Have you seen this before? Can you help?

I have a friend, George (not his real name), who, apart from being on dialysis, has an unusual bursa problem. Talking about it with him, it occurred to us that other people may have the same thing and have some advice about how they manage it.

George’s swollen bursa

The problem is with his infraserratus scapula bursa. A bursa is a thin cushion of lubricating fluid located at a point of friction between a bone and the surrounding tissue/bone. George’s problem is the bursa just below his right scapula (that is just below the wingy part of his shoulder). Its job is to lubricate where the shoulder rubs against his rib cage.

 

Time for draining! – About 150mls of bursa fluid and blood

In his case, his bursa decided to fill itself with fluid, to the point where it has become a 150ml-plus bag of fluid extending down the right side of his back. At first (when it was small and manageable), his local doctor worried that it was cancer, so he was referred to a specialist surgeon, who ordered an MRI of the area. It identified the bursa as the problem, so his cancer worries disappeared.

But how to deal with the bursa? It was not painful, just annoying and embarrassing. After some detailed research (using Dr Google and his army of medical partners, here and here), he discovered that it probably began as an overuse problem, following 20 years and hundreds of hours extending his right (fistula) arm for dialysis. This is not a common problem, but it is (yet another) known outcome of long-term dialysis.

As an interim measure, the surgeon drained much of the fluid and sent him home. Over the next three years, he had several Cortisone injections aimed at stopping the fluid flow and the bursa drained about once a month. Nothing worked: it just kept coming back, each time a little larger. It is now interfering with his sleep (and dressing – T-Shirts especially!). He finally decided to see if there was a better way to deal with it. He saw several specialist surgeons, most of whom recommended removing it surgically.

The trouble is that as a long-term dialysis patient, George has all the co-morbidities associated with that: AF and other heart problems, compromised immunity, bleeding and general fragility that makes an operation quite dangerous. After long discussions with his Cardiologist, he has decided to wait about six months. He has been told that the bursa may reach a certain size, then stop growing (when the fluid pressure on the bursa bag holds back the production of more fluid). This is not certain, but he’s giving it a try.

If it does not stop expanding, then his Plan B is to risk surgery.

Crowdsourcing! Tapping into the wisdom of the crowd.

But even though it is rare, surely someone has or had something similar. And perhaps they have found a better way to manage it. That’s why he decided to put his story on BigDandMe, to reach as many dialysis patients as possible, and maybe find another way to deal with it.

So if you can help, or know someone who may be able to help, please add what you know to the comments, or email me directly (see About).

Who knows what can be achieved with the power of crowdsourcing!

 

Update

George’s bursa was aspirated (drained) a week ago and the doctor collected 220mls of fluid and blood.

It seems that there is no limit to how big the bursa can get. George has now decided to talk to a surgeon about having it removed. But he is still keen to hear from others who have experience with this kind of problem and would appreciate any further feedback or advice.

Purple House – life-saving, community-saving, inspirational or all three?

I fact it’s so much more! I wrote about this amazing group of people, led by the fantastic Sarah Brown in August 2017, and she and the House have gone from strength to strength.

But don’t just take my word for it. This astonishing interview on the ABC’s Conversations is just a glimpse of how she has changed the world not just for people on dialysis and their communities, but for all of us.

Bringing life-saving dialysis to the bush with Sarah Kanowski. Sarah Brown always wanted to be a remote area nurse. Then she began a medical revolution 51mins 25secs, Wed 3 Oct 2018

 

Just a reminder: Western Desert Dialysis reaches 18 communities

Part of Purple House’s 18 Communities Strategic Plan

 

Sarah Brown in front of the purple walls of Western Desert Dialysis in Alice Springs

On dialysis at the Purple House

 

Then there this: more shameful than inspirational

Again, I’m a little late to the party, (this aired in May)  but have you seen this story?

It is a truly shocking report. it confirms our worst fears: US dialysis is in crisis. The most expensive dialysis service in the world has the highest dialysis mortality rates.

Two for-profit giant companies (DaVita and Fresenius) deliver 70% of the care, overwork and underpay staff while making enormous profits. From this report, it is clear that the industry is overwhelmed by bad incentives, poor oversight, and profiteering.

Any wonder why over 70% of the fistula rupture stories on this blog are from US readers.

The one small light at the end of the tunnel is the California Dialysis staffing bill.

But first, have a look at the report (Language warning!).

Medscape has a great article about\ the California bill, (it’s free, but you may need to log in), that has attracted a huge number of comments, all in favor.

For example, one nurse wrote:

…The problem arises when you take care out of patient care.  By this, I  mean that the monetary value of running a clinic outweighs the quality of care provided by the staff.  You can not expect Staff to give the quality of care when they are overloaded with 4+ patients to care for and only have 15 minutes between each patient to rinse back, take VS, close up their access (be it a catheter or a access (graft or AV Fistula)) and put another patient on by doing their VS, quick assessment, cleanse their dialysis catheter/ graft/av fistula, start their treatment, document on the patient and give report to a charge nurse.

