Dialysis, fistulas and fatal haemorrhages

This post is about fistulas, the dialyser’s lifeline.  It’s about how and why the 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 lie 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 sometime 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 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 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.

61 thoughts on “Dialysis, fistulas and fatal haemorrhages

  1. Wow, what a story, My mother is on the Big D and has been having problems with her fistula, soreness, swelling, bleeding she has had the blown put in a couple of times this year. One of her tech suggested on Tues. she see the Vascular Doctor because it looks like it may burst. So when I read these stories it really scared me at first, anrged me and than made be grateful that you took the time to educate me for Monday when we go see her surgeon. I will keep you posted on what he says, but because of you and all of the others that have gone through something I have more questions that I did before I read your blog.

    • Thanks for your comment Renee. Yes it can be a scary situation. One of the people in my unit was rushed to the hospital for a fistula repair just yesterday. He will be fine because the nurse in charge knew her stuff. I hope all goes well for your mother. Yes, please keep in touch! Greg

      • My husband had a fatal burst while sleeping almost died. I woke just in enougj time to start applying pressure and getting him to the ER. I was told it was an aneurism that burst in his fistula. The doctor also said there should have been noticing a problem with it especially after dialysis…it was taking a long time stopping the bleeding. I brought my concerns to his unit which basically gave excuses about what they usually do. The only time they ever send him to the surgeon was when they could not stick him or his venous pressure was high. My husband is now very anxious because he is afraid it will happen again. I don’t know if I should make it a legal matter.

      • Hi Priscilla. Thanks for this important comment. Yes it makes you wonder how bad things have to be for staff in some units to notice that there is a problem. Especially when you brought it to their attention. It’s not like an aneurysm appears overnight. It was very lucky that you caught it when you did. However, it may be difficult to go to another unit, so take it slowly. First have a discussion with the Unit Manager, or Dialysis/Health Service Group Manager. Tell them that the surgeon said it should have been picked up at dialysis and that this was a serious, life-threatening incident, saved only by your action. Ask if it can be followed up and that perhaps they should have a protocol for identifying unsafe fistulas. If this works out, fine. If not, you may decide to take it further and perhaps consider legal redress. I hope it all works out. The ultimate objective is not revenge or even satisfaction, it is that your husband feels safe at dialysis in the future. Let us know what happens. Regards, Greg

  2. Hi Greg,
    Thank so much for replying to me. My mom and I went this morning and the doctor suggested a graft be done now, because the skin over the fistula is so thinned out, he says it can burst at anytime, that it could even happen in her sleep and she could bleed to death. I am concerned for the graft because he says if that doesn’t take he will have to insert another catheter. My mother is 72 years young and trying so hard to hold on, have you ever heard of the fistula being turned off and a graft being used? if so please tell. I asked the surgeion if it was his mother what would he do he said he wouldn’t do anything to a patient he wouldn’t do to his own mother. He has been good as far for what good I know as well as her Dialysis center team. Please keep us in your prayers and thoughts…Renee

  3. My Mum has been dialysing for about 7 years, she is 78. In the last 10 days she has had 2 ‘bleeds’ from her fistula, through an over used needle hole. The first bleed happend during the night and luckily, she woke up in time to stop it – the second happened in the shower 2 days ago – my Dad is so frightened when it happens – they called 999 and thankfully a paramedic arrived in 7 minutes and stopped the bleed, Hopefully the nephrology unit and her consultant will now get to the bottom of it and sort it out before it becomes fatal. Very scary stuff.

    • Hi Julie. I certainly agree with you. I presume that the staff are using sharp needles, and they vary the location of the puncture hole at each run. It may be worthwhile to have a fistula review, where they use an ultrasound to check that the fistula is flowing well, has no weaknesses, etc. As we get older, our skin and the vessel walls get thinner naturally and we need more care after needle removal. It may be that she needs a new fistula, or simply to rest the area of weakness until it builds up some strength. She could also look at buttonholing. Greg

      • Hi, I am 75 and have been on dialysis for about 4 years. I am now on home dialysis which is very good. I also noticed my skin over the fistula seemingly getting thinner. I talked it over with my chemist and he suggested pure vitamin oil. It has now been some 3 months and, at least for me, seems to have thickened the skin. Which is a great relief. Dirk de Rooy. ps kidney cancer of both kidneys reason for dialysis.

      • Thanks Dirk, great tip! I have the same problem (aggravated by Prednisone). I will definitely give it a try!

