How much is a new kidney worth on the Red Market?

Not feeling all that energetic this week (same as the last couple).  For some reason my haemoglobin is still hanging loose at a miserable 8.2.  That is transfusion level, but because I’m on the transplant list, transfusions are off the agenda.  Someone else’s blood may introduce more antibodies than I can handle, and move me from a 2% likelihood of a transplant to a big fat zero.

So I am biding my time, taking my weekly EPO dose and hoping for a surprise energy burst anytime now…   In the meantime, my gym is sending me “Where are you?” messages and I’m breaking ito a sweat jogging from the kitchen to the bathroom.  Though with the daily HB blood tests removing a little of what blood I have, I may be running in a circle.

Since my creative juices tide is on the ebb, I thought it may be interesting to relay some stuff that you may find interesting that other bloggers have sent me: How Much Is Your Body Worth on the Black Market? (Which is now being called the Red Market for obvious reasons.)  I don’t re-post stuff from people pushing their own agenda (especially not kidney-for-sale posts or subtle/not-so-subtle internet hucksters).  But for some reason this blog gets up to three posts/emails a month from individuals or organisations in easy-going countries offering either to sell kidneys, or to arrange the whole transaction, from finding the donor to the complete transplant.

So this re-post seems appropriate.

Black Market
Source: http://www.financedegreecenter.com/black-market-body/.

Go there for more “pricing” details.  Greg

I’m a HemoDialysis Ghost

Now for something completely different, from googleMWgalaxy42.com, dated 29 June 2019.

I’m a Hemo Dialysis Ghost and I’m OK

A couple of weeks ago the bosses at the HDGhosts.com asked us to write a review of our job for their recruitment website (for money!).  Here’s my review.

I’m getting ready for my fifth session as a HD Ghost.  So far it’s been an OK  job.  Not exactly hard work, though it does take a day or two until you feel well again after each session.  But the pay is pretty good, and since it’s the first real job I’ve ever had, and I’m 28, and my dad has never had a job, I’ll stick at it for a while yet.

I wasn’t sure when I first saw the video calling for HD Ghosts flash up on my YouFacePage.  The money was the thing that got me in: pretty good for just an hour’s work – and more than most people get for a day or two mowing lawns or hitting the phones at the call centre.

There had to be a catch, so I hit the More Details button, and there was.  The girl who told me about the job said that I had to have blood tests to make sure I was compatible, a couple of days training and a small operation, called the Buzz, on my arm.  They would pay me for that too, and give me an allowance for the month I had to wait until I could start.  I also had to stick to a fairly simple diet two days before each session.

I wasn’t sure, but the money looked awfully good…

I hit the Review button and searched GalNet to see what people who were already HD Ghosts said.  Guys and girls all said it was for real, that the money as real and it was a regular job. They said the Buzz was no big deal, they were looked after pretty well, and the people running it were nice.

So I hit the Accept button.

I had the Buzz operation two days later, on my left arm.  I was awake the whole time, with just my arm asleep.  It didn’t hurt at all.  I felt a little strange though.  A little scared and maybe a bit upset with myself.  I don’t know exactly why I felt that way.

I could feel the Buzz as soon as the main bandage came off.  Just touching the spot where the cut was made – a small vibration, that pulsed on and off with my heartbeat.  It was cool and scary at the same time.  The doc who did it said it just meant that the vein was growing bigger, so it could take the needles.  Everyone in the job has the Buzz.

The next month went by fast.  I did pretty-well not much at first.  I had enough money from the Buzz and the allowance, so I ate and drank, hung out, surfed GalNet and watched videos.  In the last week I did my training at the unit, met my HD Body (Marnie, a small, dark haired woman about 60 years old) and thought about my first session as an HD Ghost.  I mostly stuck to my diet.

On the day, I arrived at the unit at 7am wearing my newly provided white tracksuit and joggers.  After a friendly greeting, I had a weighscan and it directed me to room 2.  There was Marnie, now in a pink tracksuit.  There were two reclining chairs in the room, one each side of a blood pump about the size and shape of a big shoebox.  Plastic tubing from the pump lay on each chair.  We both sat and waited.  Soon a nurse put two big needles into my arm, close to the Buzz (they hurt a bit, but not heaps), and connected the tubing.  Then she did the same for Marnie.  At the pump, she turned some dials and it started pumping.  Blood came from me, through the pump and into Marnie, while Marnie’s blood came the other way, from her into me.