And another:

…I was tired of on-call and went to work in-center and my ratios in New Jersey were 3 patients per tech, nine patients/RN.  I had to assess 9 patients and put on 3 every shift and when you have techs they may put the patient on the wrong bath, not do vital signs timely, with no time between shifts if you had a patient hypotensive, it was insane.  A patient died on that unit, but not assigned to me that day because the techs did not do their vital signs and the nurse was busy doing something else. The B/P kept on dropping and no one assigned in that area ever told the nurse assigned there.  You still have to do care plans, monthly notes, give blood, give meds, and get yelled at because you are not doing turn over fast enough.

How the No boosters keep a straight face is beyond me.

One interesting thing from the video: when these companies are sued, they settle.

Food for thought for anyone who has had a loved one die from a fistula rupture in one of their units,

Community Run Dialysis – Inspirational!

Over the last week, I’ve been working on a new project that involved making a list of all the dialysis units in Australia (more on that soon). In the process, I discovered that all units are either public (free via Medicare) or private (fee charging), except one, which is owned and run by dialysis patients and their families.

Run by patients and families? What the…?

Of course, I had to know more, so I contacted them and discovered firstly that they’ve been around a while and I’m a bit late to this party. But that made finding them even more heartwarming and inspiring.

This community run dialysis service follows a very different model. It is focussed not just on dialysis, but also on the community, on keeping people together. Imagine a place where family and community, culture and country are integral to a happy and fulfilling life. Where people live in small communities, huge distances from large population centres.

Imagine also, that many of these people can, for various reasons, be more than twice as susceptible to kidney failure as the rest of us. And, because their communities are too small to justify individual, government-funded clinics, the only option they have is to leave their community and move to a city where they can dialyse. That is, move permanently from their lifetime home.

Most are elders or elderly. Their separation hits them hard: they become lonely and isolated and begin to lose the joy of life. Their families and communities miss them; miss their wisdom, guidance, and love. People began to worry about the future of their communities without elders there to provide leadership and pass on cultural knowledge; there was a very real risk of disintegration.

So they drew deep from their community, art, and culture, and changed the game. I’ll let them take up the story:

Determined that renal failure should not be a one-way ticket … away from family, country and everything important, senior men and women created four collaborative paintings.

Kintore Women’s Painting

Kintore Men’s painting

With the help and support of Papunya Tula Artists (their artist’s community), Sotheby’s Australia and local NT politicians, these were auctioned at the Art Gallery of NSW on the 11th of November 2000, raising over $1 million dollars to set up a dialysis service at Kintore (the first of the tiny remote communities in the Western Desert of the Northern Territory).

Patient Patrick Tjungurrayi receiving dialysis in Kiwirrkurra with his grandchildren.

Since the commencement of dialysis treatment in Kintore in 2004 we have grown to have dialysis units in 8 remote communities, as well as at the Purple House in Alice Springs. 

Then, in 2011, we created the Purple Truck, our mobile dialysis unit, to give patients the opportunity to spend time in their home communities where there is not a permanent dialysis unit, where they can to reconnect and recharge.

Patient Janie Miama receiving dialysis in Docker River

In 2003, they incorporated as Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation (Western Desert Dialysis). The name means ‘Making all our families well’ and it recognises that people must be able to stay on country, to look after and be looked after by their families.

Western Desert Dialysis CEO Sarah Brown with her award

And success breeds success. As they have grown, they’ve attracted other talented people, like their Chief Executive, nurse Sarah Brown, who was voted Australia’s top nurse for 2017.

And organisations like Medicines Australia, Papunya Tula Artists and Fresenius Medical Care, whose generosity and support helped start and run the Purple Truck.

There’s more. In November 2016, Western Desert Dialysis won the 2016 Reconciliation Australia/BHP Billiton Sustainable Communities Indigenous Governance Awards, Category A Award for incorporated organisations. Professor Mick Dodson, said: “It’s their humanity that stands out in their governance. They’re a family that really cares for every member in the way they deliver services. Aboriginal culture has been wrapped around access to modern medicine and allows it to be administered in a holistic and culturally appropriate way. They’ve … got the administrative nuts and bolts of good governance and are taking innovative approaches to community leadership.”

Take a bow, Western Dialysis Directors.

Still more: Over the last couple of years, they have developed some great education resources for dialysis patients, including this video (in 3 local languages as well as English). It’s excellent. Simple, easy to understand and educational for anyone on dialysis. Check it out!

How great is all this? So many good messages. Beginning with the amazing power of art to influence and change lives.

And smart, inspired people taking responsibility for their own health and well-being to deliver dialysis the way they most need it.

Sounds like yet another example of the ePatient movement, not just sitting back and hoping.

There is a lot more to their story: Check out their beautiful website (showing some of the fabulous artwork) and subscribe to their mailing list. I have a feeling there’s a lot more excitement to come.

My Fistula, My Friend

I’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.

Except 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.

And 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.

In 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.

Steal 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,

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.

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.

Quick read: How to slow/stop your fistula bleeding

The 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

Speaking of dialysis…

As 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: