Kidney disease: meant-to-be or dumb luck? Part 2 – DNA

One of the (many) cool and wondrous benefits of being alive in the 21st Century is our ability to look deeply into our own bodies, right down to the very building blocks of life, our DNA, to glimpse of our personal program for life.  Another almost-as-amazing benefit is that it costs just $99!

I was keen to check it out to see if my DNA had my kidney failure pre-programmed or if it was just dumb bad luck.

Getting started

I had read quite a bit about 23andMe and had long been keen to see what it had to offer.  So I clicked buy and began my journey.

But first I had to read and confirm the paperwork, and there is plenty of it.  But it was not your usual, “Take it or leave it” small print.

For example, the Family Considerations page is headed What unexpected things might I learn?  It begins: Looking at your genetic data might uncover information that some people find surprising. This information can be relatively benign and even amusing. At other times, the information you learn can have profound implications for both you and your family. 

The Terms of Service has the usual legal guff, but also spells out the risks (Once you obtain your Genetic Information, the knowledge is irrevocable…); it also suggests things to consider and addresses the fear of finding out, which are unique to this service.  The Privacy Statement is similarly beefed up with detail to address the security fears of anyone sharing their most intimate personal information.

The Consent Document was my formal confirmation that I understood what I was signing up for.  I took a deep breath (the first of what turned out to be several as my journey progressed) and clicked Continue.

I’m in!

I registered and purchased a Spit Kit, which arrived a few weeks later.  As instructed, I spat into the tube provided and sent it back to them (post-paid).  A few weeks later an email arrived saying my report was ready and available in my online account.  I logged in and wallah!

23 Home

The HOME page shows a summary of what my DNA says about me, divided into various topics.  The first four the panels displayed ancestry stuff, which is obviously a popular subject – “Where did I come from?”  Since my primary aim was to see if DNA is responsible for my kidney failure, I found the HEALTH OVERVIEW panel and clicked on it and found the motherlode: 263 findings about me, divided into health risks, traits, inherited conditions and drug responses.

23 Health results menu - Copy


This is a big area.  All the findings are measured in detail and more detail, with study references, explanations, etc. against a typical/average healthy person’s DNA.  There’s a lot to know, but the trip is absolutely worth it.

For example, under Risks, there were 122 possible risks for me developing certain health conditions based on my genes, or that could be influenced by environmental and lifestyle factors.  The risks were divided into four categories:

23 Health risks 1

23 Health risks 2

23 Health risks 3

Locked Reports is a special category.  For serious stuff like Alzheimer’s, they don’t just show the result, I got a choice as to whether I wanted to know (this knowledge could also affect my family).  Before showing the result, they provide some background (a video) to the test, the disease and the implications of finding out.  After some careful thought, I took (another) deep breath and looked at the result.

The problem DNA combination often present in Alzheimer’s patients NOT present in my DNA.  Phew!

So, was my DNA programmed for kidney failure?

First the Risks

I looked through my 122 Elevated Risks, starting with the 27 highest.  At the top of the list was Type 2 Diabetes 2 (32.6% higher than average).  This definitely can, and often does cause kidney failure.  However, I don’t have Type 2 Diabetes, so no obvious DNA trigger there.  In fact, none of the other 26 elevated risks could be seen as triggering my kidney failure either.  (Though interestingly, my risk for Gout was 30.6% higher and for Restless Legs 2.5% higher.  I have both of these, but they developed after my kidney failure.)

I scanned the 31 Decreased Risks.  None are related to kidney failure, and they are all less than the average person for me anyway.

Finally, I checked out the 63 risks where I rated Typical Risk level: There were four kidney-failure related risks: Chronic kidney disease, Kidney disease, Kidney stones and Kidney cancer, and I was rated typical on all of them.

So on the Risks front, my one identified possible DNA trigger didn’t go off.

Second, Inherited Conditions

Of the 53 possible, the only real candidate was for genetically-related hearing loss.  No kidney failure triggers here. (I can still hear Ok so far.)

Third, Traits

Of the 63 traits, most were pretty accurate though not World-changing (as predicted by my DNA, I do have red hair, wet ear wax, brown eyes, I can smell sweaty people and, surprise, partial resistance to HIV).  But no news on an inbuilt tendency for kidney failure.

Four, Drug Response

Of the 25 responses listed, among others, I have increased sensitivity to Warfarin, a reduced Hepatitis C treatment response, I metabolise caffeine quickly (reducing my heart attack risk) and higher odds of becoming addicted to heroin.  Interesting stuff, but again no news on an inbuilt tendency for kidney failure

The Answer

Based on the latest available DNA tests, there is no evidence that my DNA was programmed for kidney failure.  It was probably just dumb luck.  This is very good news.

While some brilliant new future test may eventually prove otherwise, right now I take great comfort in this result.  Mainly because If it’s not in my DNA, it’s not in my kids’ or their kids’ DNA.

So far that has proved to be the case.


ps: A little more about DNA

DNA maps vs Google maps

Until I got to this point, I hadn’t thought that much about the process of DNA analysis.  I suppose I assumed that my DNA map was like a Google map: all my health and ancestry would be laid bare.  But it is of course much more complex.  My DNA map is just that: a huge, detailed, complex picture of my genetic structure.  Finding out what each gene and gene combination means is a whole different kettle of fish.

It’s as if Google served me up a blank city map, showing every place, street, park, building, community and ant hole, but without any annotations, or written information of any kind (in Melbourne that’s 7,673 sq km – 2,962 sq miles of blank map).  The map would be a huge advance on nothing; but it would take years to fill in the names of places, streets and ant holes before it became useful.

That’s where scientists found themselves in April 2003 when the entire human genome was mapped.  Adding meaning to the map is of course hugely more complex than our blank Google map, and is still very much a work in progress.  Mostly they do it by working backwards: mapping the DNA of groups of people with various health problems, traits, inherited conditions, drug responses, etc and comparing their maps with people without those things.  The genes that vary in some way might then have some role in causing or triggering the problem.

23andMe collected and continues to collect new parts of the map from reputable studies around the world.  They also do their own studies via member questions and surveys on topics like migraines, asthma, stress, vocabulary, reactions to specific drugs, family longevity, etc.  They then match their findings at a DNA level, look for trends, and fill in a little more of the map.

pps: DNA Ancestry. 

The 23andMe ancestry stuff is even more amazing than the health stuff.  Instead of comparing DNA details, they link millions of archaeological DNA details and findings to create our personalised DNA family history.

It’s a real page-turner (after all, what can be more fascinating than the thousands year history of you and me?)




Christmas snippet

Hi all you BigD-ers and supporters.  Have a great Christmas!  I hope the day brings you joy and something nice to eat.  This post is just for Christmas.

This post is just for Christmas.

A Christmas Story

As part of my Christmas, earlier this week I had an interesting experience.  I went for my usual Christmas haircut at my usual barber.  The guy settling into the chair before me was an elderly gentleman who has owned one of the local coffee shops since Adam was on the breast (hmm, not sure who’s breast that might be…).  Anyway, I was surprised to see him there, because ever since I’ve known him (not personally, just to look at), he’s worn a very cheap wig plonked on top of his head.  It is vaguely human-ish hair, vaguely grey, almost matching the long wispy hair around his ears and the back of his neck.  But it is plainly a wig, and one with a mind of its own, rarely even trying to sit straight and hair-like. It sits more like a hairy hat, worn at a jaunty angle in a devil-may-care attitude.  Most people who visit his shop are used to it to the extent they unsee it most of the time.  However, turning up at the barber’s seemed to me to be one step too far.

Not so for the barber, who was in a far more advanced state of unseeing.  He sprayed his head all over with water mist and started combing.  Same as usual? says he.  Yes, says coffee shop man: Just clean up at the back and around the ears.  So he did; not once clipping or nudging the rug covering his cranial bowling ball.  A few minutes later, with newly short back and sides, he paid and departed.

I moved into the chair briefly meeting the barber’s eye.  No one said a word.

Every village has its personalities.  I’m not sure if ours is the coffee shop man or the barber.

My Christmas Theme

I decided to buy something a little different for the adults in our family this year.  Early this year I worked through a MOOC, a Massive Open Online Course on the Internet, called Fantasy and Science Fiction: The Human Mind, Our Modern World.  It was six weeks long and each week involved reading a book a week, watching a lecture, writing a short essay and marking two other essays.  I enjoyed it immensely.

And one of the many things I learned was that many of the classics are classics for a reason.  Their problem – or my problem – is that they are so well known, turned into movies, plays and otherwise used and referred to, that I thought knew them, and so often didn’t bother to actually read them.  Some I had read, but others like Alice in Wonderland and HG Wells’ The Island of Dr. Moreau and The Invisible Man, I had ignored.  So much pleasure missed needlessly.