As they explained it at training, Marnie’s blood is full of toxins and her body has too much water because her kidneys don’t work, so she has dialysis three times a week to clean her blood and remove the extra water.  The trouble is, dialysis doesn’t take out all the toxins, and over the years they build up and stuff up her joints and bones, so she needs her blood filtered by a real kidney at least once a week.  That’s my job: I’m her HD Ghost, or at least one of them.

Each week for about an hour, a fair bit of her blood and the crap that is in it goes into me and my good clean blood goes into her.  After the hour, I am disconnected from the pump and her second HD Ghost is connected, to get rid of more of her blood and give her more good blood.

It is a funny feeling.  Over the hour, I feel less and less well, weak and tired, because a lot of Marnie’s toxins are now in me.  I usually go home and have a sleep, and over the next few days I just let my kidneys do the work.  At first, I pee more than usual, and sometimes my poo changes color for a while, but gradually I feel better and things return to normal.  By the end of the week, I’m ready for the next session.

I don’t know about other people, but I feel OK about being a HD Ghost.  It’s simple, the bosses look after me, I get regular check-ups, lots of down time and best of all I’m in the money (at last!).  It may not suit everyone, but for me its money for old rope (or old blood!).

Dialysis and the Pill Cam

As discussed a month ago, the top-down and the bottom up searches for a gaping, bleeding, pus-filled wound as the reason for my fall in haemoglobin came up with a fat zero.  So, being nothing if not thorough, my Gastroenterologist ordered one more test to explore where no probe had gone before: the undiscovered country of my small intestine and the upper and lower reaches of my large intestine.

The Pill Cam pack

The Pill Cam pack

Naturally, he ordered the latest no-strings-attached technology – the Pill Cam, or Pill Camera to the uninitiated (are there any uninitiated anymore?).  It’s a simple and painless device that consists of a camera, a flashing light (it’s darker than black inside our guts) and a wireless transmitter, all packed into a capsule about the size of a jumbo jelly bean.  During its journey through me, the Pill sent a constant stream of pictures to a receiver unit strapped to my hip.

Ready to eat!

Ready to eat!

The receiver was a lot like the Sam Browne belt that British officers wore during WW1 and WW2: a thick belt around the waist with a thinner strap across the shoulder.  Rather than a sword, this time the thin strap held the antenna for the wireless signal draped across my chest; the thick strap held the receiver, a nifty unit about the size of a two iPhones taped together, with a screen showing the live feed from the camera.

There was more preparation than I expected, but no great challenge from a dialysis viewpoint.  My small bowel had to be empty so the camera could look at its walls, so no iron supplements five days before; no food except clear fluids after lunch the day before; nothing to eat or drink from 10pm, until I swallowed the pill.  Once swallowed, nothing for two hours after, and then clear fluids only for two hours after that.  By that time the pill would have moved from the small intestine to the large one, and on its journey to a wider world.

Initially, I was fixated on the screen.  I found that if I wriggled and moved my stomach in and out, I could move the camera and the view would change.  Though I really couldn’t interpret what I was seeing very well, and I saw no gaping, bleeding, pus-filled wounds (a good thing).

The Fantastic Voyage view

The Fantastic Voyage view

It reminded me of the movie Fantastic Voyage, where four men and a woman are reduced to microscopic size and sent in a miniaturized atomic sub through a dying man’s carotid artery to destroy a blood clot in his brain.  I remember it starred Raquel Welch (I forget who the guys were).  Isaac Asimov also did great things with the story when he wrote the novel from the movie.  He made sure it was as technically accurate as possible (the body bit, not the microscopic sub).  Somehow what I saw in the movie made a lot more sense to me that what I saw from my Pill Cam, but hey, that’s show biz.

Still, the small intestine was well worth a look.  Its where all the nutrients from the food we eat are absorbed and carried by our blood vessels to different organs, where they are used to build the proteins, etc needed by our body.  The non-nutritious stuff that remains undigested and unabsorbed passes into the large intestine (which contains several body bits most of us have heard of, including the colon, rectum, and anal canal).  Its extracts water and salt from the solid wastes, which then exit the building.  That area was also interesting to look at, though it was filled with stuff so I couldn’t see the walls.

I swallowed the Pill Cam at about 8:30am and returned to the doctor’s surgery at about 5pm to give back the receiver unit and have a quick check.  All was well. I handed over the unit, we had a quick look at the signal to confirm it had reached the bowel and I departed.

