My Fistula, My Friend

Artery - vein fistulaI’ve had my fistula since 1995. It started out as a 5cm (2in) red scar, where the surgeon had opened my right forearm just above my wrist and joined my proximal radial artery (that runs down most of my arm to feed fresh blood to my hand) to my cephalic vein (which runs from my hand up the topside of my arm carrying used blood back to my heart).

At first, there was not that much else to see. The high-pressure blood from the artery made the vein stand out slightly above the flesh of my forearm, but no one would notice it and it was sort of normal.

BruitnpicExcept for the thrill, and the bruit: the feel and the sound of the turbulence created as blood from the artery gushes into the vein at the join (the anastomosis). The gush happens each time my heart beats, say, 55 times a minute. The thrill is the heightened tickly pulse I feel when I put my finger onto that join; the bruit is the slow-march drumbeat that pounds relentlessly when I press my fistula to my ear. Both were very primal, raw reminders that my life had changed forever.

Part of me naturally designed for lifting and carrying, cuddling and elbow-bending became the most unnatural of things: a dialysis needle gateway.

My poemAnd it has served me well so far, enduring the business end of over ten thousand 15 gauge needles, firstly stabbing a new hole each time, and later, using the same (button)holes. Buttonholing has helped reduce the tear and wear, but it has still grown and evolved into the sinewy forearm snake it is today.

And despite the occasional, blatant, What the … is THAT? look I get from strangers, it is my friend. If it had a name, it would probably be Ralph. Ralph was my best mate when we were young. He was a poet: smart, conflicted, loyal, explosive and high maintenance. I think of my fistula as a poem written in blood, with many of the same features. It tells my story – who I am and how I got here. So I cherish it, guard it closely, exercise it and service it regularly with vitamin E and TLC.

But a fistula, no matter how poetic, is not natural and will not be taken for granted.

In the early days, accidental or incompetent needling painted my arm with the Fistula Bruisers team colours – black, blue and yellow. An occasional fall where I thought I’d burst my fistula scared the hell out of me and Julie; but thankfully, a healthy fistula is a robust body part. The odd wandering buttonhole tunnel needed a new entry point; sometimes roadblocks needed various clean-outs and rebores to change the flow path.

And each episode inscribes a new verse on the poem.

carpal-tunnel1In 2010 my right (fistula) hand started to misbehave: it was weak and clumsy, my fingers and thumb were numb, with pins and needles and pain at night. I asked around and the universal answer was carpal tunnel syndrome. The carpal tunnel is an actual small tunnel, at the base of my wrist, that carries the nerve that gives sensation to my thumb and most fingers, and tendons from my forearm. Any swelling around the tunnel puts pressure on this nerve and stops it working. Carpal tunnel syndrome is very common in people with long-term fistulas, where the fistula grows bigger and generally causes swelling and compression on the nerve.

The solution is to cut into the tendons that form the tunnel and release the pressure. I had it done that year, and it worked a treat: I was once again able to do up my left cuff button in a flash. And I had a new 2cm scar at the base of my hand, mini-matching the fistula scar on my forearm to boot.

That was seven years ago. Just recently, the symptoms have returned. I went back to the carpal tunnel surgeon, who was sceptical. Carpal tunnel syndrome rarely comes back, so he arranged an MRI. Result: a new syndrome. The symptoms were caused by ischemia (not enough blood flow) in the hand; most likely from Dialysis-Associated Steal Syndrome.

Numbness and painSteal syndrome is where the blood normally destined for my hand is ‘stolen’ by my enlarged fistula. This happens in about 1% of fistulas (old and new). It can be fairly mild, like mine, all the way to complete loss of fingertip circulation and gangrene.

There are several treatments available, including reducing the flow by wrapping a band around the fistula vein, removing a portion of the vein, or moving the join between the artery and the vein further up the arm. All involve fairly complex vascular surgery.

