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
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.
I am shocked and dismayed reading Maya’s story, I have to say it is nothing short of tragic, but I have heard of it before I have seen one blown out fistula but again it was a result of an infection a patient in a nursing home developed an infected fistula and the nursing home were to dress it daily they failed to do so and the wound broke down thankfully it happened when the lady was at dialysis I was able to apply pressure and have the patient rushed to hospital by ambulance thankfully she was fine, but is to this day one of the scariest experiences I have ever had.
As for the fact the patient complained of pain in the fistuala sadly some nursing staff and doctors are not good at listening to our patients I looked after a young woman who was a needle phobic patient I don’t mean she did not like needles she was phobic about them she would scream and cry and hit out, take large doses of seditives just to get her in the front door, I was away on annual leave whenI returned she pulled me aside cry saying she had been telling her doctor and some staff that her fistula hurt she said everyone tells me it’s in my head but it hurts all the time and I can’t sleep, though she hated being needled she explained it wasn’t that upon questioning her she said the pain was new she had been on dialysis about 8 months then but the papin had started about a month ago, and she was really distressed it was effecting her whole life and no one was taking her seriously because of her needle phobia, I am not saying I am perfect but she asked for my help and I went to bat for her, I would not stop till an investigation of her fistula was performed she said something was wrong and I believed her no ones knows your own body better then you do remeber that.
Long story short when a fistula gram was performed a large segment about 10 cms long on vessel had clotted the fistula was still useable due to colaterial vessels feeding it, but the clotted area had started to die and was causeing pain, in the end the patient had to have major fistuala surgery and had to do single needle dialysis for 8 weeks but the fistula and patient were saved and the patients pain went away.
My advice don’t take no for an answer your health is too important if you believe something is wrong then keep telling people till someone listens.
Hi,
First I am sory to hear what happened to your father. I have been on and off dialysis for almost 25 years. I’ve heard of fistulas bleeding out but have never experienced it myself or seen it first hand. The closest I came was compaling about pain for about 3 months and being told by my nurse practitionor that I did not need to have a fistulagram as long as the fistula was still working. I couldn’t beleive wha he was saying and kept complaining. I finally saw the Dr. and she said IAND SHE SAIFR ce er pf
I have a fistula I used it for four months before my transplant and so far have had no problems. It’s been two years now and my fistula is starting to hurt. It’s turned red in the area where they cut me to create it and it hurts to the touch now. Should I be worried?
Hi Brande. Thanks for your post. Fistulas often block up after a successful transplant. This may be what has happened, to yours, or it may be infection. Either way you should definately check it out with your nephrologist. Any pain associated with the fistula is not a good sign and should be treated.
Let me know how it goes. Regards, Greg
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 informantion 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 then gratefull. thank you. salma yasmin (leeds)
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.
Before we look at 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. If you have looked around your dad’s dialysis centre, you will probably have seen the whole mix: 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 have had this 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. 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 gortex and is 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 one).
Finally, many people have more than one fistula (though usually not for such a dramatic reason), so your dad is going down a well-worn path. I know it is a horrible time for you and your family, not to mention your dad, 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
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My Dad also just bled to death from a damaged fistula. It was horrible. It had burst two weeks earlier and he went to the emergency room. They did nothing but pat him on the head and send him home.
Two weeks later it burst for good and he died 10 minutes later. We believe there was criminal neglect from his dialysis center and at the hospital. We were never told that something like this could happen. Now we find that the warning signs were flashing bright red and the doctors simply looked the other way.
I hope this never happens to you or your loved one. Forewarned is forearmed, but don’t look to your doctors for advice. They can’t be bothered.
Wow, Steve. I am very shocked and sorry to hear about your Dad. It seems hard to believe that medical staff can ignore something so serious. I though a burst fistula was a one-in-a-million thing, but maybe it is more common that any of us think. Being both identifiable and preventable, it should be part of every nephrologist’s and dialysis nurse’s training. I will look into this some more over the next few weeks and come back to you. Regards, Greg
Greg, were you ever able to look into this? I was going to leave it alone, but after reading the experiences of others, I am thinking of taking legal action now. They should have given his arm a rest after the 1st haemorrhage. Why didn’t they? It would seem only common sense. I realize this is backward looking, but I also imagine a doctor would understand this intuitively. Unless he just didn’t give a damn…
Hi Steve. I am talking to a nephrologist I trust regarding the appropriate treatment for potential fistula haemorrhage, signs and symptoms, actions to take. Once I get all I want (hopefully next post) I will put it up and people can compare what should be done to what was done. Keep in touch. Greg
Hi yesterday my dad passed away I feel your pain my dad bled to death also on a day he was suppose to attend dialysis. He had been bleeding from the upper left ARM injection site on and off for around three weeks now. The ambulances have come to the house several times once they took him to the hospital were they controlled the bleeding and sent him home other times they patched and sent him to dialysis well. This time no help. He had been to the doctors and I feel as though not enough attention was used to address this.
Hi Mek. Its hard to believe that anyone can die from a leaking fistula, but your dad’s story, and the others here say different. I am very sorry to hear it. It is a terrible, bloody way to die, for everyone concerned.
I don’t know anything abour your dad, how old he was, how sick, but I wonder why the people caring for your dad didn’t try to use another site, or another kind of needle access. Its not like the leak was a surprise. Giving the leaking site a rest would have allowed it time to heal. Is there any one you can talk to about this? Is there to be an inquest? Let me know. Greg
should you dialysis when u have no food because you are sick whith infuluse type b whith lung infection and a diabetes she is in hospital just stared get food by feeding tube can u help me soon please
My husband just had to fly out to Pittsburgh because his best friend was life flighted there after having his fistula hemorrhage. I’m an RN and I had never heard of this before so I found this site to research it. I can’t believe this is happening! My husband’s friend was waiting to get his third transplant and this certainly sets him back, but I’m just glad he survived when so many others have not.
