Dialysis: death via a damaged fistula

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.

60 thoughts on “Dialysis: death via a damaged fistula

  1. 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.

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  2. Hi,
    First I am sorry 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 complaining about pain for about 3 months and being told by my nurse practitioner that I did not need to have a fistulagram as long as the fistula was still working. I couldn’t believe what he was saying and kept complaining. I finally saw the Dr. and she said I needed surgery, which saved my life.

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  3. 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?

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    • 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

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  4. 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)

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    • 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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  5. Pingback: Dialysis: surviving and recovering from a damaged fistula | Big D and Me

  6. 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.

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    • 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

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      • 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…

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      • 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

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  7. 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.

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  8. 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

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  9. 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

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  10. 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.

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  11. 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

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    • 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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  12. Pingback: Dialysis, fistulas and fatal haemorrhages | Big D and Me

  13. 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.

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    • 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

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  14. 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?

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    • 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

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    • 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.

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  15. 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?

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  16. 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

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  17. 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:(

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  18. 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?

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    • 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

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  19. Hi, this is pankaj sharma here from india. my dad is doing dialysis since last 5 years 3 times in a week. his first fistula was perfectly fine for first 4 years and after that he did 2 fistulas in a year both couldn’t sustain more than 5 months. For now dr. put line from his neck for temperory dialysis. He had 2 fistula on his left hand so dr. says we can’t do on that hand either on right because flow is not good on right. I wanted to ask u that if fistula did on left n not working now, can we restart fistula or do new one on same hand..?? pls lemme know so we can take decision. He is admitted in hospital right now.

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    • Hi Pankaj. If it is not working well, it may not be wise to try another fistula on the left arm. However, there are other options, including inserting an artificial graft to replace or bypass the non-functioning fistula, as long as the blood flow is sufficient.
      From Wikipedia “Grafts are much like fistulas in most respects, except that an artificial vessel is used to join the artery and vein. The graft usually is made of a synthetic material, often PTFE, but sometimes chemically treated, sterilized veins from animals are used. Grafts are inserted when the patient’s native vasculature does not permit a fistula. They mature faster than fistulas, and may be ready for use several weeks after formation (some newer grafts may be used even sooner). However, AV grafts are at high risk to develop narrowing, especially in the vein just downstream from where the graft has been sewn to the vein. Narrowing often leads to thrombosis (clotting). As foreign material, they are at greater risk for becoming infected. More options for sites to place a graft are available, because the graft can be made quite long. Thus a graft can be placed in the thigh or even the neck (the ‘necklace graft’).”

      Ask your father’s doctor to see if this is an option. Regards, Greg

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  20. HI My name is Robin, my husband has been on dialysis since 2008. He recently went to dialysis, and a new technician approached him and said, that I know that you are particular about who sticks you, just wanting to let him know that she has been a dialysis technician for 30 years and that It was her first day in this office. So my husband agreed to let her stick him.. When he rolled his sleeve,she told she was not going to touch that, because he had 3 aneurysms in his arm.

    Now he has been schedule for 3 surgeries this month. Nephrologist dropped after he brought to her attention.

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  21. My husband is going to be 74 years old in six days. This is his second time to be on dialysis after a kidney transplant failed 1 1/2 years ago. He is a diabetic and has been in the hospital last 2 weeks, having (2) stints in the leg where he has just lost two more toes….

    All of that to say: he was discharged to Skilled Nursing Center 1-25-13 (Friday night) very late. By mid-day, next day I am at Skilled Nursing …. A STAFF MEMBER INFORMS ME THAT EARLIER SHE TOOK HIS BLOOD PRESSURE AND THEN PROCEEDS TO DISCRIBE HOW IT WAS DIFFICULT TO GET IT. FYI: SHE TOOK IT ON THE ARM WITH THE FISTULA !! ?? FIRST ON THE WRIST… AND THEN ABOVE THE ELBOW (WHICH IS ALSO ABOVE THE FISTULA). Of course this is wrong to do on so many levels…by now I am very concerned and have called the nephrology office (it is early Sunday morning). The doctors says he can’t do anything now ?? He said wait… until my husband leaves Skilled Nursing for dialysis tomorrow (Mon. 1-28-13) and they look at him there. Oh and the doctor actually said “You can’t blow a fistula by putting a BP cuff on it ???” I have always taken such good care of him……. I told them at the Skilled Nursing .. No BP or sticks in the right arm!! Is there anything I should do differently before Monday ??????

