The patient and carer trained, what about the doctor?

Here we are, just a couple of weeks after posting the Fistula Health training program, and Daquon writes this:

Hi Greg. My mom is 42 she been on dialysis for 5 years. Recently her fistula had been getting big and the Dr. at dialysis told her she should be careful because it was thin and she could bleed to death. From me reading your responses on everyone else, they are supposed to fix her fistula when they noticed it was swelling up.

But lo and behold they didn’t, and a week later she woke up and blood was squirting out her arm. I call ambulance, they took her to the hospital. She got surgery done on her arm but she came home yesterday and she told me she had to change the bandage twice a day and when I help her take the bandage off it was a big hole in her arm leaking blood to the white meat. We had to stuff the hole with bandages and wrap it back up.

When I send this, tears come to my eyes. I just want some information on what’s going on and is she going to be alright. the only thing she told me is that it was infected.

Wow. Daquon’s mother was a classic candidate for a fistula rupture: swollen, thin walled and infected, and what happens? The doctor both recognises and acknowledges the life-threatening problem, then he tells her to be careful and walks away.

This the very person, the saviour, the white knight expected to act, to fix the problem!

Of course the fistula ruptures. Luckily Daquon is there to help. He acted quickly to stop the bleeding and called an ambulance. The patient/carer training worked just fine.

When we go to dialysis,  we assume that each party in the circle of dialysis care will actually do their job. I think that mostly this is a fair assumption. Mostly.

But the best way to be sure of that is to make a very public fuss – even a legal fuss – when they don’t. Sometimes the only motivation to improve care is financial. So I have sent Daquon the details of a lawyer who is working on a US fistula rupture negligence case right now.

At the very least he should see the dialysis unit manager and make a formal complaint about the doctor’s lack of action. He should also ask to see his mother’s care record to see what has been documented and what care has been recommended. In many cases, this material is hard to get because the dialysis unit owners don’t want to admit liability. -“It was nobody’s fault- it happens” just doesn’t cut it. The blame for this kind of inaction can and should be laid at the door of the dialysis unit and poor training of staff.

In many cases, this material is hard to get because the dialysis unit owners don’t want to admit liability. -“It was nobody’s fault- it happens” just doesn’t cut it. The blame for this kind of inaction can and should be laid at the door of the dialysis unit and poor training of staff.

It is hard to say what was done at Emergency, but his mother clearly needs to see a vascular surgeon to have her fistula fixed properly. So Daquon should also ask for an immediate referral. Hopefully the surgeon will do more than just tell her to be careful.

Fistula Rupture Health Education Package Now Available

This week the Fistula Health Education for Patients package, developed by Julie Tondello at Diaverum and me is now available for anyone on dialysis.

The Package has been prepared for use on a one-on-one basis by dialysis unit nursing staff, educating patients.

Dialysis Unit staff

  1. Print out the two-page education sheet and keep it handy for reference during each education session
  2. Print two color copies of the poster:
    1. One on an A3 or similar sized page
    2. One on an A4 or letter sized page.
  3. Laminate both posters
  4. Attach the large poster to the unit noticeboard so that all patients can see it

Schedule brief (5-10 minute) education session with all patients. Use the Education sheet and the A4/Letter sized poster during each session.

Individual patients

This material can also be used in a self-learning mode directly by patients. Just print out the two-page education sheet and the poster. Then put aside some time to read the sheet and work through the poster.

This education has been provided for use globally via the Diaverum network and the BigDandMe blog for unrestricted download and use under a creative commons (no fee) licence.

Fistula Health Education for Patients package

Fistula Health Education Poster for Patients

 

Training really can stop people from dying from fistula bleeds

You may recall that in April last year, Julie Tondello (from Diaverum in Greensborough) and I developed a Fistula Safety training course and poster for dialysis patients. The main aim of this 10-minute course was to keep people safe from fistula ruptures and bleeds, both by knowing what to look out for to prevent it from happening and by Pressing and Lifting to stop the bleeding if it happened.

Julie ran the training as a one-on-one session for all patients at Greensborough and North Melbourne dialysis units. Surveys before and after indicated that it was universally well-received and effective.

But as always, the proof of the pudding is in the eating.

Peter

Peter, 70, has been on dialysis at Diaverum Diamond Valley for about 8 years, and over the last year, learned that he had contracted cancer. This led to a series of treatments, including chemotherapy.  Last month, he noticed a rash on both arms, which he (rightly) attributed to the chemo. His doctor recommended a cream rub, which he diligently applied to each arm, including before dialysis.

The trouble was that the cream made his skin a little slippery, and an hour into the run, the tape holding the arterial needle in place lifted off completely and his arterial blood hosed a couple of metres into the room. He immediately remembered his fistula safety training, pressed down on the needle hole with his finger and raised his arm. He stopped the bleeding, called for help. No panic, no drama.