Hello, my name is Ebony… my mother passed away in April of this yr form a bleeding shunt…. it was horrible my father found her on the kitchen floor… we are seeking legal action… on the doctor, my mother should still be alive today
Hi Ebony. Terrible news about your mother. This seems to be a little more common than “rare”. This kind of tragedy is preventable, given good quality care. Fistulas don’t collapse overnight. Whether from infection or some weakness, it happens over time and is often painful. Did your mother say anything to the dialysis staff? Did they notice anything wrong? It is hard to understand how this can happen in a well-run dialysis unit.
How is the legal action going?
I am writing another post on this subject this week. Please keep in touch. Greg
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hi my name is Debbie I am 21 and have been on dialysis for almost a year and have been having problems with my fistula for half that time. mostly just pain upon dialysis to the point where my my dialysis team put in a catheter. But my arm access just keeps growing and the center staff have pretty much ignored it. I was wondering if and what I can do about my arm. I am worried that it may be close to bursting. My clinic refuses to admit there is anything wrong even though every other medical professional who has seen it says it look very bad bad and they have never seen it’s like before.
Hi Debbie. It is difficult to be helpful without seeing your arm. A bulging fistula is pretty normal. They grow fairly steadily, firstly because of the pressure from the artery and secondly from all the needling. Obviously if the bulge is large, or in one spot, it should be checked for strength. Are the “other medical professionals” kidney professionals? If not, they may not know much about dialysis and fistulas. If they are, you should take action. Your unit should have a specialist nurse to talk to about your fistula (and your dialysis generally). Failing this, make an appointment with your nephrologist. If you are worried, do it soon and keep asking until you get an answer. Keep in touch. Greg
Hi Dialyblog, I apologize for not writing back in a timely fashion…. i believe there was an infection there, but not sure if it was treated. knowing my mother she had complained about the pain in her arm…. im not sure if her center was well run, 2wks after her passing the dailysis unit was closed down by the dept of health…. it makes you scratch your head and wonder why….. as far as the Attorney we re having their expert review our case….. are there any suggestions you may have that would be helpful for me?
Hi Ebony. Probably the best thing to do is to review her dialysis records (staff usually complete a run sheet during each session) and look for notes about you mother complaining of pain or if the staff noticed infection, etc. Also look for any actions taken or planned to be taken. Let me know how it goes. Greg
Hello My name is Jason i have one question i am from almost 16 years on dialysis and my fistula is swollen Is there any danger to burst
Hi Jason. It depends on how swollen. If it is thin and easily punctured, or sore or infected, there may be potential for it to rupture under pressure. The best thing to do is to ask your dialysis team or even better, your doctor or specialist.
Hello, my name is Tracy and although I have an AV fistula, mine was created for plasmapheresis treatments. I have been experiencing a pinching sensation in my arm off and on for several months, but not in the area where the fistula is bulging the most. I regularly receive plasmapheresis, and the staff at the hospital is great, but nobody seems to think the pinching is an issue. It is the same type of pain that I have when my fistula has blown during pheresis, but to a lesser degree. My primary physician has planted the idea of my fistula blowing because it’s too large, and now I am paranoid. My question is this: what type of symptoms are indicative of a weak or leaking fistula?
Hi Tracy. Symptoms include bleeding during treatment, having to wait a long time for bleeding to stop after the needles are removed, some kinds of pain. How large is large? I have friends that had fistulas up to 100mm (2in) high in heavily used areas, that really were too large and had fistula surgery. How large is your fistula? Greg
I’m so sorry about your dad. I’ going thru some problem too. I had my fistula 1 month ago. I can hear the buzzing sound but arm is swollen from elbow to my fingers. I called the doctors office for many many time but no reply at all. They promise to call back but never did. I have to wait for 2 more weeks to see the doctor. Hope I still can leave till than. Probably they return my call once I die:(
HI! I once witnessed a 67 year old man which they rushed to an emergency room because he was experiencing severe chest pain and difficulty of breathing. When the medical practitioners checked his history they found the patient had undergone heart surgery and was undergoing hemodialysis. His vital signs were monitored BP, SPO2, RR, all ok except for PR it was very fast..but the main problem was his sugar its very low at 27 mg/dl only.
Now, I noticed that the patient’s left wrist had some deformities but still the nurse inserted cannula on the brachial site but did not withdraw any blood from that..so what happened was the patient had cannulas on both arms but the line was hooked on the right arm …
After a while when the patient became stable the family burst out in anger: why did the nurse insert a cannula on the site where the fistula is located? The nurse replied in a calm voice that in cases of emergency immediate access of line must obtain so that if ever the patient will go on arrest there will be an immediate line to push the emergency drugs..is she correct?..
And is it a major problem if somebody took blood pressure on the arm where the fistula is located?
Hi Hanyd, thanks for your query. It is NOT normal practice for non-dialysis staff to put blood test needles into the fistula or to take blood pressure readings on the fistula arm. This is because an untrained person may cause infection, or bleeding, or damage the fistula. However, trained dialysis nurses may choose to take blood from a fistula if the other sites are difficult (I have had blood taken from my fistula using a small blood test needle by dialysis-trained nurses in the past). They understand that the fistula blood is under great pressure and if not well controlled, could squirt out and cause problems.
Also, some nephrologists take blood pressure readings from fistula arms. However, this is because they know what they are doing. They are making a judgement that the fistula is strong and running well, and will not rupture or be otherwise damaged. Regards, Greg
I am presently having a problem with my so-called