  4. Hi, I have been on dialysis for almost 10 years and have never had a problem with my Fistula until recently, Our renal unit changed over from the “rope ladder” method to the “Button hole” method of needling, Also having difficulty getting Tinzaparin they changed us all onto Clexane. This was ok for a while but then i noticed the venous needle site was getting quite big and i was bleeding for longer after the session.
    The site then was stopped being used and re-sited but the old site never seemed to heal properly and just scabbed over. For the last month or so ive not been having any clexane or anti coagulant and ive been getting 4 hours just fine! Weird!
    Last week i was just getting into bed when my partner noticed i was bleeding from that site, it soon turned from a trickle into a mssive gush that we had great difficulty in holding. I was sat at the bottom of the stairs in a big pool of blood thinking i was going to die of blood loss, She rang 999 and the ambulance crew had to try and hold it until i got to A&E.
    It took 3 hours of staff holding it until it stopped bleeding, The next day the fistula was operated on to reduce the size a bit, i am currently waiting for it to heal properly before use and have a temporary neck line in.
    When i do start using the fistula again i will insist on going back to the “rope ladder”method!

    • Wow Simon, what an experience! I always thought that a fistula haemorrhage was an unusual event, but since writing about Maya’s experience and then seeing the steady stream of stories from around the world, I am learning fast that a fistula haemorrhage is always a possibility. It is not a rare event. The slightest change in the look and feel of a fistula is a red flag.

      It sounds like your first ever buttonhole became infected. An increased possibility of infection is one of the known problems of buttonholing, simply because you are using the same hole day after day. And the highest risk time is when you are starting to buttonhole. Why? Because it’s new to everyone, especially you. I think a key buttonhole training element is to include a practical session on washing your fistula before use. Before I used the technique, I know I had become a little careless about the BigD pre-wash. Luckily the nurse training me watched my preparation and for a week or so, would not start until I had washed my fistula to her satisfaction. I use just a little more antiseptic wash than I need and rub until I have a coating of white suds all over my arm, not just around the fistula.

      I can absolutely understand that you are very shy about resuming buttonholing. Stick with what you know works, and maybe give it a try in the future.

      I’m very glad you are still with us! Greg

  5. Pingback: Dialysis and the Best Laid Plans | Big D and Me

  6. My boyfriend bled to death in October 0f 2011 when a scab on his fistula broke open and he was alone. He tried to stop the bleeding but passed out and died. I came home to find him unconscious on the bed and the room looked like a crime scene with the blood. I was horrified and have never gotten over it. It was a horrible way for him to die.

    • My Dad died yesterday from a bleed out He was on dialysis for 10 years , a model patient and he died , exactly what happened to you , except he tried to fix it himself before calling my mom . blood was everywhere in the bathroom , my mom was frantic she said she never saw anything like it , she tried to control it , he felt faint , she ran and called 911 , when she went back he fainted and fell and hit his head I still am in shock , my dad was fine the day before . his fistulas always scab over and looked like the bolts from frankensteins neck… I still am in shock , i don’t believe this had to happen . all this happened at 3 in the morning , I am heartbroken ………. and scarred for life

      • Hi Natalie. I’m so sorry about what happened to your Dad, it was just horrible. Firstly, spend as much time as you can with your Mum so you can support each other through this shocking period.

        Fistula ruptures are relatively rare, and there are usually warning signs. If the signs are noticed and action is taken, many can be avoided, though not all. When you are up to it, talk to the people responsible for his dialysis. Ask about how and why it happened and what is being to it happening to others. It won’t help your Dad, but it may make a difference for others. Greg

  7. my 73 year old mother recently died in a nursing home,when the 1st shift nurse went to check on her, she had already bleed out and was not responding and rushed to the hospital where they tried CPR, but she was already dead.I’m so heartbroken wondering and thinking could this have been prevented and the doctor at the hospital stated they would not be doing an autopsy because she had too many other illness and problems. I had to bury my mother left wondering when was the last time they checked on her and did they check her arm or did they just check to make sure she was asleep. I’m heartbroken and can’t understand how something like this can happen in a nursing home where they are supposed to turn my mother every 2 hours. I’m thinking about how to seek legal action