I had some vague plan about watching for the pill when it emerged into the light of day.  I looked a couple of times, but either it wasn’t there, or it was hiding.  Either way, I lost interest on the third day and stopped searching.  I don’t know what I would have done if I had found it.  Very limited market for used Pill Cams.  Replacing the battery could be tricky… Anyway, its gone now (or at least I hope is has).

So, all clear on the bleeding front; it must have been holding back the EPO for too long, as I suspected.  A lesson for next time.

Single needle dialysis! – ??

Joe (not his real name) has just been through what we all dread: an infected fistula, with complications.

Most of his fistula is in his upper arm, and over the last couple of weeks it became sore, larger and more difficult and painful to needle.  Joe started antibiotics, but unbeknown to him, it had also developed a clot that grew in size until the blood flow through it was minimal.  So, though he was on the machine for the same time each session, less blood being cleaned meant he was actually getting less and less dialysis and becoming less and less well.  Realising that it was not just because of the infection, he was referred to his kidney specialist for treatment.

The treatment for a fistula blockage can be complex and usually involves several steps:

  1. Joe goes to hospital where they to put in a permcath to replace the fistula.  A permcath is a flexible tube that is connected into a vein in his neck;  it has two inner tubes, one to take blood to the dialysis machine the other to return the blood to Joe
  2. The unit dialyses Joe via the permcath
  3. Once he is healthy enough, Joe returns to the hospital so that the vascular surgeon (the guy who created the fistula) fixes the problem by opening it up, cleaning out the blockage and closing it up again
  4. Joe then returns to the dialysis unit, where they continue using the permcath until his fistula is healed and ready to resume duty
  5. Joe then has the permcath removed.

However, Joe couldn’t get a permcath fitted immediately because his blood chemistry had fallen to a point made that made surgery unsafe (too much potassium, endangering his heart).  The only solution was for Joe to have more dialysis until his blood chemistry was OK to proceed.  Since not being able to dialyse properly was the problem in the first place, it sounds like Joe was caught in the crazy circle of Catch22.

But there was a solution: Joe would dialyse using the Single Needle Dialysis technique (What?  Sounds like a quiz question for medical geeks:  How can you dialyse with only one needle?)

Joe’s arm showing ‘Y’ tubing connected to arterial and venous lines

Joe’s arm showing ‘Y’ tubing connected to arterial and venous lines

The Single Needle Dialysis technique is a fiendishly clever system where only one needle is inserted into the fistula.  The needle is connected to a Y-shaped tube, with the tops of the ‘Y’ outlet connected to the arterial and venous dialysis lines respectively (see the picture of Joe’s arm).

Most of the clever stuff is then done by the Dialysis machine, which uses two pumps (rather than the usual single pump in traditional Two Needle Dialysis) and a holding chamber.  One pump is for the arterial line, the other for the venous line.  They operate in sequence over a cycle (a little like a car engine) this way (see the video):

  • In the first part of the cycle, the venous line is clamped shut and the arterial pump draws blood from the body, passes it through the dialyser cell and into the holding chamber.  It does this for 10 seconds
  • Then the arterial line is clamped shut and the venous pump draws the blood from the chamber and returns it to the body at a slightly faster pump speed, for a little under 10 seconds  (the faster the blood is returned, the less recirculation and the sooner a new arterial phase can begin)

Then the cycle starts again.

Single Needle Dialysis works so well that for many people (especially small people and children) recirculation is less than 10 per cent (the same as traditional dialysis) and there is minimal reduction in dialysis efficiency.  For this reason it is often used for children when they only need dialysis short term.  It reduces the level of invasion into their bodies, as well as the mental trauma.

Not many units around here can do Single Needle Dialysis, but our unit can (it is pretty simple using the new Gambro Artis machines), so Chris arranged for Joe to move to our unit for the treatment (hence the photo and video!).

After about two weeks Joe’s potassium level fell to where it was safe to have the permcath put in and his fistula surgery.  Now, normal dialysis via the permcath is going well and he is slowly recovering his health.  Once the fistula has healed, all will be back to normal.  Not a pleasant experience, but Joe is an upbeat guy the and worst is over.

Single Needle Dialysis is interesting.  It was first attempted 50 years ago, in Holland, using a single pump and a time-activated switch opening and closing a double clamp.  It was complex and difficult to set up and its use was limited to highly trained staff during emergencies.  Then in 1980, a couple of Belgian doctors developed a double pump system, the precursor of the one used for Joe.