If it can happen to me, it can happen to others.  So this Christmas I decided to give everyone a classic.  Not just any classic, but those based on a formula: it should be a classic in English, I had to have read and liked it, it should be a hardback (no ebooks or paperbacks) and the actual book should be second hand – I love the feel and spirit of books that others have read before (and scribbled notations in the margin too if possible).  In short a working member of our Classics heritage.

I bought most online, from Australian (Brotherhood Books) and US (Better World Books) second hand charity bookshops.

On the day, I got a lot of puzzled looks, but after some fast talking, things have worked pretty well.  I think most receivers will read theirs, and if they like them, maybe others too.  Books I gave include (authors are obvious): A Tale of Two Cities, Dracula, Dr Jekyll and Mr Hyde, Treasure Island, Northanger Abbey, Lord Jim, Something Wicked This Way Comes (Ray Bradbury), Catcher in the Rye, The Adventures of Sherlock Holmes and Alice in Wonderland.

Well, That’s my Christmas snippet for this year.  Hope you have/had a cool Yule!

Kidney disease: meant-to-be or dumb luck? Part 1 – Chance

I have often wondered if my kidneys were programmed to fail when I was born, or if they were simply the victim of a rough and tumble world; or maybe a bit of both.

I know, everybody is different, but maybe my case could be useful for others.

I had some kind of blockage that stopped urine from leaving my left kidney, which eventually destroyed it.  It happened when I was 19, full of beans, and in the Navy.  I was on a training ship cruising Storm Bay in Tasmania (yes, it was stormy) at night in rough seas and I fell off balance against a chart table with sharp edges.  Bruised and sore, but thinking no more about it I carried on – until my ailing kidney stopped me in my tracks.

When the damage first revealed itself (as pain, pus and general misery), my doctor said: Well at least you have a spare on the other side.  But after looking more closely, I discovered for the first time that my spare was missing –it had failed to grow when I was young, so my problem was bigger than first imagined.  Rather than removing my badly damaged kidney and letting the other take over, the surgeon did his best to repair it, but it was obvious I was lining up for dialysis sometime in the near future.

This triggered my first backward glance: if I had known I had only one functioning kidney, maybe I would have lived my early years quite differently: maybe in a safe, non-contact world, spending the odd day wrapped in metaphorical cotton wool, protected from the rough and tumble by notes from my Mum.

If I had known.

But that would have meant quite a different childhood and adolescence: no Robin Hood roughhouse, Samurai swordfights or Ninja jumps from trees and balconies; no defending myself (however lamely) against the current bully, no Aussie Rules football, basketball or Rugby; no boxing.  No Navy.

Hmmm.  If I had known, maybe I wouldn’t have enjoyed my early years as much as I did.

But then there’s the other side.  If I had lived in a cocoon, maybe I’d still have my working kidney.  What would I be doing now?  Besides not writing this post, I have no idea.

Also, after my kidney failed many good things happened: the best being that I met Julie, who was to be my wife of 41 years (so far).  She was the ward nurse looking after me when I woke up from kidney surgery. While my life changed abruptly, it was not all bad.  Yes, I was discharged from the navy, which disappointed me greatly; but we also married and I couldn’t imagine a better life than the one we’ve had.

Now years later, here I am alive and kicking, sitting at this keyboard getting philosophical.

So, was my journey down End Stage Renal Failure Alley the result of a high momentum argument with a chart table or was it the result of a glitch at birth, triggered by that argument? (Either way, the chart table was not an innocent bystander.)  Then, thinking about my kidney glitch, was it just a random hiccup as my body formed in the womb, or was it a bug in my DNA code?

If it was a random glitch, so be it.  But if it was a DNA bug, could it be passed on to my kids (and their kids, and so on)?  While I can do sweet nothing to change it, I would still like to know.

DNA analysis is pretty cheap and easy, so why not have my DNA analysed and find out?

How?  That was about the time I heard about 23andMe, a company that analyses people’s DNA.  Just what the doctor ordered (so to speak).

(I later found that while a DNA profile is an amazing thing, knowledge about causes and effects in our DNA it is still evolving, so not every question is answerable – yet).

So, for a few hundred dollars, I signed up for a journey of exploration around my own DNA.

Part 2, how that worked and what I found about me, my health, my family (including new relatives) and my ancestors will be in my next post.

Living life to the full on dialysis – Travel!

Living a full life on dialysis is not just for a lucky few that somehow stay healthy and energetic between BigD runs.  It’s a state of mind.  Just because I dialyse doesn’t mean I can’t do things.  Simple things like getting out of the house for a while: going for a walk or a coffee with a friend, going to a movie or the football. or walking the dog.