    • My boyfriend died last October (2011) when his fistula burst. He always had scabs in the areas where they put his needles in dialysis. In late August of 2011 we were taking off his bandages from dialysis he had earlier in the day and the top (venial) opening shot out blood like a gyser. I was there so I helped him put extreme pressure on it while I called 911. The paramedics where able to contain it until we got to the ER. The ER doctor tried twice to unravel the material that was holding it closed, only to have blood shoot all over the room we were in. Housekeeping had to come in twice to clean it up. Finally the ER doctor called for a vascular surgeon who was able to control it and stitch it closed. A few weeks after, that scab, with the stitches came off but there was another scab underneath. His dialysis clinic clearly saw this and did nothing. Then on October 17th he was alone in the house as I was not home from work yet, I can only guess that the scab broke loose and he tried to control it but bled out. I walked in to find him dead on our bed and the whole place looked like a crime scene. EMT’s came but it was too late. I was and still am totally heartbroken. The coroner ruled his death accidental and I could not even get the insurance company for one of his home loans to pay the insurance against the debt because they claimed it was medical related and not accidental. People with ESRD do not die this way. I was bullied by these people. I wanted to file a wrongful death lawsuit but I really don’t know how to begin because all these medical people are bullies too and they have their ways of making everything seem like it’s not their fault. I despise the medical industry and always will. I am so sorry for the loss of your mother. This is a terrible thing and a terrible way for people to die.

      • Hi Pat. What a terrible story! I am amazed that the vascular surgeon didn’t contact your boyfriend’s nephrologist and arrange for a new fistula. That is the usual treatment. And no action from the clinic is disgraceful. You are right: since the medical profession became an “industry” and combined with that other beacon of compassion, the insurance industry, individual care and accountability seem to have disappeared down the money hole. I can certainly understand you anger. In your place I would definitely find a sympathetic lawyer and talk through my options. Please keep in touch and let me know the outcome.

    • I am really sorry to hear about your mother. Since writing this post I have been very surprised to find that fistula haemorrhages are so common. Every month or so, someone writes about a story like your mother’s. Dialysis nurses and technicians should be watching for them constantly, especially in older people whose fistulas are less resilient. However, I doubt that the staff in the nursing home are trained to look for weak or weepy fistulas (though they should be). Maybe litigation IS the answer. It could raise the profile of this problem and hopefully help prevent future tragedies that cause so much heartbreak. Please keep in touch and let me know if you proceed. Greg

  8. The information and stories everyone has shared, really hit home with me. My mom, whom is a retired nurse and in her early 70’s, has been on dialysis for over 3 years. Over the last 6 treatments she has been having lots of problems with unable to clot after her dialysis treatments and is bleeding at least 45 minutes each time. The doctor finally sent her this past Friday to the hospital to see what was going on and found she has a whole in the vein and artery wall. The artery was repaired, but she has to go back in 2 weeks to have the vein repaired. I’m praying that God will heal her and keep us with us longer. Lastly, my husband has SLE which attacked his kidneys causing end stage renal dx and now he might be starting dialysis. He already has his fistula and when he heard about my mom he become even more scared about starting dialysis.

  9. Reading these stories and i cant help but break down. My father died on May 16th 2012. He died alone at home, with the phone in his hand. He was told in 2009 that his kidney’s were not functioning as they should. I got the call from the hospital that he needed to go into surgery asap to have an AV Graft inserted. Since my dad got this av graft it changed our lives forever. He was given dialysis three times a week for about 3 to 3 1/2 hours. My dad always had pain in his arm, his skin started to get dark and he had numerous bleeding out incidents. some were after treatment and others where on his off dialysis days. The day my father died was a Wednesday an off treatment day. From what i seen after my dad was sitting in the living room sorting bills. My question is why? how could this happen when a person is sitting on a sofa chair sorting bills. My dad got up from the living and went to the next room over which was the kitchen. The kitchen showed a man desperate to save his life. There was blood all over the kitchen, towels, and handful of napkins bunched up in balls full of blood. My dad didnt have time to dial any ones number he sat on a chair in the kitchen with his hand laid across a freezer with the phone in his hand. The blood in that room was a nightmare, these 5 months for me have been hell, there is no way that this can continue to happen to families. My fathers cause of death was Hemorrhage due to ulceration of AV Graft . Something needs to be done, there needs to be an awareness of what happens when things go bad with something that is suppose to prolonged and help individuals lives.