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    • Hi Geneva. It is always a problem when a dialysis patient is sent for care to a centre that does not specialise in kidney disease. Most general nurses (and many doctors) are amazingly ignorant about the care and management of kidney patients. But usually this means they are scared to touch fistulas and take exaggerated care.
      This Skilled Nursing Center sounds very poorly named. There have been times when I have had BP taken on my fistula arm – but only by the surgeon who put the fistula in, to check it. Also, the rule is to never use the fistula arm to take blood for general blood tests, to reduce the risk of bleeding and infection. But as long as the fistula is strong and mature, there should be no permanent damage.
      But you are right to call the nephrologist. It rings loud alarm bells when a general nurse seems to both ignorant and gung ho, and could well do some harm.
      It is so frustrating for you both. I would certainly make a fuss, and lots of noise about your husband being sent to an inappropriate center that exposed him to unnecessary risk. Please let me know what happens. Greg

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  22. Hello I am new here I have a family member who need this surgery but she is not here in NZ but would like to come over to have it done here. Can someone please direct me to who I should call or contact and also how much does it cost. I live in wellington.

    thanks Susie

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  23. Hi this past Saturday my husband’s fistula burst. There was blood everywhere. I never seen anything like it. I quickly made a tourniquet and applied pressure until the paramedics arrived. I was told that had I not did this he would have bled to death. He is still in the hospital as of now with a catheter in his neck. He had been complaining that his arm was hurting for months but everyone kept blowing him off. He has had other complications with this fistula prior to this from it being infiltrated twice. Should I seek legal advice? I think this could have been prevented.

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    • Tracy this seems to be a depressingly common story. I would definitely seek legal advice. It’s not as though there are no warning signs. The signs are there, yet staff seem to too busy (or just don’t care enough) to take the standard action in these cases, and refer him to his specialist. Thank goodness that you were there. Many others have not been so lucky. Go for it. Greg

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  24. Its been 15 years since my mom had a kidney transplant and her fistula never gave any problem until now…..her fistula has swollen, there is redness around it and the thrill is gone. Doctor said it needs to be removed and operation is risky. I am very worried. What should i do ???

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    • Hi Sabra. It is common over time for a fistula to close off after a transplant, however the redness may indicate infection, which is very dangerous. The riskiness of the operation depends on your Mum’s age, if the transplant is working well and how healthy she is. But it may be the lesser risk in this case. Have a talk with her doctor, and ask why he says it is risky and what could happen if he doesn’t operate. Then at least you can both make a more informed decision. Good luck. Greg

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  25. Hi, my mom passed away over a week ago. She started hemodialysis over a year ago. Last week her fistula site was very swollen and painful. She had dialysis last Tuesday and she was sure she will be hospitalized, she even brought her hospital bag. They did an ultrasound which didn’t show a blood clot, but it showed fluid and edema. She was seen by vascular surgeon who told her to go home and pray for the arm to get better ?! That night my mom bled to death from the fistula. I have spoken to the doctors but obviously they deny any neglect in this case.

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  26. Sirlyn, it is so sad and depressing to hear that it has happened yet again. I am sure it was deeply traumatic for you both. And yet another tragedy that was totally avoidable if the doctor that examined her had treated her seriously, instead of giving such an offhand, flippant response. I would certainly seek legal advice. Greg

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  27. Hi Greg. I have tried getting answers, contacting different organizations. I got a reply from Estonian Society of Nephrology. They said they don’t see a neglect or mistakes made by the doctor. I don’t know what to do. Some of the nephrologist who belong in the Society are the same doctors who dealt with my mom. There have been cases even the expert group who work for the Ministry of Social Affairs doesn’t make independent decisions. They protect the medical doctors instead. Estonia is a very small country. The negative side is my dad didn’t ask for autopsy so the head of the Nephrology was saying how do they know she didn’t die of heart disease or something else. She bleed to death from infected fistul for f sake!!!! I’m just angry and disappointed.