In his 2013 paper, Dr Guy Rostoker, MD, PhD wrote that tests using the double pump Single Needle system showed “…that dialysis efficiency was at least as good as with conventional double-needle (DN) hemodialysis.   However Single Needle dialysis has failed to gain popularity, except in Belgium, the Netherlands, Luxembourg and recently Asia, because many nephrologists and dialysis nurses are reluctant to use it, even in cases of difficult fistula access, for fear of incidents or under dialysis.”

With the new generation dialysis machines like the Artis, the potential for Single Needle dialysis incidents is falling rapidly.  However, the potential for under dialysis is still there, since during each dialysis session, the blood is being filtered for only a little more than half the session time, because the arterial line is clamped each time the venous line returns our blood to us.  This implies that to move to a single needle, we would need either longer sessions or a session every day.

So I won’t be pushing to move to Single Needle dialysis any time soon, but I’m very glad to know it exists as a backup during emergencies.  And I think Joe is too.

Putting in your own dialysis needles

Firstly, many thanks to our intrepid BigD-ers, especially Carl, Cath, Henning, Debra and Adam for their needling stories, advice and suggestions.

This Briefing is a How To for putting in your own hemodialysis needles.  It covers five parts: Theory, Practice and Visualization, to help you understand the mechanics of needling,  Know Your Fistula, so that you know and understand the lay of your particular territory; and eventually, charged with the  skill and insight you need, it will be time for The Real Thing.

More power to your arm!

See how it’s done

Adam is one of the few people in my unit who put their own sharp needles (there are quite a few buttonholers) and he generously agreed to let me video how he does it.  As you will see, he has the smooth and well-practiced technique of someone who has been needling himself for many years.  Also note that his fistula is sufficiently well developed for him to put the needles in at a much flatter angle than is possible in a younger fistula.

The final word should go to Henning from Denmark (check out Henning ‘s post: Dialyzing at Home Without a Partner on the Home Dialyzors website):

Hi Greg, I don’t think I have so much to add when it comes to the technical aspect of doing your own needles.  But as a trained psychologist I have thought a little about the mental aspects and I truly believe that is where the most difficulties arise when people are considering doing it themselves. My best piece of advice may seem a little silly, but I do believe it is the best thing I can say to people when it comes to the mental side of cannulating:

Doing your own needles is like brushing your teeth; once you have learned it you will never have others do it for you again.

I am sure you can understand the comparison. Experiencing both sides of the treatment makes all the difference in the world.

All the best, Henning

Putting in Your Own Dialysis Needles

It won’t come as any surprise to most BigD-ers that there is a group of hardy souls in our club who prefer to needle themselves rather than rely on others to do it for them.

The largest part of this group is of course those who dialyse at home (who else will do it?).  But there are others (like me) who simply prefer the control it gives you, especially when you use the buttonhole method (which relies on a consistent entry angle and technique) or you travel and you don’t know how good the unit’s nurse or technician is at needling.

Chris, our unit manager is a real advocate of DIY needling, so it is a reasonably common practice among BigD-ers in our clinic.  I’ve been needling myself for about 15 years.  I still make the odd mistake, but mostly it has a happy ending.

Syd (not his real name), one of the new guys at our clinic has decided he also wants to put in his own needles too.  So Chris asked me if there was anything on this blog that could help.  There’s lots of good stuff, but nothing dedicated to helping people to needle themselves.

It’s time to fix that, so I am planning a new Briefing Sheet: “Everything you wanted to know about putting in your own dialysis needles but were afraid, to even think about it”.  Or something like that.

But I need help.  I’m hoping some of you DIY needlers out there can add your 2 cents worth to ensure it is a useful document.  Send in your stories, theories, techniques, tricks-of-the-trade, whatever you think will help a first timer.  Style is of no consequence; dot-points or paragraphs.

To get the juices flowing, here are a couple of initial responses when I asked around:

  • For me the first time was the toughest.  I knew the theory, but putting it into practice took more than a bit of moxie
  • Some nurses practice on oranges
  • Confidence is key
  • Much easier and less stressful with blunt (buttonhole) needles

Send staff as comments to this post, or to my email address (see the About page).

I’m hoping to put up a draft within two weeks.