  10. Add my father to the list. After almost 8 years on dialysis, he died from “dialysis shunt bleeding” in a matter of a minute or less. He had been having problems with bleeding for some time and his doctor had stitched his up just a couple of weeks before he died. My mother said he got up from the couch to go to bed because he was “feeling tired” and he had gotten into the bedroom when she heard him say “I’m bleeding!”. She went to get a compress, but by the time she got from the bathroom to the bedroom he was gone and the room and bed was covered in his blood. He took good care of himself and my mother watched his diet carefully. I can’t help but feel this shouldn’t have happened. And, now that the shock has worn off, I am feeling very angry that it did. Now, at 83′ and after 60+ years of marriage, my mother is alone and deeply depressed on top of her short-term memory problems which makes it all even harder on the rest of the family. She has always been so strong and to see her so lost and in so much pain is almost too much. There is NO EXCUSE for this.

    • My boyfriend died the same way. He was 61. His fistula had ruptured and he was alone and bled to death and that was how I found him, with the phone in his hand. It was horrble. The death was ruled accidental and then stinking Insurance company would not pay on the credit life insurance on the house loan because they said that was not an accident. Coroner ruled it an accident; It’s been a year but I so want to go after them. This was a wrongful death but no one in the dialysis clinic gave a damn about it, including his doctor. I will never forget how I found him. And he died alone too. This has been my worst nightmare.

      • Hi Pat. I’m very sorry to hear about your boyfriend. Yet another horrific death that should not have happened. I find it hard to believe that the people involved have been so callous and uncaring. There is definitely something wrong with the system. I hope you can keep up the pressure on the insurance company and the unit. There is only one way to improve things for others, and that is by making it so expensive that they cannot ignore these fistula problems. Let me know how you go. Regards, Greg

    • Hi Cynthia. I am very distressed to hear about your father – yet another death from a bleeding fistula. I have stopped counting the number of people have suffered because of what seems to be lack of basic care. I would be very angry too if it was my dad. Is there any way you can take action against the people involved? Greg

  11. My dad is 86, his creatinine level was between 4.5 and 6 for the last 2 years, however his output has been steady, for 2000 ml the output was around 1200 to1300 ml. He was having no appetite and seemed weak, hence his kidney doctor suggested 5 rounds of dialysis, his blood urea levels were in the 250’s, he just completed 3 cycles of 4 hour sessions of dialysis.
    After the 1st day there was slight bleeding from the fistula area as well as a little blood in his mouth. He had also passed some blood in the stools, he was given plasma.
    A 2nd dialysis was done in the evening, 2 pints of blood was also given.
    After the 3rd session, he seems to have bled gain from the insertion area.
    Please advise if this I normal or if I need to panic.
    Many thanks Ariza

    • Hi Ariza. It can often be quite a drama for the first few sessions, especially if your Dad has been weak and unwell. As we get older our skin gets thinner and more fragile. It can take a little time to get used to the needles and the dialysis process. While four hours is pretty standard, it can nevertheless quite draining.
      Your Dad must have been anaemic (not enough red blood cells), which is a side effect of kidney disease. Most kidney patients are given EPO or Aranesp to build up the blood. A transfusion is a quick way to do the same thing, but the medication will still be needed, as he is sure to become anaemic again without it.
      You should speak to his doctor about the blood in the stools. There may be other problems that need to be addressed.
      So, no need for panic, just be watchful and keep communicating with the dialysis staff and doctor. Regards, Greg

  12. My husband is 82 years old been on dialysis now for about a year. He has the button hole but lately the nurse has problem to insert the needle in one of the holes. Last treatment she said to my husband now for her to get into the hole she need to use the regular needle. Is this correct or is something going wrong? What should I do? Now I worry after I read all the cases and dramas of others.
    Anyway tomorrow I will stop at the dialysis center to address this matter to director of the center.
    Thanks in advance for your help. God bless you.

  13. Hi my name is angelica and I need soome one to help me figure out how and why my mom bleeds after she gets her dialysis

    • Hi Angelica. There can be several reasons for bleeding after dialysis. If your mom is getting on in years, her skin and blood vessels may have become weak and it takes longer for them to close up and begin their repair. Or it my be that she has had more anti-coagulant (Heparin) than she needs for the session, and he blood takes longer to form clots around the wounds. Either way, applying pressure for a longer time will stop the bleeding. If she is getting too much Heparin, the dialysis center staff should recognize the problem and reduce the dose.