Lilliana

Lilliana, 62, has been on dialysis for 14 years, eight of those at Diaverum North Melbourne. Over the last month or so, one particular needle hole in her fistula developed a scab that did not seem to be healing. While there was no sign of infection, nursing staff avoided it and chose other sites to puncture when needling. One morning two weeks ago, while Lilliana was at home, the scab came off and the fistula began to bleed profusely.

Again, like Peter, Lilliana remembered her training: she pressed with her finger and raised her arm above her heart to stop the bleeding, and called for help. She knew what to do, and she did it. No panic, no frantic search for a tourniquet or something to staunch the blood flow. Just quick, effective action. The ambulance arrived, she was taken to hospital where the wound was treated.

Over the next few days it showed signs of recovering.

 

1-north-melb-bleed-2

Lilliana’s fistula after the bleeding stopped

However, though the scab appeared to be healing, last week it came off again, while Lilliana was on dialysis. Blood burst out and sprayed everywhere. Once she realised what was happening, she again pressed her finger on it, raised her arm and called for help. The unit’s doctor quickly took over (see pic). Again, she went to hospital, but this time for a complete fistula rework.

 

It will take a few weeks for the fistula to recover, but it will, and in the interim, she will dialyse using a single needle.

The training works!

I must say, when we heard about how well both Peter and Lilliana responded to their fistula bleeds, everyone associated with the training were thrilled and delighted. Their prompt action diffused what could have been major, possibly life-threatening situations.

At the beginning of this project, our first surveys showed that almost no patient knew that a fistula could rupture or bleed out, and 90 per cent did not know what to do if it did happen.Post-training surveys indicated that over 90 per cent of patients now knew what to do. But seeing them put their training into action so confidently and effectively is concrete evidence that the training works.

Post-training surveys indicated that over 90 per cent of patients now know what to do. But seeing them put their training into action so confidently and effectively is concrete evidence that the training works.

We are making headway! In our own small circle, yes, but headway nonetheless. And having proven the effectiveness of the training, the next step is to release it for patients everywhere.

So watch this space. The training program will be available online over the next month or so, for any unit or anyone to download, print and use.

And, with luck, we will see what we have all been looking for for so long: as the training spreads, fewer and fewer people dying from fistula ruptures and bleed outs.

 

Skin too thin for a fistula?

John emailed me today:
Hello Greg,

800px-Schema_fistule_arterio-veineuse_-_AV_fistulaI found your Big D and Me blog when Googling “fistula thin skin”. Thank you for the thoughtful blogging about dialysis and your compassionate spirit reflected in your posts. If you don’t mind, I’m writing to ask your advice or for some of your knowledge. If you wish, I can re-post this on your blog site and you can reply there if you want this thread available to all.

My 81-year-old mom has been on dialysis for 5 years in Memphis, Tennessee, USA. She began dialysis soon after heart surgery. To begin dialysis, she went through the usual process of a Permacath while building/growing a fistula in her left arm. The fistula performed well until last Spring when her fistula burst and haemorrhaged twice, each of which nearly killed her. The vascular surgeon opened the fistula site to rebuild but said the fistula was heavily ulcerated and unusable. (I suspect poor care of the fistula over time by medical staff, but that is in the past.)

We had an appointment with the vascular surgeon for her to have a vein mapping done in her other arm for a possible new fistula, but the port, which she had put in after the fistula burst, became infected and she became septic. She was taken to the hospital to have the infection treated with IV antibiotics, so she missed the vein mapping appointment. While in the hospital, the cardiologist and nephrologist said she was not a candidate for a new fistula because her skin is too thin and fragile.

While I believe it is certainly possible that her skin could be too fragile, it’s odd to me that the vascular surgeon, who examined the arm just a couple of weeks earlier, seemed encouraging about the possibility of a new fistula. (It’s hard to know who’s opinion to trust more. I value the cardiologist’s opinion least because he doesn’t deal with the mechanical aspects of a fistula and dialysis scenarios as much.)

Without a fistula, of course, a Permacath is the only other option, which I believe will likely become infected with time.

Question: Have you heard, in your experience, of age and/or skin condition being a factor in evaluating a fistula site, and then completely ruling out the possibility of a fistula?

If a port is going to be her only option, can you offer advice about avoiding infection and catching it early if it happens? (My understanding is that a port is always removed when there is an infection because a foreign body can harbor bacteria. Of course, infection and port removal mean yet more hospital stays and procedures.)

Part of the picture here is my mom’s quality of life. She is very sharp mentally and was walking on her walker a few weeks ago. I believe she could continue with a significant quality of life if she could remain infection free and dialysing regularly without incident. But, with event after event (haemorrhages and infections), she has expressed an unwillingness to tolerate that for long, and I would not blame her.

Thanks for any advice or knowledge you may offer.

My initial response:

Hi John.  Thanks for your email.

I’m sorry to hear about your mother. It is an awful time for both of you.  Give me a couple of days to think and to ask around.  I’ll come back to you soon.

