Late last June Julie saw an article in the local afternoon paper about a group organising a Flash Mob to appear as part of the Melbourne Fringe Festival in September and October.  The article showed about 20 people from Yarra Trams rehearsing a dance.  We really enjoyed video of the Sound of Music Flash Mob at Central Station Antwerp so we decided to get involved.

Called Crowd Play, it is the Fringe Festival’s large scale arts project for people of all ages, types, sizes and inclinations.  We both fitted into one or more of those categories, so we went along to our first rehearsal the following Saturday.  I dialyse Saturday mornings’ from 6:45am until around 10am, and after it I usually meet Julie for coffee, have a quiet lunch and maybe do a little shopping in the afternoon.  Nothing strenuous.

All that changed.  Our first rehearsal was in the auditorium of 3RRR, a community radio station in bohemian Brunswick.  There were about 30 people there, mostly young, energetic and flexible, and there was us, over 50, enthusiastic but creaky.  The dance goes for seven minutes and involves lots of arm swinging, leg kicking, chicken walking, wiggling, falling down and getting up again and even a Mexican Wave.

They began by working through each step, showing how it is done, then practicing it, then showing the transition to the next step, practicing that, then the next step and so on.  After about 5 steps, we would rehearse what we learned so far; have a break and move on.  It was great fun.  I realised two things very early.  Coordinated movement was not my strong point and it takes me a lot longer than I thought to turn through 360 degrees.

But who cares?  The idea of Crowd play is to have all kinds dancing.  It’s not a professional group, it’s just a crowd of people suddenly bursting into dance!  Not quite making the turn, or forgetting that first leg kick is half the fun.

By the end of the 1.5hr practice we were hot, thirsty, tired and well on the way to knowing the first third of the dance.  It only struck me after the session that I had completely forgotten that I had dialysed just 3 hrs before.

For the next three months, we practiced every Saturday:  a couple more times at the radio station, once in a breakout room at the Melbourne Museum in Carlton and then at the Blue Circus Studios in Fitzroy, below the ropes and trapeze.  The venues were an adventure in themselves.

Meanwhile other groups were practicing on other days, at similar public venues or at their workplaces (like Yarra Trams), where a Crowd Play ambassador would go to them to teach the dance.  In all about 500 people signed up.

Eventually we learned all the steps (sort of), and about the same time it was all of a sudden only a week to go before our first performance.  Three were planned, all on Wednesdays at 1:30pm in inner city locations, kept secret until the day before.

Our practices then became Large Group Rehearsals, held in the evening at the old Meat Market in North Melbourne.  About 80 turned up when we went on the Monday before our first Wednesday outing, and it was a real buzz with so many people dancing together.

In addition to the dance, there’s singing.  At the start of each performance a band called The Bandits, formed from people with intellectual disabilities, gradually gathers together and sings Dancing in the Dark.  Neither of us can sing for nuts, so we didn’t go to those practices.

Now all we had to do was wait until Tuesday, when we would receive an email with the first location.  It arrived just after lunch.  Our first appearance was at Flagstaff Gardens, right on the edge of the CBD to the north of the city.  There were also instructions:

On the day, arrive no more than a few minutes before the performance. Dress inconspicuously, but comfortably for dancing and singing, and only bring a bag if you can dance with it!  We won’t have anywhere to store bags and we’d hate you to lose track of it.  

There will be a “busker” with a guitar who will start singing with The Bandits – when they get to that first chorus, then everybody else join in! The dance will follow the song. 

At the end, remember to hold the final pose for a few seconds.

There will be media – both photos and video cameras there. Afterwards, some might approach you to get your thoughts on be a part of this great event.

Naturally we messaged everyone we knew and invited them along.  So much for an unsuspecting public.

Wednesday afternoon arrived and Julie and I met around 1pm near the Gardens.  We walked up to where it was happening to check out the lay of the land.  We saw a few other familiar faces, then left.  In the interim, a range of our relatives and friends arrived and set up camp.