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    • Hi Sirilyn. I feel for you! Most people who suffer because of a doctor’s mistake would actually be satisfied by a simple but heartfelt apology. Sadly, while individually doctors can be wonderful, helpful, valuable people, collectively they protect each other in a very unattractive, almost unprincipled way. Not admitting fault makes us all feel as you do: wronged, angry and frustrated. I’m sorry I can’t help more, but at least here you can vent some of that frustration. Greg

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  28. 13yr post kidney tx n just now spilling little protein n the urine. Blessed for the 13 yrs. however my fistula has a faint pulse, no vibration n elbow area anymore, swelling n redness, painful n itches too. Running low fever 99.6. Saw my nep n he put me some antibiotics to prevent getting Sepsis. He said I have a lot of tummy issues n partly could be from my mom n law who has Alzheimer where she gets her poo on things. However,The swelling has gone down a bit, but still reddish on vein n the vein feels hard now. Still running low fever n taking Tylenol for it. I have 2 days left of antibiotics n suppose to call my nep back Friday when done. He seem like for now I am okay. Should I be worry? For I still like no all jolly yet.

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    • Hi Debbie. As you know, most people needing to start dialysis have their fistula in place and working as much as 12 months before. Its a difficult time, when the transplant if failing and yoiu are facing a return to dialysis. It is important to be as well as possible, to extend the life of the transplant and when starting back on dialysis.
      So now would be a good time to have some work done on the fistula, to make sure it will be a low stress return to dialysis if and when. I would ask my nephrologist and if he/she agrees, get it set up with a vascular surgeon. For the same reason, you are right to try to knock any infections out of the equation. Good luck and stay in touch. Regards,
      Greg

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  29. On Thursday 26th March my soul mate bled out in my arms in under 5 minutes. A kidney patient at a state Hospital in South Africa for over 10 years. For 6 weeks they couldn’t dialyse him properly in his AV fistula due to a suspected clot. Never investigated or treated this, just ignored. His fistula swelled up and he complained of pain, only for a surgeon to tell him 3 days prior to his death that it was just infected and not to worry, giving him only charcoal patches. He spoke of his fear of it rupturing for 3 weeks, they said it wouldn’t happen. They never trained him what to do if it did rupture. He was 32, i’m 26. I was found to be a perfect match to give him a kidney in September last year, the long wait and lack of urgency from the hospital never got him my kidney. His death was ruled unnatural, the pathologist found several clots in his arm and NO infection. He had dialysis within 24 hours of his death and they did nothing. He died from neglect. No word from the hospital and they killed him. How many more will they kill?

    Jaun, died at 32 years old. He was very sick as a child, operation after operation his entire life. He was put on an antibiotic called Septrum after constant infection as a baby, which ultimately caused his kidneys to fail at 19. They never made his mom aware of the long term affects of using it. He spent his entire life fighting. His mom’s only child and the light of our lives. For the last few weeks of his life he complained constantly of pain, throbbing and weeping of his fistula. He started missing work due to the fear of it rupturing, but the hospital gave him no reason to worry. I woke up to him screaming for me that morning and walked into a bloodbath in the bathroom. We got him into the car and took him to a mediclinic, the closest hospital to where we stay. He was pronounced dead. I was sitting with him in hospital a few weeks before during dialysis and they could not dialyse him properly in his fistula saying it was clotted. I spoke to the transplant coordinator, letting her know about this and asking that she intervene. They did not follow any procedure, investigate it any further or show any concern, they just stuck the needle into another vein further down his arm, and continued to do so until he passed away. He didn’t know what to do when it ruptured, they didn’t teach him the procedure that could have saved his life. As the person he lived with,even I should have been trained. The pathologist at the mortuary found not one, but MULTIPLE clots in his fistula, something that should never have been ignored, and there was no infection whatsoever as diagnosed by his surgeon. Should they have suspected infection, they should have prescribed antibiotics, not even that was done.

