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).
Hi Maya. What a terrible story! I am so sorry to hear about your father’s death and I can barely imagine what it must have been like for your mother and you.
I have taken some time before responding, mainly because I needed to think about what happened and how to react.
Firstly, no, this is not common. I have spoken about it with several people with years of dialysis experience and a senior Dialysis Unit Manager thought that your father “May have developed an aneurysm (a dilation of the fistula caused by a weakening of the fistula wall), with repeated puncturing, which thins the wall and develops scarring and it may have well burst; it can happen anytime and anywhere. I have only seen one burst fistula from an infection in 30-plus years but he was in hospital so we managed to save him”.
Also, I have known blood to flow (sometimes quite fast) from the needle holes if the dressings are removed before the wound has closed. This is especially the case if the person is on a blood thinning drug (like Warfarin), that slows blood clotting. This can happen regardless of the state of the fistula.
But then your father complaining of a sore fistula should have rung all sorts of alarm bells. It could have been anything from infection to a clot or major blockage. If this was the case, your father’s dialysis unit, his care nurse, his doctor or clinic and the hospital may well have some explaining to do. Anything going wrong with a fistula can be life-threatening.
Without knowing more about your father’s situation, it is hard to understand how it could have happened. Did the autopsy offer an explanation? Or is the matter still with the coroner? Sometimes it can take a couple of years to get an official answer.
With regard to what to do, I think the best way to bring this to the attention of the people that matter is firstly to talk to or email the NZ Health and Disability Commissioner. The Commissioner is independent of any hospital or other body, so you can usually be sure that you will get both a prompt response and action. The start the process, go to Making a Complaint . You can begin by discussing your father’s death with Health and Disability Consumer Advocate, or Raise a Complaint immediately.
In both cases request a detailed report. You need to have it clearly explained what happened with a Nephrologist and Vascular Surgeon. Help is available to get things started. I would be surprised if you don’t get an immediate response.
But if you are unhappy with the response, there are several other courses of action: you could contact your local MP – Contact an MP, or an opposition MP, or email your story to the national newspapers, the Dominion Post in Wellington – News (or Phone 0800 DOMPOST), or the NZ Herald Contact News Staff.
Please feel free to ask for help or support at any time. Let me know what happens, and particularly what and why it happened, once you know more.
I look forward to hearing from you, Greg