About 15 minutes before “D” minute, we went back to the gardens and nonchalantly stood around, in direct contravention to the rules.  It’s hard to look casual when you are nervous.

Finally, the singing started and we moved forward.  Within 5 minutes about 200 of us became a genuine Flash Mob, dancing in front of a (mostly) astonished crowd.  We moved as one, more or less - I remembered most moves, but still couldn’t get those 360 turns right.  But it was great fun – what a buzz!  The audience clapped and hooted when we finished and Julie and I and every other dancer couldn’t stop smiling.

There were cameras there. We made the TV news that night, the paper the next morning and there is a  YouTube video.

Our next performance was outside the Melbourne Museum during school holidays.  There were about 250 of us there, and a bigger crowd.  It was just as big a buzz.

Our last appearance is next Wednesday.  It will be a bitter-sweet moment, at least until next year!

Who says you can’t enjoy life on BigD?

I’ve had an annoying excess phosphate/calcium problem for about a year.  I knew it was a problem because I developed a maddening itch, on my arms, chest, legs and back.  It drove me crazy.  And each time I started to scratch it just got worse.  I found it hard to stop, and constant scratching in polite society is a real conversation killer.  Eventually I found ways to minimise it, but now I have just about stopped it at the cause.

Kidneys specialise in more than urine, they also manage the calcium and phosphate mix through the parathyroid glands in your neck (see this post).  Once they leave the building, the calcium and phosphate mix in the bloodstream can go haywire, causing the parathyroid glands to release too much parathyroid hormone (PTH).  This creates a range of problems from itchiness to bone disease, heart disease and abnormal calcium deposits in blood vessels and other parts of the body (including the brain!).

One way to control this is to take phosphate binders (like Caltrate) with each meal.  These binders attach themselves to the phosphate in the meal and then head for the bowel, rather than allowing the phosphate to bind with the calcium in the bloodstream.

In dealing with this problem, my nephrologist first upped the number of Caltrate (calcium) phosphate binders I took, then offered a different type, Alutabs (aluminium hydroxide), made from aluminium.  There has been lots of studies that indicate aluminium is one of the causes of Alzheimer’s Disease, so I politely declined.  Some side effects are better than others, but Alzheimer’s ain’t one of them.

Then we tried Renagel (sevelamer hydrochloride if you prefer), which also didn’t suit.  Side effects vary with each person, and mine were stomach ache and diarrhea, so no.  Finally we settled on Fosrenol® (lanthanum carbonate hydrate) a horse pill-sized chewable tablet I take with meals.  This worked initially, but gradually my PTH jumped again.

This had happened to me before.  Then, the only way to stop the glands was to surgically remove them.  I had 90 percent parathyroidectomy in 2001, but over the next ten years they grew back even stronger (if only kidneys could learn that trick).

Now they can be stopped with a drug.  It’s called Cinacalcet, or Sensipar®.  It lowers PTH by telling my parathyroid glands to stop releasing too much PTH into my blood.  It also lowers calcium and phosphate levels.  I think of it as chemical surgery.  Once you start, the tests and management is the same as surgery.  I started on 30mg per day and daily blood tests to track my PTH, phosphate and calcium levels.

Ideal levels are:

• PTH:  between 15- 21 pmol/L
• Corrected calcium:  2.2 – 2.4 mmol/l
• Phosphate:  1.1 – 1.8 mmol/l.

It took about a week for my PTH level to fall into the ideal range.  Once there I cut back to  30 mg every second day and twice-weekly blood tests.  My calcium and phosphate gradually fell over two weeks.  In fact the calcium fell below the ideal range, so I now take two Caltrate between meals, to boost my blood level calcium.

Sensipar’s most common side effects are dizziness, skin tingling, nausea and vomiting, with the usual undesirables less likely.  Fortunately, so far, touch wood, mine are minimal (and I would like them to stay that way).  Once all is under control and stable, I will go to weekly blood tests.