Then for a little more adventure, maybe go somewhere out of town on a non-BigD day: to an art gallery or festival in the country, or a shopping trip somewhere new, or a boat or train trip to see the sights along the way, with a lunch or afternoon coffee as a reward when you arrive.  Maybe catch up with some family or friends you don’t often see. If you are a senior, your state government may help: in my state, Victoria, all seniors get two free return train tickets a year for anywhere in the state.  Most others do the same, that’s one less hurdle.

It’s a small jump to extend your trip overnight into a mini-holiday and arrive home in time for BigD the next day.  Stay somewhere different: a Bed & Breakfast (try out Airbnb?), a flash room in the centre of town, or a hotel by the railway station, on board a boat, in a tent (well maybe not in a tent…, unless you are Glamping).  Have a complete change of scene.  It’s fun to anticipate arriving and settling in, (and even more fun to arrive home again).

Once you get the taste for it, it’s not a big leap to arrange for holiday dialysis while you are out of town.  Our world is set up pretty well for us BigD travellers.  While you can’t do it on the spur of the moment, it only takes a little planning to be able to dialyse with a new view (of the beach or the mountains, or wherever) with new and interesting fellow-BigD-ers and unit staff for a day or a week or more.  While you are not there just for the dialysis, it can be surprising just how differently units can operate, and you are never too old to learn new tricks.

HED blood line clamp

HED blood line clamp from Wagga Wagga Renal Unit

(I dialysed in Wagga Wagga recently so I could attend a friend’s birthday.  It is a great unit, very friendly and right up with the latest.  And I unexpectedly went home with a flash new green frog line clamp, which I now use to impress my old fashioned non-green frog line clip using friends at my home unit.)

Of course, once you have got the hang of holiday dialysis in another town or city, the next step is a little grander: an overseas holiday dialysis trip.  While these take more time to arrange, you get so much more to enjoy.  You can holiday almost anywhere: all the big cities and holiday resort of the world, from London to Beijing, from New York to Melbourne and just about everywhere in between.  A short break every day or two to dialyse, and you’re back into the action, for the next tour, camel ride, church, mosque or palace or special event on your bucket list.

It’s not like you will be Robinson Crusoe.   Thousands of BigD-ers get out and about every day.

Here’s just one of thousands of examples (with more to come).

Peter Flack lines up at the crease for Australia in the UK – again

Back in October 2013 ago I wrote about Peter, a sprightly 73-year-old on dialysis, playing cricket for Australia in the over-70s cricket squad that toured England.  Now he’s back!

At 12.05 am on Saturday July 4 MY wife Denise and I we flew out of Tullamarine courtesy of Malaysia Airlines to start our 27-day tour of England to play 12 games of cricket for the baggy greens.  Planning the accommodation and what to do on rest days was great fun, but making sure I could dialyse near each venue took a great deal of organising (thanks Chris at Diaverum).  Over the trip I dialysed four times at Diaverum Forest Hills, once at Salisbury Hospital, twice at Cambridge Hospital, once at Wells-next-the-Sea and twice at Kidderminster Renal hospital. 

Pick the man on dialysis. Peter and the rest of the team (back row 3rd from the right)

Pick the man on dialysis.
Peter and the rest of the team (back row 3rd from the right)

For those that follow the great game, we won eight and lost four.  The Over 60 and Over 70 competition is very strong in all areas of the U K with many of their players taking part in up to 60 games per season meaning they are all in good form and quite fit, so we did well.

Like every trip overseas, I had adventures par excellence, including being caught in a soccer crowd, being rescued by the Police and driven to the hospital in a Police car; taken to the wrong hospital for treatment and being rescued by a Pakistani cricket tragic impressed with my Australian Cricket Team jumper; and most momentous, being carried from the field with concussion after diving to save a four and splitting my head open when I fell on my glasses.  I was declared unfit for a couple of the games and completed the tour with a black eye.  What a triumph.

The arrangements of my treatment as arranged by Chris fitted perfectly with our schedule and without my injury would have enabled me to participate in every game and I say a BIG thank you.

Would I go again — without hesitation!

Peter’s adventures (especially the concussion) are perhaps a bit out of the ordinary for most BigD travellers (but probably par for the course for someone representing his country playing cricket).  But adventures, mishaps, surprises and general serendipities are why we travel.  And on the road we are adventurers like everyone else, except we dialyse along the way.

Now, maybe, it’s your turn!

For some ideas and lots of travel (and other) resources, go to the shiny new Kidney Health Australia website.  It’s excellent.