      Is she still having bleeding trouble? Greg

  14. I thought I was the only one who had experienced this! My husband died at age 46 on 5/21/09 when his fistula ruptured. He had his for 13 years and it was always abnormally large. It was literally the size of a softball on his upper arm. His dialysis unit always kept a close eye on it. About a week before he died, they noticed the skin on his fistula looked taut and shiny. It also had what looked like blood blisters forming. They told him he needed to get it checked when he went to dialysis on Monday and he refused to go. At his next session on Wednesday night, the RN at dialysis told him that his fistula looked really bad and they wanted to send him to the ER in an ambulance. He refused to go but said he’d make a doctor appointment the next day. He called the doctor the next morning and made an appointment for 4:00 that day. Well, at 2:45 it ruptured. My sweet Bill died in minutes, right before my eyes, as I held a towel against his arm and called 911. The firehouse was 1/2 a mile down the street and they were there in 3 minutes but there was nothing they could do. The horror of that day will be with me always. I give his dialysis so much credit for trying to get him to the hospital is but he was just too darned stubborn and it killed him. My message to others is to not wait too long if there are any changes to your fistula. I understand that nobody wants to be in the hospital after spending hours every week hooked to a machine but please! Get to the hospital!

    RIP WAC 5/21/09

  15. Hi my husband’s fistula burst while trying to insert needles to dialyse, he went to surgery then ICU, its almost 1 month and a week. When ask what happens the nephrologist doesn’t give straight answers its like he suffered stroke, how she doesn’t know. Is there a way to take this matter up?

    • Hi Yvonne. Not being there it is hard to say how the burst happened. However, depending on age and general condition, some fistulas can become inflated, and weak and prone to rupture. Dialysis nurses and technicians should be watching fistulas constantly, and where there is a problem, they should arrange for it to be reviewed (using an ultrasound to check that the fistula is flowing well, has no weaknesses, etc) by a vascular surgeon, who will rebuild or relocate the fistula (eg on the other arm) to a make it safe.

      Fistula problems rarely happen overnight. There is usually plenty of warning signs, which should be noticed by staff. Sit down and talk with the unit manager and ask if they have protocols for ensuring that this kind of thing doesn’t happen. And ask why it did. If you don’t like the answers, think seriously about legal action. Sometimes this is the only way to get the quality of care your husband deserves. Good luck! Greg

  16. Hi, I’m a post transplant patient for 13 years now and I have had my fistula for over 15 years but I never realized how life threatening having one can be. I have not been on dialysis since my transplant. Over the years though, my fistula has kept growing a lot in size (about size of a small egg) right below my elbow. I would bring it up at doctor appointments but nothing was ever done and they never seemed too worried so I thought it must have been normal. I’ve noticed now there are a few small lumps forming up my are and there’s even one up near my neck. My arm sometimes gets really sore like today that sometimes it wakes me up from my sleep. I’m sitting here reading your blog and all these tragic stories and getting more worried. I’m 31 years old and in decent shape but been having problems controlling my blood pressure lately but should I still be concerned about this?

  17. my mom would like to prosecute a dialysis company for the wrongful death of her mentally ill brother.The dialysis company lied to the attorney general about everything.She wants justice for her brother.Have you any wise council to offer her?Rosemarie Robinsons phone;1.617.877.8777

    • Hi Rosemary. Without knowing anything about your uncle’s case, it is difficult to say anything other than the most general comments. But as with any legal argument, it will all come down to proof: anything in writing (unit medical notes, diary entries, bills, etc), photos, statements from other patients, second opinions, whatever. The first step is to gather whatever evidence you have and approach an experienced medical lawyer for an opinion. It is always worthwhile, because from what people have written in this blog, you are probably not Robinson Crusoe.

      I know it may be too late for you, but each time people write about lousy or dangerous healthcare, I always suggest that they start a diary and document poor practice and care, by taking as many photos when they are there, at the unit involved. This is a powerful first step in putting a case together.
      Good luck and keep us posted. Greg

  18. Hi, My Aunt is going through HD from last 3 years. 4 days ago we found her fistula was swelled and looking red, we took her to her surgeon who operated for fistula, So the Doctor said she will be fine and gave her medicine for 7 days. Now She is also suffering from Fever ? what could be the reason of fever ? fever was at 104 and now it is between 100-101 ?

    • Hi Abbas. It sounds like your mother’s fistula was both blocked and infected (swelling and looking red). The surgeon has probably cleared the blockage and the medicine is an antibiotic to help with the infection, which may take a week or two to clear up.

      From what you say, it sounds like your mother is in good hands. However, keep a close watch to make sure it does clear up and that her dialysis is going well. Keep informed. Talk to staff and maybe keep a diary of how she feels. Good luck!