I have been on Sensipar now for about a month.  Early days, but worth documenting.  I’m looking forward to two main benefits: reduced itchiness (which is happening, I don’t use the creams anymore) and my bones recovering the calcium that has been leached from them over the last year.  I won’t be able to feel that when it happens, but, I have a bone density test coming up next year, and I am expecting good news.

I’ll let you know how things proceed.

This post is about fistulas, the dialyser’s lifeline.  It’s about how and why the can haemorrhage, signs and symptoms that indicate a potential problem and action to take to prevent it.

We BigD-ers need a fistula to make it easy to insert dialysis needles.  The needles are reasonably large, and cannot be inserted into normal veins.  If you don’t have a fistula and you need to go on dialysis, you usually get a Perm Cath (permanent catheter) or central line that is connected directly to one of several large veins in your neck.  If you can’t grow a fistula on one or both arms because the vein has too much scar tissue, you can have an artificial graft tube, called a graft, inserted into your arm to provide the same access.  I have written about these and how they work in previous posts.

While our fistula keeps us alive, it also threatens our lives.  It is a great big pressurised blood vessel a couple of millimetres under our skin.  A small tear or break, and we can bleed to death in minutes.  Yet we puncture it every day or two and seal it off with a pad or gauze for an hour or so, then we puncture it again.  So just how much of a threat is it?

In February 2010, I wrote a post called Dialysis: death via a damaged fistula, which was about Maya’s father, who died when his sore and swollen fistula burst in bed and he bled to death.  At the time I asked some of the experts I knew about this and all said it happens, but was very rare.

However, over the following 18 months I had a steady trickle of comments about other people who had died or came close to death from a leaking or haemorrhaging fistula.  Coby  wrote about a dialysis patient who nearly died when her infected fistula burst.  Salma’s father was saved by intensive care when is fistula bled out.  Steve’s father bled to death in 10 minutes when his fistula burst after two weeks of problems.  Mek’s father bled to death after multiple bleeds over a few weeks.  Sandy’s husband had an emergency flight that saved his life after his fistula haemorrhaged.  Ebony’s father found his wife on the kitchen floor after her graft burst.

What did these people have in common?  In each case, it didn’t happen overnight.  Their fistulas were red and sore (infected or blocked), or had weak spots that failed to re-seal after needling:  their fistulas needed medical attention.  I have praised the people in my unit before, but they deserve it.  They are constantly examining everyone’s fistula.  If there is a problem, they act: either with antibiotics and treatment, or a referral to a hospital or vascular surgeon, to examine and rebuild the fistula.  In a unit of 40 people, I know of at least 10 that have had rebuilt fistulas.

In each of the above cases, this didn’t happen.  Dialysis unit/medical staff missed, ignored or played down life threatening fistula problems.  And any fistula problem is life threatening.  In most cases, the person writing the comment was exploring legal action, and rightly so.

So how common are fatal haemorrhages? 

It seems to depend on the quality of the unit.  In a well-run unit, fistula/graft haemorrhages are rare.  That doesn’t make it any less traumatic for the families when it happens, but mostly, unless you have some specific problems with your graft or fistula, it is not something to lose sleep over.  Most fistulas and grafts are solid and robust.  Fistulas grow slowly and are usually quite firm and elastic.

What causes a haemorrhage?

Typically, there is some weakness in the fistula or graft.  The owner may go to bed and during sleep lie on his/her fistula, creating a higher pressure than it can take, causing it to reopen a needle access hole, or to tear at its weak point.  Arterial blood at high pressure then streams from the opening.  If no action is taken, that person then dies from loss of blood.

What can cause that weakness?  Signs and symptoms

In a fistula, over several few years the vein wall can expand a lot.  It can look like you have a mouse under your skin.  I have seen quite a few mice; I have a couple myself.  If the expansion becomes too large (it can look Popeye’s forearm or an extra bicep), the walls of the fistula become very thin and weak.  Just like a balloon that has been blown up too high, it loses its suppleness and becomes fragile.  With very little fistula wall to repair, and only a thin layer of skin over them, access holes can become points of weakness.