Onward and upward (or downward, or sideways – wherever the fistula flows!)  Greg

Help redesign Peritoneal Dialysis

Christine from the University of New South Wales emailed me a couple of weeks ago with the following request:

Hi Greg,

My name is Christine Chau, and I’m a 4th year Industrial Design student studying at the University of New South Wales. I stumbled across your BigDandMe blog and I’ve been reading all your posts with great interest!

As my final year project, I want to redesign the user experience with peritoneal dialysis.  This is in regards to both the aesthetics of the machine, and how the user interacts with it.  I want to create less of a “stigma” if you will, about those on dialysis.  

I know that dialysis is a commitment, but I wanted to let others know that in the long term it’s actually beneficial and actually allows the user more freedom. Hopefully that makes sense!

I would love to talk to you or your fellow blog readers in detail about your experiences, journey and any insights you may have on PD.  For example, if it’s possible, and what it’s like  for a patient to start out on PD and transition into HD if it becomes more long term?

I’m wondering if you know of any people on PD willing to speak with me about their experiences.  Ideally, would you have any contacts in the Sydney area where I could maybe see a physical PD machine?  I know this is a big ask but I would be immensely thankful for any help in this area!

I think their input would be fascinating and imperative to my design. I would basically like to ask them a few questions, whether it is through email or over the phone – whatever suits their schedule!

Thank you for taking the time out to read this!

Kind regards,

Christine

I have swapped emails with Christine a couple of times, and while I don’t have any PD experience, I know there are a lot of BigD-ers out there who have.  If you are interested in being involved what could be a really useful and beneficial project, please contact Christine directly.  Her email address is: christine.chau@hotmail.com

Go for it!

Dialysis and Safe Preparation for a Colonoscopy

Over the past month my hemoglobin (Hb) level dropped unexpectedly from a powerful and red-blooded 13 g/L to a feeble and anaemic 8.5 g/L over a three week period.  The big question was: why?

The first thing that occurs to most medicos is that the drop has been caused by blood loss, if not from some obvious wound, then maybe for somewhere more subtle, like the bowel or intestines.  Blood loss via the bowel may not be in liquid form, but rather (not to put too fine a point on it) in the form of black poo.  “No black poo here” I said.  Still, there may be a leak somewhere else, so just to be sure, it was deemed time for both a gastroscopy and a colonoscopy.

A gastroscopy is an examination of the inside of the oesophagus, stomach and duodenum.   The oesophagus is the tube connecting the back of the throat to the stomach, also called gullet – which is a great word: “Snow White’s poorly chewed apple stuck in her gullet” – who doesn’t feel that in the back of their throat?).  The duodenum is a chamber at the base of the stomach where semi digested food from the stomach enters the intestines to complete digestion.

Gastroscopy: the big picture (thanks to HCF)

The gastroscopy is performed using a thin, flexible plastic tube with a tiny digital camera and light at one end.  The tube is passed through the mouth and allows the doctor to see if there is any damage to the lining of the oesophagus or stomach, and whether there are any ulcers in the stomach or duodenum.

A colonoscopy is an examination of the large bowel and part of the small bowel.

Colonoscopy: the big picture (thanks to HCF)

The colonoscopy is performed using a long, firm and flexible plastic tube with a tiny digital camera and light at one end passed through the anus.  As well as looking for sources of blood loss, it can be used to look for colon polyps (growths on the lining of the colon) or cancer of the colon, and to help diagnose symptoms such as unexplained diarrhoea or abdominal pain

In both cases, the gastroenterologist carefully guides each instrument in the appropriate direction (from the top down or the bottom up), to look around inside. The picture from the camera appears on a monitor to provide a clear, magnified view.

For both procedures preparation is required, one a little more dramatic than the other (detailed prep instructions are usually provided when you book in for the procedure).

For the gastroscopy, I was told not to eat or drink anything for up to eight hours before the test, so that my stomach was empty to allow the doc to see the entire area and to decrease the possibility of food or fluid being vomited into the lungs while I was under sedation (called aspiration).  That seemed pretty simple.

For the colonoscopy things are a little messier.  For this procedure, I had to completely empty my bowels.  This cannot be done without help, usually in the form of a purgative (a dose of salts and chemicals that evacuates the bowels).  The difficulty is that the purgative reduces everything to fluid using the water I usually carry in my body, to the extent that I could lose 1-2 litres of fluid in a few hours.

This is bad for everyone, because if this fluid is not replaced as it is lost, we can become dehydrated, often without realising it.  Symptoms can range from mild to major, starting with confusion, headaches, dizziness and weakness, getting progressively worse, to coma, organ failure, and even death.  Dehydration during prep is more common than you imagine.  I know several people who were put on drips as soon as they arrived for the test because they arrived dehydrated.