  19. Reading all of these stories leaves me in tears. Just a week ago my fiancees fistula burst while he was sleeping. Earlier that day when he came home from treatment, he had blood and pus squirting out. I told him that he should go to the hospital, but he refused. Well, about 5 hours later, our daughter calls me and says, mom, dad said come and take him to the hospital because his arm is bleeding. I leave work to go home and as I am talking to them I told her to call 911 because I am about 10 to 15 minutes away from them. When I make it there the paramedics are getting ready to take him to the hospital. They stop the bleeding in the ambulance. Once we reach the hospital the bleeding stopped.

    Well, the next morning his arm was big as ever. They said, it was because of the tight bandage. Well, he had surgery later on that day. During, his surgery the doctor said, that the bleed started gushing out, he lost about a liter of blood and they almost lost him doing surgery. He pulled through. He has a catheter in his neck, which is about to be replaced with one inside of the neck until his arm goes down and they give him another fistula.

    The doctor said, that they are not in a hurry to start the process on the new one until his arm heals and they want to make sure that all of the infection is gone. I was a nervous wreck because I did not know that this type of stuff could happen. My fiancee is very stubborn and hard headed. Why I do not know, but he just does not like going to the doctor or hospital. After, this near death experience I notice a little change in him, he makes sure that he is doing his follow ups, taking his medicine, and giving any suggestions from his doctor a chance.

    Our daughter said, she was so traumatized after what happened, that she would not leave him alone in the house. He just started back to going out side. We are happy about this, because all he was doing for the first 4 days was sleeping all day and up all night. We’ll be happy once the swelling goes away. I guess it is going to take more time than we expected. This has really been a scary situation for us since day one that he started treatment and that has been about 12 years. He is still thinking about getting on the transplant list. I thought that he was on the list, but to find out that he never signed up.

  20. its too late…..i,ve lost my father already…i just read your article about fistula…i ve should read this article earlier…im in deep sorrow right now..he just passed away….

  21. Hi,

    My Father is 71 years old and not able to take dialysis as the doctor says it gets blocks. Any idea how this problem gets resolved. Please share… Also can he go for kidney transplantation at this age…
    Thanks in advance

    • Hi Salma. Fistula blockages a can be caused by several things: like a blood clot, an aneurism or a kink in his fistula. Blockages limit the speed of the blood pump to a point where he cannot be adequately dialysed. His doctor should refer him to a vascular surgeon, for a fistulagram and angioplasty (see here for details).

      Age is not as important as fitness. If your father is healthy he can be a candidate for a transplant.
      Greg

  22. I’m sitting in Pre-OP, next to my husband who’s been free from dialysis for almost ten years now, due to a transplant. His fistula became blocked and surgery its being performed to clear it. Very sound advice you have written here. My husband and I both take time out of our day to inspect his fistula, to avoid the very situations you describe. We hope he never needs it again, but the daily care, still continues after transplant.

  23. Hi BigD, I left a comment about using pure Vitamin oil to thicken the skin and forgot to mention that it was Vitamin E. Incidentally it is very sticky and a bit of a nuisance to put on, but very worthwhile Dirk de Rooy

  24. my brother was put on dialisis. he has had two treatments so far. his fiscula isnt ready so they went in the jugular vein by neck. when they put him on the machine the alarm sounds…the port for dialisus was done right before dualisis. the first time he had excessive bleeding… but both times they had to change the hoses where the red was transfered to blue and the blue to red. then the machines alarm would not go off. i am assuming the pirt was put in backwards. whst damaging is being done before they switch hoses. please respond asap.

    he has another one thursday

  25. Reading all these stories has made me cry and im scared to death. I have to start dialysis. My heart goes out to everyone. Im seriously considering hospice now. .

  26. Hi my mother died about 4 to6 hours after leaving dialysis she had I think you call it a Shinto in her leg the thing where the care providers gain access. She died from that it burst and she bled to death but the autopsy report states natural cause should I take legal action if so where do I start it happened Oct.7,2013 if you have any information that might help jayojayo62@gmail.com thanks contact me if you have any information

    • Hi Joshua. Sorry to hear about your mother. It seems that someone puts up a post here about a loved one bleeding to death from a ruptured fistula or shunt once or twice a year. The problem is usually that the fistula wall is weak and fragile. A burst of high blood pressure or a physical blow to it can do the damage. In well run dialysis units, where staff are aware and understand the danger, ruptures rarely happen; they refer the patient to a vascular surgeon to reconstruct or relocate the fistula. If staff ignore the problem, the fistula can rupture. Simple as that. Staff inaction can contribute to the rupture. But it is difficult to prove unless you have detailed documentation and ideally photos of the fistula at the time.
      Sorry I can’t be of more help. regards, Greg

  27. I have a AV graft put in but on 07/01/2014 and it clotted right away. Now I am experiencing pain underneath the arm where the graft is. Every time I ask my doctor about the pain he just blows it off as it is still healing. I talked to my primary doctor and she states it sounds like it is Arthritis. I asked the doctor to have it removed due to I was worried that the clot my move. He keeps stating that nothing will happen. Do you think I should seek a second opinion for someone else. Reading all the above stories really have me scared like something can really happen. Thanks in advance for any knowledge that you give.