As they get older, people in their 70s and 80s, find their skin becomes thinner and more fragile.  Their fistulas will naturally be weaker and less robust than that of a 40-year old.

Grafts in particular can become blocked or leak into the skin surrounding access holes.  Blockages build up pressure in the graft, combined with unhealed access holes create weaknesses. Also, since it is a piece of inert material, it won’t get sore like a fistula, so there are no symptoms until the problem (or infection) is well advanced.

Infection, which may start on the outside of a fistula or graft near an access hole, can if untreated, gradually burrow into the fistula and eat away the fistula wall, creating a hidden, fatal point of weakness.  Infection is usually accompanied by swelling, pain and sometime pus discharge, which are strong signs of potential danger.

Action to take

There are at least two lines of defence.

At the last line of defence, dialysis unit staff and your nephrologist should be watching for signs of fistula/graft weakness, and take action as above.

At the first line of defence is us, the fistula owners.  We need to check our fistula every time we dialyse.

How does a fistula grow as big as magician’s balloon?  One day at a time.  Keep an eye on how big your fistula is growing, and talk about it with the unit staff.  Big fistulas are not only unsightly, they are dangerous.  Talk to your nephrologist and arrange for fistula surgery with a vascular surgeon to reduce it back to “normal” size.

Look for infection: any pain, swelling or discharge.  Tell your nurse or doctor as soon as possible and begin a course of antibiotics.  Be scrupulous with hygiene.  Wash your hands and your fistula when you arrive, and again before you leave.  Dress and sterilise any cuts or scrapes on or near your fistula.

Look for blockages.  Lift your arm over your head and check that it collapses as the blood flows from it into your body.  Check that it recovers its shape when you lower your arm and the blood returns.

If find anything you don’t like about your fistula, tell the unit staff.  And don’t take no for an answer.  If they are slow to act, tell them that you consider the problem life threatening.  Make sure they do something.  Tell your carers and get them to tell the staff.  Tell your doctor.  Make a fuss, but get it fixed.
The alternative is too bloody to think about.

(Sorry about the delay in writing.  I have been working on a post about the appropriate treatment for fistula haemorrhage, signs and symptoms, actions to take, so that people can compare what should be done to what was done.  It is taking longer than expected, but it’s coming soon.)

For a range of reasons, I stopped going to the gym about six months or so ago.  I had aches and pains and a little arthritis, and it seemed to me that the gym wasn’t helping.  Also, my knees became wonky to the point where I couldn’t run for 30 minutes without ending up needing a Zimmer frame for the rest of the day (almost).  I had lost my Moxy – my style, my coolness, my confidence.  So I got the sulks, and decided that would I drop my gym sessions and runs, and replace them with extra walks and more rides on my exercise bike at the BigD.  What difference could it make?

Not my smartest decision.

Of course I didn’t walk much more than before.  And the time I used to take exercising, I either slept away or just worked more.  And while the BigD bike is good, it’s not vigorous enough to replace a three-times a week exercise program.  So I slowly (actually, not so slowly) became less fit, even more creaky, less enthusiastic about life and maybe a little dumber.  So Julie (who could see my new mini-exercise idea was mini-smart) suggested I try Pilates, a much lower impact exercise regimen.

For the last five months I have done Pilates twice a week, once at a studio, once at home.  I found it a little disconcerting at first.  I was the only man, and there was lots of talk about exercising your pelvic floor, a mystery to me until I read the handout: “It is important to grasp the correct feeling when exercising the pelvic floor: for women, squeezing a tampon, for men, lifting the penis.”  Got it.

Pilates is all about flexibility, posture and core strength, and at first it seems a little lightweight.  Nothing too strenuous or painful, just prolonged bends and lifts at funny angles, to exercise a single muscle or group.  But after a while my aches and pains diminished and I felt fitter.  After a few months I was ready to do a more.