Getting fit and staying fit on dialysis – bit by bit

It is pretty well accepted all over the planet that being fit helps you to enjoy life more and is a major driving force for a longer life.  Not just BigD-ers; everyone.  And the two biggest challenges to our fitness are getting fit and staying fit.  We all face the same problems getting fit.  But staying fit can be a little trickier for people on dialysis.

This is because those of us who have made the effort to get fit between dialysis runs can get our legs cut out from under us by a spectrum of medical dramas that pounce on us from nowhere.  Dramas that people with full kidney function would either barely notice, or not need.

I am sure my example is typical.

In my early, sunny, blue-sky days before dialysis I was in the Navy.  I boxed and played rugby, and by the measures of the 70s, I was fairly fit.  Those measures were pretty sophisticated: I could run a fairly long way and do enough push ups to impress myself (though if others were, they didn’t say).

Then one and a half of my kidneys went south and my resulting 20-year decline in kidney function was matched by a gradual decline in running and exercise.  By the time I started dialysis, my fitness and any concerns I had about it were at ground zero.

After six months of dialysis, I felt better.  I’d begun exercising and running and was strong enough to handle a transplant (donated by my wife).  However, despite heroic bouts of and with anti-rejection drugs, “our” precious kidney became infected, and after three months was removed.  At that point, I went back to dialysis, and to fitness ground zero.

As everyone who has been there knows, recovery is not quick from ground zero.

It took about a year to recover, by which time I was taking short jogs, initially around the bed, gradually progressing to around the block.  Over the next few years, regular gym and running sessions got me to a point where I was strong enough to try another transplant should one come along.  It did, this time from a deceased donor.  However like the first one, my ungrateful body rejected and damaged it over the first couple of weeks.  But it still sort-of worked and I cherished it until it died after three years.  By then I was bloated and exhausted, so it was back to BigD and to fitness ground zero.

It took another year to recover.  This time I wasn’t up for something very physical.  I needed to get fit again, but I was over the gym: I needed a fresh way to fitness.  Julie suggested Pilates, which is a gentler approach to regaining flexibility and some muscle tone.  It was a great and it revived my Mojo.  I didn’t mind that I was weak and creaky; I knew I was on the way back!  After six months, I was ready to show the world (Ok, just the gym) my new body, and maybe take on a few wimps.  So back I went (but no more running, my knees refuse to play).

Cue to the modern era.  Julie and I have been going to the gym off and on (between my various bugs and hospital stays) for about six years.  But over the last year, unwittingly I started to slow down (my joint were giving me stick).  So I gradually swapped the weight bearing exercises in favour of cardio (mostly the cross fitness machine) and stretches and bends.  Still good healthy exercise, yes?.

No.  I was kidding myself.  Things were not improving: my body was seizing up, I couldn’t do any push ups, my sit-ups were wimpy and I ran out of breath walking to the local shop.  Then one day the thought hit me: dread of dreads, was I becoming a girly-man?

Then the gods of fitness and enthusiasm intervened – twice.

At the gym

One of the trainers at the gym rang me out of the blue and suggested I come in for a new program.  I agreed in a flash and met her the next morning.  She took one look at me and said I in needed to start again: heavy on the resistance training (weights) to build up my muscles to support weak joints.  Then cardio.

For the technical amongst us: lateral pull-downs for my shoulders, vertical chest press to get strong enough to do push ups, incline sit-ups to help me locate my abs and squats.  Squats!  I was sure I couldn’t do squats (my knees will collapse!), but after a little instruction and some gentle bullying, I found I could.

And it is working.  On my last visit, I raised some of my weights from puny to ordinary – after just three weeks.   I am very excited and quite motivated.  I actually look forward to each session.

On my wrist

The other thing was even more of a revelation:  Julie bought me a Fitbit.  I’m sure you have heard of them.  You wear it all day and (among other things) it counts your steps.  It doesn’t sound much, and secretly, I was underwhelmed.  Julie has had one for a year or two and loved it, so we set mine up via the App on my phone and off I went.  The first day (just to make an impression), we decided to walk to our coffee shop (all of 10 minutes by foot) instead of driving.  Quick check: 3,234 steps!  Wow.  I only needed to do 10,000 steps a day, and I was a third there already.  That night we decided to walk around our block (we used to do this nearly every day, but gradually faded out of the habit): we stacked up 4,700 steps.  Hmm; not too difficult and pretty satisfying.

That was then.  Day by day I got just a little more hooked.  It’s pretty easy to clock up a few hundred steps, just doing stuff around the house.  And I can build on that with simple strategies like walking to my lunch shop, rather than driving (10 minute walk vs 5 minute drive – not including parking), or not bothering to look for the closest parking spot when I go to town; I just walk for a few minutes and clock up the steps.