    • Hi Vera. Your AV graft should not be painful. It should also be reasonably well healed by now if it was put in last July, so “still healing” doesn’t sound right. Also, if the graft is along your forearm, that is not a common area for arthritis (wrist, fingers, elbow yes, but forearm? no).
      AV grafts are more prone to infection and clotting than fistulas. That would seem to me to be the first thing to check. Ask your doctor or the unit staff to test for infection (a blood test). That can usually be treated with antibiotics.
      Also, how well is the graft working? Are the blood pump speeds good? If not, it may be clotted, and the clots need to be removed (usually in a hospital under a local anesthetic).
      Unless the graft wall is weak and fragile, or the needle holes are weepy and bleeding is hard to stop, it is unlikely to rupture.
      But if, like now, you are not sure about the advice you are getting, definitely, definitely, get a second opinion.
      Good luck, Greg

  28. My son was on dialysis for approx. 8 years.
    He had complained on numerous occasions that the site where the fistula is was very painful when he had dialysis. The last time he had his dialysis, he was told if he didn’t get the fistula fixed, he shouldn’t return to dialysis. He was referred to a vascular doctor who did a decotting procedure.
    Five or six- days later he was in excruciating pain, arm swollen. He went to the ER where he was told they couldn’t help him. He went home. Later that day the fistula ruptured and he bled to death.
    He has had many fistula repairs. This should not have happened. The fistula was needed to be replaced and moved to another site.
    He was in his early 40’s, had a donor and was about to finish his assessment to prepare for his transplant.
    The autopsy report stated he died from infeected fisula. Now who is responsible for not doing their job and why did this happen? Should this have happened?
    I know this is carelessness, recklessness, and irresponsible behavior on the doctor at the dialysis center.

  29. My 40 yr son was found on his bathroom floor bled to death from a ruptured and infected fistula, 4 days after a declot procedure. He was trying to tie his tee shirt around his left arm to stop the bleeding. He had a declot procedure done on the 11/28/14. The vascular dr who performed the procedure contacted my son’s nephrologist at the dialysis center and informed him of the condition of his fistula and that he needed to have it taken care immediately.
    My son was discharged home to die. The vascular dr should have called the ambulance and sent him to the hospital for immediate surgery. This is a situation you do not put off. This is life and death.
    To add insult to injury. The nephrologist wanted no autopsy and to allow him to write the death certificate. I’m now wondering what he planned to write on the death certificate “RENAL FAILURE or CHF.
    The police found him dead on his bathroom floor, for crying out loud. Mr D where do we go from here. He has small children who need answers.
    Some dr do not listen attentively to their patients. Whats my next step for the sake of my grandchildren.

    • Hi Marlene. Wow. From what you say, this seems to have been an entirely avoidable tragedy. The normal course of events should have been that once there was a problem with the fistula, the unit/doctor at the unit should have tested for infection (a simple blood test) and if that was the problem, started him on antibiotics. If it was not infected, but there was still a problem, the hospital or the unit should have referred your son to a vascular specialist for review and declotting or, if it was weak and fragile, to be relocated.

      Fistula problems rarely happen overnight. There are usually plenty of warning signs, which should be noticed by unit staff. Sit down and talk with the unit manager or the person in charge. Ask if they have protocols for this kind of thing and find out what went wrong.

      Sadly, I seem to be saying this a lot. With a couple of exceptions, all the ruptures reported here seem to happen to people who live in the USA. Why? It seems to be a fundamental problem. In most first world countries, the primary driver in the health system is the patient. Sadly for ordinary people, in the US, the no. 1 priority seems to be money. What a health system.

      If you are not satisfied, make some noise and get some action. If something doesn’t change, what happened to your son will happen again. If you can’t get satisfaction, or you don’t like the answers you get, gather together as much information as you can and find a good lawyer. In this environment, where you can’t rely on goodwill and professionalism, the only recourse may be legal action.