    Can anyone tell me what steps are meant to be taken, from experience, when a clot is even suspected?

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    • Hi Kerri. I am very sorry to hear about Juan. What a terrible, tragic story that could have been avoided by early action.
      From what you say, his fistula was certainly clotted, but it must also have some kind of weakening of the fistula wall. This can happen as a result of repeated puncturing where it has no time to heal. It becomes thin and the needle holes become weepy and hard to stop bleeding when the needles are removed.
      What is meant to happen is that the dialysis staff should have referred him immediately to his kidney hospital for a fistulagram to identify and remove the clots, and probably a rebuild, where the weakened area is removed or bypassed.
      With regard to what to do now, I am not aware of the kind of recourse that is available to you in South Africa, but as you say, at the minimum you need to do something to make sure it doesn’t happen again.
      Start by talking to the person that heads the organisation responsible for Juan’s care. You know what happened from your viewpoint; find out what happened (or didn’t) and why from the unit’s viewpoint and what is being done about.
      Don’t let it go without saying something. Make a noise and with luck you will make a difference for others.
      I’m sorry I can’t help more. Please keep in touch and let me know what happens. Greg

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  30. Pingback: Fistulas and fatal haemorrhages: what to do | Big D and Me

  31. I envy all of the survivors of fistula haemorrhages. Reading the stories made me happy that some had survived. Others had made me sad that people had not survived. Luckilly some of them were (hopefully) at peace when they died; eg. in their sleep.

    My father wasn’t so lucky. He had his haemorrhage two times before the last. The final time; he apparently bumped it on a counter in the bathroom, whilst getting off of the toilet and back into his wheelchair. (he was relatively healthy aside from some mental issues and almost non working legs due to a fall.) I couldn’t even begin to imagine what it feels like to bleed to death. He had built his own computers; played games with his daughters, read stories and was an awesome father. (he also travelled to Germany and was in the army.

    Admittedly it made me cry reading this page; getting me to is relatively hard most of the time. I’m glad for the survivors. Well; would like your guys stories to cheer me up at the moment, despite not even knowing any of you, as well as this being a wall of text with little to no emotion present… There surely is emotion in the being behind the keyboard. The doctor could have fixed it before it blew the third time… He neglected to… Now what? We have all ready filed for his death, cleaned out his apartment and done all of that jazz… I can’t even recall the last thing I said to him… I may be one to hide my emotions but: “still waters run deep”

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  32. Hello I have a question…my mother recently past away from an infection supposedly, she was diagnosed with lupus but also had problems with her blood pressure and was in dialysis. She recently had the fistula inserted into her arm, but she had fever each of the specialist sent to another back and forth until she ended up in the hospital. She seemed fine but slowly became more and more ill. In conclusion one of the techs withdrew blood from the arm were the fistula was placed they said nothing happened but she bleed a lot and no one noticed until my aunt saw all the blood. So my question is could that also been the cause of her death?

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    • Hi Norma. What a terrible time for your mother and you. I’m sorry, I can’t be much help to you without knowing the details of what your mother’s illness and what she went through. It is common for fistulas to bleed after needles are removed. If staff don’t put pressure on just the right spot, some may bleeding may occur, but not usually enough to do harm. If the fistula was new, it is unlikely to rupture and cause massive blood loss.

