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.

 

 

Guest post: Holy Roman Holiday

Lorraine from Melbourne shares her excellent Roman adventure:

I want to share with you my experience after starting haemodialysis at Diaverum Diamond Valley  in August last year.  As well as taking courage to successfully return to my part-time work in a gradual way after a period of depression following my hospital admission  I managed with no hitches to undertake a short overseas trip to Rome.

Even though I was extremely ill earlier last year with a long hospital stay, including nearly two weeks in ICU and with no immediate prospect of overseas travel, I decided with much faith to renew my expired passport. Little did I think that I would need it to travel to Rome in February this year!

I went with two friends to participate in a congress and private audience with Pope Francis for the 25th anniversary of an international network of business entrepreneurs, workers, students, researchers united by a vision of the world and the economy oriented to the common good and the integral development of the human person and society.

With the wonderful help of Chris, our Unit Manager, my dialysis sessions were seamlessly organised with Diaverum in Rome and providentially I was not even charged! But there was an even more extraordinary moment of providence when I met Pope Francis personally as a representative of the Zone of Oceania for this network. The photo says it all!

But there was an even more extraordinary moment of providence when I met Pope Francis personally as a representative of the Zone of Oceania for this network. The photo says it all!

Lorraine with Pope Francis

Lorraine with Pope Francis

It certainly does. Thanks Lorraine, you are an inspiration BigD-ers everywhere.

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…)

The first time

scared-womanWe all remember our first dialysis session. I certainly do. At the Central Dialysis Unit, just down the stairs from Ward 4, the kidney ward. It was a super emotional time. Julie walked with me into the unit, my heart thumping, my mind racing, looking everywhere, taking in everything. I kept my face blank, hiding both fear of the unknown and anger that it was really about to happen. Everything was new and unfamiliar. Nurses moving briskly about. Patients on dialysis machines in all directions. And there, across the room, an empty chair next to a humming and flashing machine, just waiting for me.

Luckily, the Unit Manager was an experienced and sensitive soul. She knew it was my first session and made sure I knew she knew. “I know you’re not too happy about being here, but we’ll do our best to make today a gentle start to your time on dialysis. *Heather will be putting you on today. She is one of our best cannulators, (more…)

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. (more…)

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 (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…)

Road trip to Adelaide!

Julie has been commuting to her work in Adelaide a few days a week for more than a year now. So, for a change of pace, we decided to start our New Year by driving there together for a working holiday – she would work while I’d be on holiday!

There’s nothing as romantic as a road trip, where we could check out the delights of remote Victorian and South Australian country along the way. When you fly, you leave home, sit in a tube for an hour or so and you are there. On a road trip, the holiday starts as you pull out of your driveway. (more…)

Living well on dialysis? Absolutely!

BigDandMe is all about living well on dialysis.

Hard to imagine when we first hear the bad news: I’m going on dialysis. Then, our life seems to be consumed by shock, anger and not a little fear. But for most of us, that doesn’t last, because after a few weeks, we start to feel well again, and our resilient side comes to the fore. Our life is not over, just different. And dialysis is the price of the ride.

It is always great to hear of other BigD-ers with this living-life-to-the-full attitude.

 

wayne-cooper-dela

Wayne Cooper LSBM at DELA

Like Wayne Cooper, a board member of that wonderful South Australian institution, the Dialysis Escape Line Australia*. DELA’s main goal in life is to set up temporary dialysis units at resorts and on cruise ships to allow patients a holiday, without the stress and difficulties commonly experienced when organising treatment away from home. (more…)

Life 2.0 – a chance to fix the faulty bits?

dna-crane

Rebuilding DNA with CRISPR. Source: New Yorker, Illustration by Todd St.John

BIG things are happening in genetics, for BigD-ers and for the rest of the world. Scientists have discovered a naturally-occurring, highly accurate gene editor, that can be used to cut and paste or delete genes or parts of genes in DNA. They can use the editor to remove a disease-causing mutation, replace faulty or undesirable parts of a gene or to turn a gene off completely.

What could this mean? Say you’ve inherited a genetic mutation that guarantees you’ll get polycystic kidney disease by the time you reach adulthood. And that it is most likely you will spend the rest of your life on dialysis.

What if the mutant genes that cause polycystic disease, passed down from generation to generation, can be clipped out of your genome entirely and you never pass it on to any of your offspring? (more…)