Talk about timing.  A new gym has opened up near where I live, offering a pretty good deal to get started (at around the same price as the YMCA gym I used to go to).  So I went along and ended up joining.  I also purchased the most unheard thing I ever heard of, time with a personal trainer.

This turned out to be just what I needed.  I had gone to the same gym for about four years, doing the same exercises throughout.  Now I know that any sensible person will tell you just how dumb that is: for in the gym as in all, variety is the spice of life.

The first thing my trainer said was to keep changing the exercise routine.  If you go three times per week, have at least three different routines, so your body doesn’t get used to the exercise and you don’t get bored.  So far, it’s working a treat.  I am enjoying the exercises.  I actually feel a little stronger (I can lift weights that would not move two weeks ago).  Of course, I’m starting from a very low base, but don’t we all?

I paid the trainer (a surprisingly respectable fee) for the first 10 sessions. I began with twice a week, but quickly dropped to once a week.  During this time I told him what parts of my magnificent body I wanted to develop, and he designed exercises (mostly using machines) to build them.  And I am definitely sore in all the right places.  I have now dropped back to monthly sessions, by which time I may be ready to move to free-standing weights.

I also purchased some new gym clothing.  The stuff I used to wear was pretty tired, and has now been promoted to gardening duty.  I must say I get a psychological lift from the new gym gear, shallow as that sounds.  I have a long-sleeved lightweight top that covers my fistula and makes me look like any other scrawn working on building up.  Real gym shorts, rather than football shorts and even a poncy little gym towel complete the outfit.

I am still a little creaky, but I am starting to stand up straight again, I feel pretty good most of the time, and I have my moxy back!   A giant change from six months ago.

If it works for me, it can work for you (whether or not you are a BigD member).  Pilates is a good start, about an hour per session a couple of times a week, then as your moxy begins its long trip back to centre stage, think about the gym…

After years of discussions and promises, our whole unit moved to brand new premises last week.  But this was only the latest in a series of changes that were driven both locally and internationally.  It has been an interesting journey, playing musical chairs both in ownership and location.

History

The Unit was set up 17 years ago in 1994, as one of the first private dialysis units in Melbourne.  It started as a three seat, eight-client ward in the Diamond Valley Community Hospital in Greensborough, with Dr Jon Snider as Head of the Unit and Anna Catterall, the wonderful Unit Manager I have written about before.  The Unit grew over the years, until there were eight seats supporting 20-plus clients in a largish wing custom designed for dialysis.

Meanwhile the Community Hospital was taken over by the Mercy Health and Aged care, to become the Mercy Diamond Valley Hospital.  It then closed and reopened as the Diamond Valley Community Centre.  When the Community hospital closed the Unit was sold to Gambro, based in Sweden.

Gambro itself was sold to a group of Scandinavian investment companies in 2006, and in 2007 the new owners split Gambro in two: the original manufacturing company, and a new services company, Gambro Healthcare, which operates Gambro’s 155+ dialysis units in Europe, South America, Asia and Australia (including our Diamond Valley Unit).  Within a month, Gambro Healthcare was sold to Bridgepoint, a private equity group based in the UK.   In 2007 Bridgepoint renamed the company Diaverum.

Diaverum is a name in two parts.  The first part, ‘dia’, represents their core activity, dialysis and renal services.  The second part ‘verum’ means truth in Latin for the honesty, transparency and reliability that the company strives to be known for.

From what I have seen and experienced, they absolutely live up to their name.

The Move

At the Unit Christmas party last year Chris, our super Unit Manager (from the same mould as Anna) confirmed that we were at last moving to a new spot just down the street.  The new Unit, an existing two level, stand-alone building, would be completely redesigned for BigD.  Over the following months, Chris negotiated with builders, armies of government representatives, Diaverum management, staff and the occasional opinionated BigD patient to get the kind of ideal unit she had dreamed of for many years.