      The best thing to do is to talk to the supervisor of the ward or unit: ask what happened and why she died. Don’t be put off; make sure you get the answers you need to understand. Regards, Greg

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  33. My name is Wayne and I read several of the posts and became worried. I’ve been a kidney patient for 14 years and had my fistula converted into a hybrid with graft material added for 13 years. It recently became blocked and I was told that it was not a big deal by a surgeon. The posts above say otherwise. What is the recent evidence about the rate of failure to the rate of bursting when it comes to the AV fistula in patients? The surgeon wants to abandon this fistula and put in another. If it is safer to re-establish this one and not risk it later popping I’d like to know.that as well. Thanks

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    • Hi Wayne. The good thing here is that the surgeon is already involved. It’s when they are not involved that the problems can start. I would feel fairly safe relying on his opinion. Also, it is unlikely that your blocked graft will rupture, unless there is pressure, swelling and weeping anywhere along its length. The best approach is to discuss it with the surgeon and let him know your fears, and why. If you are not confident of his replies, by all means get another opinion. Cheers, Greg

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  34. Hello,
    My grandfather has been on dialysis for two weeks and two days ago my grandfather’s fistula burst open and he started bleeding in the middle of the night. At first he thought that it was raining and the ceiling was dripping until my grandmother turned on the light and they saw that there was blood everywhere, on the bed, the floor and the wall. They called an ambulance and when he arrived to the ER the doctor could not stop the bleeding until he applied two tourniquets on his arm to cut off the circulation and he put a couple of stitches where the fistula was bleeding. He was released today (not even 2 days at the hospital) and they could not give him an answer of why he started to bleed out. Apparently the doctor from dialysis unclogged the fistula two weeks ago and they put a couple of stitches on his arm and they took them off about 5 days ago. I don’t know if this might be a cause for him almost bleeding to death. What can we do? Should the nurses at his dialysis center been monitoring his fistula? We are scared that it might happen to him again.

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    • Hi Claudia. What a horrible thin to happen to your grandfather! It’s lucky he is still with us. Only on dialysis for two weeks? It is hard to understand what went wrong. New fistulas are soft and not as strong as older, tougher ones (that are strengthened by scar tissue). But There must be something else involved. The best thing to do is ask the hospital and your dialysis centre manager for written reports about your grandfather’s treatment, his fistula how this could have happened.

      Certainly make sure that the nurses monitor his fistula – and you too: take a photo of his fistula before and after each session. This will help you keep track of it and when they see you taking photos, it will help keep the dialysis staff on their toes. Good luck and keep in touch. Regards, Greg

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    • Hi Claudia. A fistula that ruptures after only 2 weeks is unusual. New fistulas are usually soft and pliable, but usually quite strong. I don’t have enough detail to know why it happened, but perhaps the dialysis centre inadvertently weakened it when unclogging it. Hard to say.

      But you need to know what caused it so you can take action to stop it happening again. Ask both the dialysis unit manager and the hospital doctor that treated him for a meeting to find out why it happened. Ask for a copy of his treatment notes. Hopefully, they have already taken action to fix the problem, but you and your grandfather need to be sure. Let me know what you find out. Regards, Greg,

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  35. I lost my dad in Wednesday 😦 I am so angry after reading this post and several other websites. He had had dialysis on Tuesday so the nurse should have noticed if anything was wrong.. correct?? We found him Wednesday. Aparently he was walking out of the bathroom and it ruptured. It was so bad the officers started a murder investigation . They knew his medical history but had never seen so much blood the way it was.. what can I do to get answers?? I want to know Why his nurse did not say anything. I want to know did my dad suffer?? Someone told me it takes about 6 to 8 minutes. My question is how long was he awake? Did he know what was happening?? My brother is beating himself up thinking he could have stopped it.

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  36. Hi
    Hoping you could answer my question. My mother is a long-standing HD pt. She has a non-functioning fistula in her right forearm. She dialyses via a right upper arm fistula currently. It is really painful and tender. No swelling or erythema. What is your differential and what would be your first step in managing this case. Respectfully

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    • Hi Susie. If the site is new, your mother may need to give it time to settle. If it is only painful sometimes, it may be a needling problem and you or your mom should ask for a different person to insert the needles. If it is a more established fistula painful, I think the best approach would be to talk to the unit manager and ask for a fistula assessment, or fistulagram. This is usually done by a vascular surgeon who should be able to find and hopefully fix the problem. Good luck and stay in touch. Greg

      Like

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