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.

Dialysis during a power outage, what to do, what to expect

We had a big storm here last Thursday. For the last few days, it has been tropically humid (very unusual for Melbourne) and on Thursday, down it came. I arrived at the BigD unit just as the downpour started and I thought I would wait it out. 15 minutes later, I decided to run for it. As a result, I arrived dripping wet from head to foot. For the first time in many years, I dialysed in a classy paper gown, delighting one and all.

About an hour later the thunder and lightning kicked in. It’s always enjoyable to be inside during a storm, feeling safe and protected from the elements. But this time, not quite: bang! A complete blackout. No lighting, no power to the machines, computers, telephones, coffee urn or ice maker. Luckily, it wasn’t yet completely dark, so we could see ok. All machines began alarming, creating a real din, but they also kept running (each has battery backup, which can last between 5 and 15 minutes).

This happens rarely, but it is good to know that there is a safe and simple procedure that your unit will follow when a blackout does occur, so here is a quick overview.

Our unit is quite small, just 8 machines, and all were in use. At any one time each machine has about 250 mls of our blood flowing through the lines. While the loss of that amount of blood is not life threatening, it is also not healthy: it reduces the body’s oxygen-processing capacity and lowers the haemoglobin, which can cause weakness and dizziness at varying levels of severity. Also, it takes at least a few weeks for the body to build the blood volume back up to where it should be.

The only time anyone should lose that much blood on BigD is during an emergency (eg a fire), where it is standard operating procedure to clamp and cut the lines and leave as quickly as possible. (Most units conduct emergency drills twice a year, but without cutting the lines.)

So there we were, everyone connected to a machine and all machines running on battery power. We were alert, but not alarmed – yet.

At this point the unit staff had several options.

1. Assume the power will come back on within a few minutes and do nothing. If it does, this turns out to be a good option. If it doesn’t, all is not lost: for extreme situations, eg where the batteries fail, each machine also has a hand crank, which can be operated either by staff or the patient, to pump the blood around the lines and back into each patient. (I have done this once. It is slow, but effective.)
2. Assume the power will come back on within 30-40 minutes, run each patient back under battery power¸ ask them to wait until it comes back on, and when it does, reconnect them and continue the run.
3. Assume the power will remain off, run each patient back under battery power and send them home, with a (bonus?) reduced treatment time

The option to choose depends on the history of outages in the area and how easy-going or otherwise the patients are.

In our area, blackouts are relatively rare, and often momentary, so the staff chose option 1. It was a good choice. About five minutes later, the power returned, and dialysis continued without a break.

From us patient’s viewpoint, we had a burst of excitement followed by a frisson of potential danger, a short wait, then back to normal.

Power outages are a routine, planned for part of BigD. The worst outcome is that your run will be cut short. So follow staff directions and relax.

Note: If your unit is part of a hospital (ours is a stand-alone unit), in addition to the battery backup in each machine, your unit may have an Uninterrupted Power Supply (UPS) or generator backup, or both. This could extend the available power by several hours or even days. If this is the case, an outage would have little if any impact on your dialysis.

Do you have power outages in your area? Do you do anything different?

Improving Dialysis – Fistula Efficiency: Plan B

Time to look at my fistula again. It’s only about 6 weeks since my last fistulagram and ballooning, and while the efficiency improved initially, it has gradually fallen again. So time for Plan B.

Plan B is another fistulagram, this time to be completed by a vascular surgeon rather than a radiologist. If  he finds a stenosis (a narrowing or choke point) in the fistula he operates under a local anaesthetic (which is how the initial one was created 14 short years ago).

There are several ways he can fix it:

1. Expand the anastomosis (vein – artery join) to absorb the stenosis,

2. Create a  new, vein-to-vein anastomosis (merging a narrow bit into a fat bit of the same vein) to remove the narrowing,

3. Patch the vein,

4. Shorten the vein, or

5. Insert an artificial tube (graft).

Since the procedure involves only a short segment of vein, the fistula can be used pretty well straight after the operation (keeping clear of the new work until it has healed).

My fistula, ready for Plan B

Warning: self diagnosis following: I think that the stenosis is very close to the anastomosis, so it is likely he’ll do no. 1, expand the anastomosis to absorb the narrowing (see pic).

So, let’s see what happens on Friday.

In the interim, I have been trying to improve the efficiency of my BigD sessions by placing the needles as far as possible from each other to reduce the possibility of recirculation. To do this, I have revived an old venous needle entry site on my bicep, which is about 15 cm (6 in) from my usual venous needle site. It seems to be working, but it is less comfortable and I’m looking forward to the return of ‘old reliable’ next week.

I’ll let you know how it goes.