In the meantime, I’ll put up your question as a new post, so that others may help too.

Update:  We’ve had some great responses:

  • Henning, as usual, told it as it is:

….Hello Greg and John,

Unfortunately, the cardiologist and nephrologist are probably right. You do need a certain level of tissue above the fistula for it not to create trouble. On the other hand, I can’t be too deep either. The more shallow the fistula, the greater the risk of haemorrhage. (see the rest in his comment below)

  • Julie Tondello gave us the clinician’s viewpoint:

Hi Greg,

In our experience, the viability of creating a new fistula would generally be established through vein mapping and reviewed by a vascular surgeon and care by a vascular access nurse.

Many dialysis patients are in their 80’s and even 90’s have very fragile skin.

Avoiding infection of a perm cath needs to be the responsibility of nursing/ medical staff and the patient themselves. The incidence of infection will vary from clinic to clinic but a good clinic should have zero infections. Be scrupulous with hygiene is paramount. Many clinics use the principles of Aseptic Non-Touch Technique (ANTT) through the procedure of connection, disconnection and dressing changes.

Small measures but important, patient and nurse wear a mask when connecting/ disconnecting/dressing. Look for early signs of infection, inflammation, temperature, rigors. Change dressing weekly unless dressing compromised. Advise patient not to get permcath wet in shower or pool.

I hope this is of some help.

Regards, Julie

  • In another comment dynamicdialysis (below) suggested seeing a vascular surgeon vascular surgeon, and that fistulas  can be made in the leg.

Many thanks to all so far!

 

Preventing Fistula Ruptures: training course for patients

DV Poster 99DesI have just returned from the Renal Society of Australia’s annual conference, held on June 20 t0 22 this year at the Gold Coast, Queensland.  The conference is for renal professionals, nurses, clinicians, doctors and consultants. I went along because I was a co-author on one of the presentations.

The other author and presenter was Julie Tondello, a renal Associate Nurse Unit Manager at my Diaverum dialysis clinic in Diamond Valley, Victoria. The paper was called “Can your fistula rupture?” and was triggered by the ongoing posts, comments and queries about fistula rupture deaths on this blog. (more…)

e-Patients: being our own guardian angel

1-IMG_1532I am now in week 5 of the eHealth MOOC I wrote about in my last post.

It has been a revelation.

The most eye-opening subject was covered in week 3: eHealth for patients and citizens: all about e-patients.

Before we go further, meet e-patient Dave deBronkhart.  His story cuts to the chase: it saves me writing and it saves you reading.  It only runs for 16 minutes, and its great! (more…)

Dialysis needling: if at first…

 

Buttonholes

Buttonholes!

Josie (not her real name) emailed me recently about a problem she had getting one of her needles in:

 

Hi Greg

I hope you don’t mind me getting in touch. My name is Josie, I live in the UK and started home haemo a few months ago. I have had a problem with my fistula tonight and because it is Friday night here I can’t get hold of any of the nurses from my training unit, and having followed your blog I thought I could seek your advice… as I say, I hope you don’t mind me doing so. (more…)

Dialysis, Boiling Frogs and Fistulagrams

FrogWith all things BigD, I don’t like surprises.  Yet they still arrive, even when I think things are going well.  It can be a lot like the story of the boiled frog.

Put a frog into a pot of boiling water, it will leap out straight away to escape the danger.  But, if you put a frog in a pot that is filled with water that is cool and pleasant, and then you gradually heat the kettle until it starts boiling, the frog will not become aware of the threat until it is too late. (more…)

Healthy on Dialysis for 32 Years (and more to come!)

Kevin Collins emailed me the other day, to follow up on my post about the Nocturnal Dialysis service being offered by the Diaverum Dialysis Unit at North Melbourne.  In it I said that nocturnal dialysis started in Australia in Geelong in the late ‘90s.  But no! There was much work done and quite a story before that.  A story that is well worth sharing.

Kevin is a very interesting guy.  He was born in 1963 with Alport Syndrome, a genetic disorder which results in end-stage kidney disease and hearing and vision difficulties.  His kidneys started failing when he was 3.5 years old, (more…)

Dialysis: the need for (pump) speed!

Manny (not his real name) started BigD about two months ago.  And contrary to common experience, he feels just as lousy as when he started: weak, tired, generally unwell and incapable of doing much at all.  These are classic symptoms of insufficient dialysis, where not enough toxins are being removed by the membrane filter.

Why?  Like all new BigD members, his fistula was soft and fragile and initially couldn’t handle blood pump speeds higher than about 200 milliLitres per minute (mL/min).  But rather than his fistula gradually maturing over time to become capable of faster blood flows, it had some kind of blockage (maybe it was clotted or had a narrowing that impeded the blood flow).  So staff couldn’t get the blood pump speed past the 200 mL/min mark, which is not really enough dialysis to make a difference. (more…)