The fact is that against all expectations, my Fitbit has actually changed my behaviour.  I make sure I have it on every day, and look for opportunities to walk for both the step count and the achievement.

Brisk walking is good, low stress, low impact, weight-bearing cardio exercise.  Ten thousand steps a day is generally recommended as ideal.  But that can be a challenge for many BigD-ers, especially on dialysis days.

My totals vary.  Most dialysis days, I walk maybe 8,000 steps.  On non-BigD days I usually manage 10,000 or even 15,000 steps, especially if we get out and about, like to our local library, the Sunday Flea Market or around the city looking for bargains.

(I absolutely recommend a Fitbit or some other fitness band (mine is a Fitbit Flex, but there are many others including the newest Microsoft Band 2).  They start at around $100 up to some stratospheric levels, but I’d go for the basic model.  In fact, there is an excellent Chinese one, called the MIBand, which costs around $20 delivered.  I just bought one for my daughter, and it’s pretty cool (especially the price).)

But the real message here is that while it takes a long time and quite some effort to get fit on dialysis, the big challenge is to stay fit.  And you can do that by keeping it new: new kinds of exercise, new gadgets, recharged mindset.  Then, like Chumbawamba, we can all say:

I get knocked down

But I get up again

You’re never going to keep me down

20 Years of dialysis: My plan for the next 20

This month it’s my 20th anniversary on dialysis.  Back in 2005 I am very sure I didn’t expect to be still dialysing (though I fully expected to still be here).

When people ask me the secret of successful dialysis I say, “Just keep turning up”.

And one failed and one iffy transplant later, here I am.  A little worse for wear, but happy and healthy, and expecting to last for at least another 20.

This is not an unreasonable expectation.  Unless you are living under a rock between sessions, you will know that on the life expectancy front, things have changed.  A lot.

In Australia over the twenty years that I have been swanning around on dialysis, the number of people aged 100 or more increased by 263%.  This is much the same in many other countries.

The interesting thing about this is that 50 years ago, if I retired at my current age (63), my typical life expectancy would have been 5 to 8 years.  We all know why.  Life was harder and more physical and we didn’t worry much about what we ate, drank or smoked.  The expectation then was that I would relax and enjoy myself, wind down, maybe play golf and socialise between doctor’s visits.  After a few years, the grim reaper would come to my door.  The end.

Not so today.  A less physically demanding lifestyle, advances in medicines and biotech, and a better understanding of the benefits of exercise and healthy eating mean that most of us are likely to live on for another 30 years.

Childhood, Adulthood, Elderhood

Which has a lot of people thinking.  Thirty years is a long time: longer that our childhood, longer than our teenage years, longer than most of us took to raise and release our kids into the world, and more than half of our working life.

Retirement seems a pretty lame word to describe a 30-year life stage.  Like the Americans did in the 50’s when they coined the word “Teenager” to describe our adolescent years between childhood and fully-grown adult, we need a new word in our lifespan lexicon that reflects the challenge and the potential of this 30-year gift.

The one I like the best is Elderhood*.  It has the right connotation: we are elders, with enough life experience and physical and mental scar tissue to have learned a few things that may be valuable to those coming after us.  Things about life, about work, maybe even about love.

Elderhood is not just a made-up word so that marketers have a new demographic.  It’s a state of being, and many over 60’s have already arrived; once they hear the term, recognise the rightness of it.  Against all expectations when I was younger, I rather like being my age.  I no longer work full time, but I enjoy the work I do between dialysis sessions, and fill my time off with new projects (like MOOCs, this blog, Mandarin) and a fair dose of fun.

But if I’m going to be here in 2035, I need to think ahead.  If retirement is the Autumn of my life, Elderhood is the Spring of new connections and experiences; a new phase of growth.  What will I do? With whom?  What do I like doing?  Maybe a personal project or community service?  Some Crowdsourcing?   All of these?  I need to think it through.

So I’m making a list, not of specific things, but of the attributes of activities that would suit me.  Like:

  • More a brain thing than a hands thing (I’m not super with my hands)
  • Something that draws on my knowledge and experience
  • Technology-oriented would be good
  • Working with people in small groups
  • The opportunity to be creative
  • Be satisfying
  • A clear start and finish (so I know when it is over)
  • Each involvement is over a defined period time
  • It leaves time and headspace for family and fun.