For us BigD-ers, there is an added danger: even mild dehydration can cause our fistula to clot.

So the trick is to balance fluid loss with intake.  Normally I try not to get more than 1.5 to 2 kg over my base weight.  That means I can drink 1 – 2 litres of fluid between dialysis sessions and keep well.  During the last day before the procedure I was losing at least that much in a few hours, so I needed way to replace the fluid lost each time I went to the loo (which was often).  This is where my bathroom scales came in handy.  As I dashed to the toilet, I would jump on the scales and weigh myself.  After the action blew over, I would weigh myself again, work out the difference, and then drink at least that amount of fluid.  eg, if I lost .25 a kilo, I would drink 250 -330ml of water; half a kilo, 500-plus ml and so on.

The result of this Toilet-Scale Dance was that I weighed about a kilo above my base weight when I was wheeled into the theatre, which I think was just right.  All went well.  My body was well prepared; I slept like a baby (I quite like that feeling of unconsciousness rolling over me as the anaesthetic takes over!).  I woke up about 90 minutes later, feeling fine.

A little later the gastroenterologist arrived and told me they had found nothing untoward.  Though as a final test, I will be asked to swallow a camera pill to check out the so far unexplored central regions between my duodenum and the small bowel.  I’m looking forward to that experience.

My thinking on the matter is that I am just over-sensitive to changes in Aranesp (synthetic erythropoietin – EPO) used to increase my red blood cell levels).  My doctor stopped my Aranesp as soon as my Hb was found to be 13, and maybe it was stopped for too long.  This may well be the answer, especially if pill-cam comes up clean (so to speak).

In the meantime, if you have a colonoscopy scheduled, get ready to learn the steps of the Toilet-Scale Dance and stay well.

The Big Red Kidney Bus – Holiday Dialysis on the Move

As any reader of the blog knows, I’m a big believer in holiday dialysis.  So it is with much delight that I can report that there’s a new Holiday BigD player on the block (near you).  The world’s first Big Red Kidney Bus is taking a complete dialysis service (three chairs) to BigD-ers in holiday spots around Victoria, where no dialysis has been before.

Official launch outside Victoria’s Parliament House – Courtesy KHA

The Bus was launched Officially outside Victoria’s Parliament House a week ago (13 March), and it leaves on its maiden voyage this Saturday at Traralgon at 10:00 am from Traralgon Farmer’s Market (outside St Michael’s Primary School Hall) in Church St (incidentally, just across the road from where my Grandparents used to live and I used to holiday!).

Dialysis machines are portable – these are in lock down, ready for travel – courtesy KHA

The story of the Bus is inspiring, and nicely recorded by Jo Fairbairn, Kidney health Australia Education and Health Promotion Manager and Professor Peter Kerr Director of Nephrology Monash Health:

Big Red Kidney Bus Background

A wonderful gentleman, Mr Vince Tripodi from Traralgon (deceased) who was a dialysis patient at Latrobe Valley Regional Health Dialysis Unit wrote to the Kidney Health Australia CEO Anne Wilson in January 2011 with this wonderful initiative to provide Mobile Holiday Dialysis.  

This was an historic moment.  The Big Red Kidney Bus is to provide Mobile Holiday Dialysis at Victorian Holiday destinations where it will stay for 6 weeks at local caravan parks.  People will book in to their own accommodation or stay with family and friends and they will be able to access dialysis on the Big Red Kidney Bus, which they need to do 3 days a week for 5 hours a day to stay alive.  

Vince was not alone in his quest for this to happen and dialysis patients Suzi Picken, Bruce Bremner and Peter Maxwell worked with him.  Sadly Suzi and Bruce have also passed away, but all three dialysis patients knew the bus was coming and they were thrilled.

The rationale of the group was to create the opportunity for families with someone on dialysis and individuals to have possibly their first ever holiday. They just cannot get away because there are so few chairs available and many holiday destinations do not have a dialysis unit.