For the past few weeks it was a race with builders, painters, plumbers, gardeners, electricians, computer and dialysis technicians, medical suppliers and more to finish in time for the move.  For several weeks we had been told that our Unit would be closed for business on Tuesday and open in the new unit two days later on Thursday.  One of our sister Units, Diaverum North Melbourne, would cover the gap.  Chris and Cath worked out schedules and arranged for taxis to transport all those clients who did not want to drive the 34 km (21 miles) to North Melbourne.

However, the best laid plans and all that.  It is an established fact that the highest risk times for any building are at the start of its life (when so much is happening) and the end of its life (when all maintenance stops).  And our old building ran true to form.  Early Sunday morning before the Tuesday close, the water filtration (Reverse Osmosis – RO) system imploded.  Water everywhere, but not a drop for dialysis.  So Emergency Plan A came into action and the switch to North Melbourne happened early.  Very early.

All the equipment and consumables not already moved there were rushed to North Melbourne, followed by the Sunday patients.  That Unit couldn’t accommodate all the Sunday/Monday patients at their usual times, so Monday patients were called in to Dialyse late into Sunday night.  I was watching George Gently on ABC TV at 8:30pm when I got the call: come in by 9pm, stay three hours and go home (they had been calling all day, but my phone was resting elsewhere).

So the adventure began: I entered the address into my trusty TomTom (iPhone version) and drove off into the night.  I was met by two very tired staff, Chris and Cath who had been there (and on the road between each unit) many hours.  They found my BigD box, some blunt needles and by 9:30pm, I was on.  There were lots of familiar BigD faces in those unfamiliar surroundings!

Since North Melbourne runs the nocturnal service I wrote about a few weeks ago, I got to see it close up.  All the overnighters were in the adjacent room, just settling in for the night.  I thought that this would be a good way to trial nocturnal dialysis for myself, since it was getting onto my bed time and here I was dialysing.  However, I just couldn’t sleep.  It may have been the novelty of the occasion, or the buzz of an emergency, but I don’t think I dozed for more than about 10 minutes for the whole session (which is strange because I can sleep an hour at a time when I go to early morning BigD in my normal unit).

So, three hours of reading, watching some quite strange TV and stranger late-night ads, staring into space and trying to sleep, and it was time to get off and go home.  I was disconnected by 12:45am and home by 1:15am.  I took me another hour to get to sleep and I awoke at 7am in Bizarro World.  Monday, and no BigD for me today.  I was tired and there was no reason why I couldn’t stay there another couple of hours, so I did.  When I finally got up, it was 11am, and I would usually be just arriving at work after morning dialysis.  So I set off for work and pretended all was well.  But it wasn’t really.

Two more days of dialysis at North Melbourne, blissfully uneventful.  The organisation like clockwork – or the staff made it look like clockwork!

The New Unit

Then, finally, Day 1 at the new unit.  First impressions?  Bigger, brighter, newer with lots of windows and lots of space, especially between each machine.  It is a little less intimate: no more spontaneous conversations with neighbours on machines.  Freedom from interruption is both good and bad.  It makes for a peaceful run, but you have to make sure you walk past everyone at the start/end of the run if you want to stay in touch.

Still some work to be done on a way to provide a platform for PCs and other digital stuff, but otherwise great creature comforts: parking spaces, digital TVs, excellent lighting (for us hard-of-seeing), WiFi to come shortly.  And the clean and bright has a big impact after the dark and tired of the old unit.

I got my new access code, just for me, which I guarded jealously until someone told me theirs – and it was the same!  Then I realised that BigDers needing the same access have the same code.  Sensible when you think about it (but not so special…).

The extra space has changed the way the staff have to work too.  They are designing different work practices to find the most efficient ways to do things, rather than walking an extra mile a shift to pick up forgotten items.  So things don’t have that easy-going feel of the known in the old unit, but I’m sure it will come.  The shock of the new fades quickly. (If I don’t write about it this week, it will probably be gone next week, replaced by the shiny new normal.)

Overall rating?  Two thumbs up!