This is my first stab at visualising my Elderhood.  It’s a movable feast that changes each time I think about it.  But the seed has been planted.  It will still involve “retirement” activities like travel and lazy days, but that’s just one part of a much more exciting future.

How is your Elderhood shaping up?

*Coined by Australian journalist and academic Val French

MSCs help us Reject Rejection

The light of rejection-free, healthy kidney transplants has entered the tunnel, and should arrive at our end in just three to five years.

Last month a senior researcher from the Cell and Tissue Therapies WA at the Royal Perth Hospital (CTTWA) presented a paper to the Renal Society of Australia‘s annual conference that has profound implications for us BigDers.  It detailed their early clinical trial successes in using Mesenchymal Stem Cells (MSCs) to stop kidney transplant rejection and to repair acute kidney injury (among many other medical wonders).

Quick MSC primer:

Stem cells in our bodies have the amazing ability to self-renew (make exact copies of themselves) as well transform, or differentiate, into other cell types with specialized functions, such as blood cells, muscle cells, and so on.  They become the various cells throughout our bodies during early development, and help maintain and repair certain tissues during growth and adulthood.

MSC Manufacture

MSC Manufacture

Mesenchymal (“Mezen-kye mel”) Stem Cells are adult stem cells that can give rise to many types of tissue, such as bone, cartilage and fat.  MSCs were originally discovered in bone marrow, but they also exist in other body tissues, including skin, fat, placenta and umbilical cord blood.

In the mid-2000s, early clinical trials found MSCs could suppress inflammation and repair damaged tissue, and might potentially be used to treat diseases like myocardial infarction, liver cirrhosis, Crohn’s disease and amyotrophic lateral sclerosis (ALS).

Then in 2006, researchers found that they could also help repair damaged tissue, suppress immune reactions and even prevent rejection.  Not just for matched donor-recipients, but for universal use: they induce no immune response of their own so they can be manufactured, frozen and provided at call, off the shelf.

Successes with transplants

CTTWA at Royal Perth Hospital, like many others around the world, began working with MSCs around 2005.  Initially, they developed processes and techniques to manufacture them (they are now a licenced MSC manufacturer and provide frozen MSCs for clinical trials evaluation to hospitals around Australia).

Then, following the finding of MSCs capacity to suppress the immune system, they also began clinical studies to evaluate their safety and effectiveness for treating transplant rejection.  Their first trial, in 2007, was as the last resort for a young bone marrow transplant patient who was suffering the final (and usually fatal) stage of Graft vs Host Disease (GVHD).  This may happen after a bone marrow transplant where the donor’s bone marrow attacks the patient’s organs and tissues, in serious cases with horrendous consequences.

Soon after infusion, the MSC’s calmed the immune reaction, reduced the symptoms and began repairing tissue.  Subsequent treatments over the following weeks saw almost complete remission.  Months later, the GVHD returned, but faded again with further MSC treatment.  This cycle of remission and relapse continued for the next few years.  Now in 2015, the patient has been free of GVHD for over three years.

Protocols for treating patients continue to be developed.  For example, there is now a clinical trial with MSCs being administered as soon as the GVHD is detected, rather than waiting until the disease becomes life threatening.  Subsequent GVHD trial patient recovery numbers show that MSCs can significantly reduce and even eliminate rejection (52% recovery vs 10-15% recovery rate before MSCs).

Two years ago the Centre began clinical trials on lung and kidney transplant rejection, and on repairing donor kidneys that have been damaged during removal, between transplants, or when blood supply returns to the kidney when first transplanted.

MSCs stop rejectionA typical kidney transplant rejection treatment protocol consists of a series of small infusions (about 40mls) of MSCs into a vein, typically over a 4 week period: the rejection fades away.

While as yet incomplete, all of these trials have provided clear evidence of the effectiveness of MSCs in suppressing rejection and repairing damaged organs.

So what are we waiting for?

The paperwork.  Every new drug treatment needs detailed written clinical trial evidence of safety and efficacy.  In the right format, over an extended period, in triplicate.

Formal clinical trials are longwinded, meticulous beasts (as they should be, we don’t want the cure to be worse than the disease).  They usually go through three phases before release:

  • Phase I clinical trials test a small group of people (e.g. 20-80) to evaluate safety (e.g. to determine a safe dosage range and identify side effects). These are cheap to run and are often run in-house
  • Phase II clinical trials may test from twenty to several hundred to check that it works as intended and to further evaluate its safety (the number depends on how effective the therapy is: these Phase II studies only need 20-66 patients)
  • Phase III studies may test several hundred to several thousand by comparing the therapy to other therapies, monitoring for adverse effects, determining dosing schedules etc, depending on the design of the trial and expected response.