  30. My daughter’s port fell out they put another one in Saturday the 25th 2015 took her to the hospital one week after they put the new port in they said that she is very sick and she have and infection she died on the 27th 2015 I want answers I don’t understand my baby was 23 years of age why didn’t they know about the infection at dialysis I need an answer what do I do

    • Hi Juana. What a terrible thing to happen. Infections don’t happen overnight, they take days and sometimes weeks to become a serious problem. I too don’t understand why the dialysis unit staff didn’t do anything about it. At the least she should have been referred to her doctor and as the infection got worse, to her kidney hospital.

      Go to the dialysis unit and talk to the senior manager (make a formal appointment ON THE RECORD) and ask for answers. Did the staff record that she was unwell in her care record? What is the usual protocol for infection? Was it followed? What action did they take? Why wasn’t she referred? Do the same at the hospital. Take notes.

      This is happening way too much! Is is just too hard to provide proper care? Or is it too expensive? If you don’t think her care was good enough find a lawyer and talk through your options. Make some noise and get the answers you need. Maybe what you do will save someone else next time (sadly, especially in the US, there always seems to be a next time). Greg

  31. Pingback: e-Patients: being our own guardian angel | Big D and Me

  32. For those that are experiencing dry taut or brittle skin at their needling site(s) I’ve had great success correcting this issue with a product called Aquaphor made by Eucerin. Hope this helps. I’ve heard about vitamin e working also as some have mentioned but it is very messy and prevents tape from sticking. That was just my experience.

  33. Hi
    I’ve been having HeamoDialysis since Aug 2014. I have not had a fistula operation yet and still have a ‘line’, in my chest.
    I’m extremely concerned by the fact, I have collapsed veins. Even a simple cannula, becomes a traumatic experience.
    I need to know, whether a fistula will work with collapsed veins?
    I have voiced my concerns to my Nephrologists, but the answers have been somewhat evasive.
    Could you please let me know of any case experiences, or please direct me to someone who could answer my concerns and feelings of trepidation.

    Thanking you, I await your reply eagerly.

    Rizwan UK 45yrs

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

  35. My mother had her fistula burst open in the middle of the night last night, but thankfully she was able to call me and I got there in time to help stop the bleeding. Just like a lot of others have said, it looked like a crime scene in the house. A total nightmare. She must have lost about a quart and half of blood last night, but since I managed to get the bleeding to stop, and get it bandaged up tightly, I figured she didn’t really need to go to the hospital (after reading through your webpage/site and the comments I now know better!). This morning I went to check on the bandage, and I barely got the tape off of her arm when blood spurted across the room. Again, we grabbed towels which got quickly soaked, and I quickly called for an ambulance. She’s at the hospital now, and I hope they can take care of this properly so she doesn’t die when the scab comes off! The comments on this page are all so scary and sad, I feel for all of you. I also looked at the Buttonholing images, and it’s no wonder people bleed out when their fistulas are so decimated by constant puncturing! My mom is only 67, and she has been telling me for a couple of months how hard it is for them to stop the bleeding after a session- with what I know now, I can’t believe they haven’t recommended she see the surgeon yet for this! Plus, she’s been complaining this week about her fistula hurting. But she always says how great and caring they are at dialysis….too bad they are apparently inept as well.

  36. I went on dialysis June 2012. It was horrible; my legs cramped from the ankle to the thigh and the cramps would jump to the other leg. Well, the cramps settled down. In the reclining chair, I now keep my legs down and they only go up in the chair if my blood pressure goes very low. Last Tuesday, things did go wrong; first of all RN nurse came in at 07:30 am and we all were there at 06:00 am. Well, the techs said we could get off at our regular time which for me would be 09:45 am. Well, I looked at the clock and it said 09:15 am and I thought to myself, only 30 more minutes and I am out of here. Next thing I know, I felt sick and dizzy and told the lady sitting beside me (she was caretaker for her boyfriend) She told me she looked at my machine to see if the blood pressure was low and it was not, so she went to the other side of the room to tell them I needed help. Next thing I knew, I was so dizzy and sick, I started yelling help. The lady told me later on that my eyes rolled back in my head. Next thing I knew, all these people were around me, techs and RN nurse. The RN called the fire department and ambulance. I started feeling better. I was put on a stretcher and I saw all the blood and the hospital checked me out and let me go and then I saw all the blood on the sheets at the hospital and blood was all over my behind. Now I am frightened, after reading this stuff. I felt I could have died last Tuesday, July 14, 2015.

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