Kidney Health Australia raised all the money to renovate a donated school bus (by Ventura Bus Lines) and many generous financial donations and in kind donations have been received especially from Trusts and Foundations, the Traralgon community and the Bus Industry, including:

  • Monash Health is providing two nurses and one renal technician and to manage all the clinical and medical aspect of this “innovative” mobile holiday dialysis unit
  • Fresenius has donated all the dialysis equipment
  • The other amazing major community partner is Latrobe Valley Bus Lines who will provide drivers to move the Big Red Kidney Bus every six weeks to another holiday destination. They will also park the bus in their Morwell Depot in any off the road time. Latrobe Valley Bus Lines will provide free servicing and maintenance which is a huge donation to this important program for people on dialysis.
  • The Bus Industry Australia wide and the community in general has totally embraced the Big Red Kidney Bus. Please share this information with people on dialysis you may know.

How is Works

  • Australians on haemodialysis in a hospital dialysis unit, in a satellite unit or on home haemodialysis will arrange and pay for their own holiday accommodation and travel arrangements at a particular location in Victoria
  • The Big Red Kidney Bus will be located at Camping Grounds at Victorian holiday destinations
  • Destinations will be decided based on consultation
  • It is hoped that the locations for the Big Red Kidney Bus will be advertised one to two years in advance once it is up and going after 12 months
  • It will stay in each location for approximately 6 weeks. It will be stationary during this time and there will be no bus driver available
  • These holiday destinations will have no dialysis unit in the local area
  • If there is a dialysis unit in the area, the Big Red Kidney Bus Project (KHA and Monash Health) will have communicated directly with them and ensure that the Big Red Kidney Bus will be adding value to the existing dialysis service and not in any way competing with it
  • Not all existing dialysis units have holiday chairs available
  • A Big Red Kidney Bus icloud booking system will be developed and managed by Kidney Health Australia. People will be able to Express Interest in accessing the Big Red Kidney Bus on line and Monash Health Project Renal Nurse Manager will convert the expression of interest to an accepted booking on line, or reject a booking that does not meet the requirements
  • KHA and the Project Nurse will assist all people who do not use the internet with a telephone service, converting it to an on line booking while they are on the phone. Where possible a friend or relative’s email address will be required for all confirmation
  • An external independent evaluation consultant has been appointed by KHA to evaluate all aspects of the first 12 months of the Big Red Kidney Bus Project including Quality of Life outcomes.

(See here for their full article.)

While the Big Red Kidney Bus is the first mobile holiday dialysis unit, it is not the first mobile dialysis unit.  As this excellent paper shows, there are trucks, buses, camper vans and caravans (and holiday homes) around the world keeping us BigD-ers alive and kicking in some surprising places.

For a lot more inspiration and some great photos, go to Kidney Health Australia’s Big Red Kidney Bus page and Much more than just a big red bus.

Planning a Dialysis holiday: Part 2

A few weeks ago Yang wrote and asked for some advice to help her better plan and prepare for her trip from New Zealand to Hawaii.

Of course, planning is the key and involves five areas: arranging dialysis, getting there, having a place to stay, managing meds and doing stuff.

Arranging Dialysis

As BigD club members, this is always step 1.  No point going anywhere if I can’t dialyse when I get there.  I wrote about this about a year ago: Finding a SAFE Holiday Dialysis Unit, covering how to find a safe unit, how to contact them and dealing with the cost of treatment, etc.  Not much has changed, except that there seems to be more units offering holiday dialysis.

A word about selecting session times.  After so many years on dialysis, I think of myself as being like a koala bear.  Koalas have almost no capacity to store up food or energy, so they have to eat regularly and often to stay well.  Life on BigD is much the same for me.  I have no capacity to clean my blood except dialysis, which I do 5 times per week: Mon, Tue, Wed, Thu and Sat, for three hours per session.  So as long as I follow my routine I feel fit and healthy.  If I miss or delay a session I feel progressively less well.  Once I have the session, I feel well again.  So wherever possible when I travel, I like to stick to my routine.  I recommend that you do the same.  It may just make the difference between an OK holiday and a great holiday.

Getting There

There are two schools of thought about the trip: it is the no-man’s land we have to cross to get from life-as-usual to life-on-holiday, or it is an integral part of life-on-holiday, to be experienced and engaged with from the moment the journey begins.  We subscribe to the second school.

So, if it’s a long-haul flight, we do it during the day.  No matter how well you sleep on a plane, flying through the night disrupts your normal sleep, and you pay for it the next day.  Better to stick with your usual sleep pattern and take your time.  We certainly arrive feeling fresher, and all the better for all those free movies and the snacks we wouldn’t eat at home.

When it’s a driving holiday, we also tend to take our time.  We rarely drive straight from A to B.  We like to stop and look at things along the way.  And drink coffee in strange coffee shops.

