

At the first line of defence is us, the fistula owners.  We need to check our fistula every time we dialyse.

How does a fistula grow as big as magician’s balloon?  One day at a time.  Keep an eye on how big your fistula is growing, and talk about it with the unit staff.  Big fistulas are not only unsightly, they are also dangerous.  Talk to your nephrologist and arrange for fistula surgery with a vascular surgeon to reduce it back to “normal” size.

Look for infection: any pain, swelling or discharge.  Tell your nurse or doctor as soon as possible and begin a course of antibiotics.  Be scrupulous with hygiene.  Wash your hands and your fistula when you arrive, and again before you leave.  Dress and sterilise any cuts or scrapes on or near your fistula.

Look for blockages.  Lift your arm over your head and check that it collapses as the blood flows from it into your body.  Check that it recovers its shape when you lower your arm and the blood returns.

If you find anything you don’t like about your fistula, tell the unit staff.  And 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.
The alternative is too bloody to think about.