Guest post: The Big Red Kidney Walk

Hi everyone.  Thanks for your messages and good wishes.  I am certainly on the mend, but it is an aggressive little bug(ger), and I think I have another week or so before I’m back to normal.

So, in the interim, a guest post!

The Big Red Kidney Walk is on again on 14 September, around Australia.  Kidney Health Australia put on the Walk every year.  It is designed to help raise awareness and funds for kidney disease across Australia. It is a great event that brings the kidney community together for a family fun day where people can meet, go for a walk or run, enjoy a BBQ and entertainment, and generally catch up.

Tony started dialysis at my unit about 10 months ago.  He is married to Kim, and they have decided to get into the walk in a big way.  Why?  Here’s Kim.

My husband is the Tony in “Team Tony” and he has been diagnosed with kidney cancer twice. Just before Christmas in 2006 he was hit by a car and routine scans at hospital following the accident found cancer in his left kidney. The kidney was removed, there was no need for radiation or chemo and once he recovered from the surgery and a fractured pelvis our lives continued on as normal.

However in September last year he was diagnosed with kidney cancer once again following routine tests for another health issue.  We were devastated. Tony had his right kidney removed and we were plunged immediately into our new life of dialysis, adjusting to a new diet, reduced fluid intake, etc all while he was slowly recovering from surgery and his body was adjusting to suddenly having no kidneys at all.

All of this was made so much easier with the support of the magnificent nurses and staff at Diaverum Diamond Valley Dialysis Clinic especially the wonderful Clinic Manager Chris van Bakel. 

The care Tony receives at Diaverum is incredible and with their support he manages his dialysis and has resumed full time work as a Project Manager. We cannot thank them enough for making this very difficult time for our family so much more bearable.

It is from this exposure to all the kidney related issues and seeing the people both young and old who rely on dialysis to live that has prompted our involvement in the walk.  We want “to give back” and show our support for the carers, nurses and all the other families who on a daily basis support their loved ones who are affected by kidney health issues.

My family wanted to participate in The Big Red Kidney Walk not only to raise money for this wonderful cause but also to raise awareness of kidney health issues. There are so many great causes to support but we believe that kidney disease and other kidney related health issues are “forgotten” when compared to the massive support given to other causes.

So on Sunday 14 September Jack (17), Sarah (13) and I will be pounding the footpaths of Melbourne just happy to be there and have Tony walking along side us.  To be able to fundraise for Kidney Health Australia at the same time is just the icing on the cake!

Kim

Kim is giving us a powerful message, one we hear many times on this site: dialysis is not the end of our world.  Our life does change, but with the right dialysis and a good support network, our lives are still our own, and we can still work, play, travel and live it to the full.

Unwell-come break

Julie and I went on a mini-holiday about two weeks ago to sit in the sunshine.  Bad move.  Unfortunately, it was Nasty Bug Central, and we both caught some kind of flu.  My immune system is wimpy at the best of times, so I have been laid low, for the last two weeks, first at home, then in hospital.  I came home yesterday, still not quite right.

Throughout, Julie has also been unwell, so rather than at least being made a fuss of, she has had to look after me, visit the hospital, etc.

More news when we stop coughing and start smiling.

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.