A Place to Stay

Find a place near dialysis.  If there is a flash place an hour away and an OK place near the unit, go for OK.  Many times we have done the reverse and come to regret it.  One time when we went to Port Douglas for a holiday, the closest dialysis was 40 minutes away in Cairns.  Not only did it add hours to each session, but the machine blew up during one run and it took 3 hours to fix.  It was too far to go home and come back, so we spent 8 hours in Cairns for a 3 hour run.  On another holiday in London, we stayed at Shepherds Bush and I dialysed at Forest Hill, at least an hour away.  And on our China holiday last year, we stayed an hour away from the hospital (though that was because we were part of a wedding party).  Fast learners we are not.

Life is too short to spend it doubling your precious holiday time in dialysis-bound traffic or on a dialysis-bound train.

Managing Meds and bits

Foreign countries find it difficult to cope with people who need prescription meds quickly.  I always take along an extra few days’ worth of meds, just in case.  Some units expect you to bring your own Heparin and all expect you to have your own EPO/Aranesp.

I have friends who have been delayed far from home unexpectedly.  Having backup meds is the difference between the delay being a nuisance and a total stress out (or worse).

Since I use the buttonhole technique, I usually take at least one extra set of blunt needles.  Not all BigD units stock them and it is not unheard of to stuff up a needle and need another.  I also carry extra scraper needles to remove the buttonhole scabs (the right scrapers can be hard to get in an unfamiliar unit).

Doing Stuff

Don’t forget the reason you have taken all this trouble: to have a good time and to see and do things you can’t see and do at home.  Check out the “10 best things to do” at your holiday destination on the web.  Choose the highlights that suit your tastes and go for it.  And allow time for that other rarity: rest and relaxation with a book, the papers, a movie, or the close study of your eyelids.

Disabling the email on you smart phone is also a good idea.  They’ll be there when you surface a few days later.

Bringing it all together

Arranging Dialysis.  Last week Julie and I took a short break at Rosebud, about 75 km (45 miles) from home.  We planned the break in January, about eight weeks before.  Many friends at dialysis have raved about the Rosebud unit, so we thought it would be good to check it out.  It’s a pretty busy unit, with lots of locals and a constant stream of holiday dialysers.  Chris, my Unit Manager contacted them and after a bit of negotiation we settled on Thursday 27 Feb and Saturday 1 March.  These days fitted in with my usual routine, so that was one less thing to disrupt the flow of good Karma that I rely on to stay party-fit.

The Rosebud unit turned out to be all it was talked up to be and more: clean and modern, friendly and skilled staff and most accommodating.  I can understand why it is so popular, and I look forward to joining the holiday queue in the future.

Getting there.  We drove to Rosebud on Wednesday after my usual BigD session at my unit.  It took about two and a half hours, because we stopped for lunch and to visit Sullivan Bay, in Sorrento.

Sullivan Bay was there that two ships, HMS Calcutta and Ocean, arrived from Portsmouth with 300 convicts, marines, civil officers, free settlers wives and children in January 1803.  It was the first attempt to settle Europeans permanently in what is now Victoria (and just the second Australian settlement after Sydney Cove).  There is a very informative monument and display, but no artefacts of any kind.  The settlement lasted only seven months, abandoned mainly because of poor soil and lack of fresh water.  It is famous for several things: one of the convicts, William Buckley, escaped and lived for 32 years with the aboriginal population on the other side of the Bay; six others were shot or died escaping; one of Melbourne’s founders, a very young  John Pascoe Fawkner was one of the passengers, with his mother and convict father on the Calcutta.  It was another 22 years before Melbourne was founded permanently.

A place to stay.  We chose an OK motel two minutes from the Rosebud dialysis unit.  Bliss.

Managing Meds and bits.  I planned for only two BigD sessions, but took a backup set, plus scraping needles and Heparin.  As it turned out, I didn’t need the blunt needles, but I felt better having them with me.

Doing Stuff.  Julie did all the planning for this one and she did a great job.  We went to the magnificently wild and spectacular Cape Shank, walked the boardwalk to the shore and climbed up the lighthouse steps.  We exercised our legs on Millionaire’s Walk along the coast from Sorrento to Portsea (looking at all the pretty, and very private, houses), our taste buds at a couple of very swish wineries and a cheese maker and soaked up the serenity in some beautiful formal gardens.

BigD holidays are not easy, but with a little care and planning, they can be delightful.