Salma from Leeds left this comment through the week:

I have just read Maya’s story and I am devastated, I really do feel for her because at this moment my dad is in the same position but thank god he has not passed away, after staying in intensive care for up to two weeks thankfully he is a little better now but still not the same as before and by the looks of it he will never be the same again because of this blow up of his fistula, I would like some help maybe information about what is happening, me, my mum and all our family are going through such a hard time and it blew up because of the NHS staff in Leeds. If u could get back to me I would be more than grateful. Thank you. Salma (Leeds)

Here is my response:

Hi Salma, thanks for your story.   While there is no magic wand, things are not as bad as they seem.  Like they say, the antidote for fear is knowledge, so hopefully I can help a little by giving you an idea of what to expect.

Firstly, while bursting a fistula is quite rare, as long as it is caught early, your dad should recover completely, given time and no more dramas.

What should you expect?

The most likely course of action will be that a vascular surgeon will sew up and close off the damaged fistula and put in a temporary line or a permcath (permanent catheter), which is usually connected to the jugular vein in the neck so that dialysis can continue uninterrupted.  A permcath can stay in place for up to 6 months.  This will ensure that your dad stays healthy while he recovers.

One advantage of this line is that there is no needling; they just connect the machine to the permcath and begin dialysis (sweet!).  There are disadvantages: it can be prone to infection and requires a higher level of infection control during and after dialysis, regular dressing changes, etc.  For the same reason you can’t get it wet, so it is fiddly when you want to have a shower.

Once your dad is stabilised, the surgeon will review the various options for creating a new, permanent access site for ongoing dialysis.

To understand the options, let’s talk about how a fistula is created. Each arm has three arteries that could be used to create the fistula: the radial and the ulnar in the forearm and the brachial in the upper arm.  So if his fistula was in his forearm, there are three other sites that could be used to create a new one: same arm, upper; other arm, forearm; other arm, upper.  If you have looked around your dad’s dialysis centre, you will probably have seen the whole mix: fistulas on the left and right, lower and upper arms.

One of the newer tools available to the surgeon now is vein mapping, where the radiology department of a hospital scans the arm and produces a map of the veins and arteries.  They do this by injecting dye into a vein and recording the path of the dye as it is dissipated through the arm using an ultrasound.  I had a very similar procedure recently and it is not particularly painful or traumatic.

The surgeon uses the map to find a good artery-vein combination, usually with a vein that is fairly deep in the arm.  The surgeon then operates to join the artery to the vein.  The high-pressure artery gradually expands the low-pressure vein to create the fistula.  They choose a deeper vein so that as the fistula grows it is protected somewhat by the surrounding flesh in the arm.  The new fistula may take up to 6 months to grow into a functional access.

If the surgeon can’t find a suitable vein, she may choose to install an artificial vein, called a graft.  The graft is usually made from a Gortex tube large enough to act as an access point pretty well immediately after the wound heals.  There are a couple of disadvantages:

• The body often sees it for what it is, a foreign body, and tends to try and block it by blood clotting.  People with grafts often take aspirin every day to minimise the chance of this happening.
• The graft can get infected, especially if staff and the graft owner are not meticulous about infection control.  Also, since it is a piece of inert material, it won’t get sore like a fistula infection, so there are no symptoms until the infection is well advanced.

However a graft is a good option.  Many people on the BigD have grafts in place for years.

The arms aren’t the only places where a surgeon can create a fistula.  Some people (especially diabetics) may have peripheral vascular disease, which makes many veins unusable.  Other options include creating a fistula in a leg, or even in the neck.  These are not common (I have never met anyone with either).

Finally, many people have more than one fistula through some kind of failure (though usually not for such a dramatic failure as your dad’s), so your dad is going down a well-worn path.  I know it is a horrible time for you and your family but I’m sure you will get through it.

Please feel free to ask for help or support at any time.  Let me know how things go.

I hope this helps a little.  Keep in touch.  Greg