That’s the state of play today. My 22-year old fistula is strong, healthy and just a bit of a drama queen.

I’m not sure how things will work out. I’ll start with visits to my nephrologist and the vascular surgeon who did the last service. Then decision time: perhaps once more around the surgery dance floor, perhaps I’ll just live with a clumsy hand.

Either way, I expect some new lines in my poem anytime soon.

Situation normal.

 

 

Driving Under the Influence of Dialysis

People around Australia were shocked when four-year-old Brax Kyle, who was walking hand-in-hand with his father, was struck and killed by an out-of-control car in a medical centre carpark at Berwick, in Melbourne’s south-eastern suburbs.

Detective Sergeant Mark Amos said the four-wheel-drive careened over a median strip into the carpark of the Epworth Medical Centre. “As he was negotiating a left-hand bend, the driver for some reason failed to take the bend,” he said.

The second shock came when it became clear that the driver was a 56-year-old man who had reportedly been returning home after dialysis treatment.

The Twittersphere lit up following this revelation, (more…)

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. (more…)

A September medical adventure on dialysis

For the last couple of years, I’ve been unusually healthy: no major dramas or hospital admissions; not many infections, colds or the like. And I was pretty healthy for our Lisbon trip.

This kind of peace and quiet can lull you into a false sense of security, where you start to think that health might just be the norm. But sadly, all of us BigD-ers need some pretty fancy footwork and a good dose of luck to stay healthy.  Or at the very least, we need to keep thinking and not make dumb decisions.

I stopped thinking and fell into my unexpected medical adventure on the 13th, around an hour into my dialysis run. I went into AF (irregular heartbeat) and my pulse got faster and faster. I was short of breath and had waves of chest pain; I thought my chest was going to explode. (more…)

Quick read: How to slow/stop your fistula bleeding

1-Snapshot_0-001The key to slowing or stopping your fistula from bleeding (whether it’s after a needle has been removed or (God forbid) a rupture) is to understand why it spurts in the first place.

Our fistulas are created by connecting a high-pressure artery, full of oxygenated blood coming at a great rate from our heart, to a vein, which is usually returning de-oxygenated blood at a leisurely rate (about 80 mL/min) from our body back to our heart (more…)

Speaking of dialysis…

1-IMG_1532As I hoped, here is the video of my speech to the Diaverum Annual Conference at Cascais, Portugal, last month.  It was called: The View from the Chair, a Patient’s Perspective.

It covers a bit of ground, but the highlights (apart from the joke at the start!) are: (more…)

Off to the Diaverum Global Dialysis Conference

I’ve been missing in action for the last few weeks, for a couple of reasons.

Josie & Liam Firstly, our No.2 Son just married his lovely fiancé here in sunny Melbourne (on the beach at Elwood).  It was a great wedding, but they live in London, so Julie and I have been pretty busy preparing. Not much time for blogging.

(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…)

Stopping dialysis: Really?

1-Nike® Try to Stop Me-001Doris recently wrote:

My husband has been on dialysis for 3 yrs this May. Before kidney failure he had diabetes and heart disease. To look at him, you wouldn’t think he was sick at all. But this year in December, he is planning to stop dialysis.

The thing is, I don’t blame him. With all these diseases he has been through hell.
He doesn’t really think he’s going to die, and that would be so awesome.
So he’s trying to see if there is a way to control his potassium. Any suggestions?

Hi Doris. (more…)

What’s it like to be on dialysis?

What is it like to be on dialysis?

In my last post I asked for your help in preparing a video for people who have just been told they need dialysis.  It’s a scary time and the first thing most people look for is information they can trust. Who better to provide that information that the BigD community?

I was asked for the video by MaryAnn & Rajiv in Bangalore, India.  They are putting together a range of videos covering dialysis and transplantation.  The video I have prepared has a short introduction then a series of 1 – 2-minute interviews where we asked a broad cross-section of people on dialysis four questions: (more…)