There is also a fourth Phase IV done after the treatment has been released for use.  Where clinicians monitor the effectiveness on the general population and check for adverse effects of widespread use over longer periods of time, etc.

The current MSC kidney transplant rejection trials are in Phase 1.  Phases II and III get progressively more expensive (we are talking several to many $millions) and time-consuming (3-5 years depending on the recruitment numbers).  However, if the early Phase clinical trial outcomes demonstrate high clinical efficacy then it may be possible to fast track release (making it even less than 3 years).

So for those who want to be involved right now, it’s not easy.  Patients may be recruited to a trial if they fit the profile and eligibility criteria (people who are actively rejecting a transplanted kidney and being located in the right city are two big ones) and are prepared to accept the risks.  Some patients may be granted special/compassionate access to a trial, for example if the treatment is their last resort, having exhausted all other avenues.

So, in summary, MSCs look like they can be used to stop rejection in its tracks, but we need to wait for the clinical trial outcomes.  While frustrating, this is a lot better than where we were a few years or two ago, when things looked positive, but unproven.

The light in the tunnel is getting brighter, but there are still a few stops before it arrives.  For a working transplant, I can wait, and maybe even put off any transplant until it does.

Fistulas and fatal haemorrhages: what to do

In February 2010, I wrote 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 flow of posts about other people who had died or came close to death from a leaking or haemorrhaging fistula, and it started to look a lot less rare.

In August 2011, I wrote: Dialysis, fistulas and fatal haemorrhages setting out some expert opinion on how to spot the danger signs and action to take to prevent a rupture.

Several people wrote back, saying how they had taken action and prevented their loved one’s fistula from rupturing.  But still, the horror stories keep coming, with more than 30 deaths and near misses posted over the last four years.

Most people posting were still unaware that ruptures could happen and had zero training on what to do if a rupture occurred.

This seems like pretty important information, which should be posted in every dialysis unit and office, everywhere.  So in an effort to get the word out, I have done more research on three areas:

  • Just how common are fatal haemorrhages?
  • The best way to avoid a rupture and
  • What to do if one happens.

Until 2013, apart from the odd passing reference, not much had been written about fatal fistula ruptures.  Presumably most people assumed they were a rarity and not worth the effort.  Then Lynda K. Ball, MSN, RN, CNN, the Vascular Access Specialist for Fresenius Medical Care in Washington State published the excellent Fatal Vascular Access Hemorrhage: Reducing the Odds, in the Nephrology Nursing Journal, of the American Nephrology Nurses’ Association.

Though written for nurses rather than for the proud owners of fistulas, it is right on the money: “ to recognise accesses (fistulas and grafts) at-risk for Fatal Vascular Access Hemorrhage (FVAH) and implement strategies to decrease FVAHs” (you know the problem has gone mainstream when it gets its own acronym).  For good measure, she also throws in the best technique for stopping the bleeding if the worst happens.  It’s a good read (though the pictures are a bit gruesome).

Here are some highlights.

Firstly, two FVAH factors listed in the paper jumped out from the page:

  1. Fistula/access-related complications had occurred within six months prior to bleeding deaths.
  2. In some states, up to 80 per cent of rupture deaths occurred at home.

We’ll come back to these factors shortly.

How common are fatal haemorrhages?

It seems that no one actually knows for sure, but they are more common than most people imagine.

In the US, End Stage Renal Disease Notification of Death CMS-2746 forms indicated that between the years 2000 and 2006 (the most recent national data available), there were 1654 fatal vascular access hemorrhages.  This represented about 0.4% of deaths of patients on hemodialysis.  However, these are only reported deaths and are considered an underestimate.

It could certainly be double that figure, say 0.8 per cent.  That seems a small number until you realise that there with about 500,000 people on dialysis in the US, 0.8% is 4,000 people.

FVAH deaths don’t seem to be tracked separately in most other countries.  This blog finds out about between five and ten a year from shocked relatives looking for answers, but it is by no means a definitive list.  Posts come from as far apart as the US, Estonia, New Zealand, India and 170-odd other countries around the world.

There does not seem to be a trend by country, rather it is much more local: it seems to depend on the quality of the unit.  In a well-run unit, fistula/graft haemorrhages really are rare.

Which brings us back to the two factors mentioned earlier.

The best way to avoid a rupture

Be fistula fussy

  1. Fistula/access-related complications had occurred within six months prior to bleeding deaths.

Fistulas don’t weaken to a point where they haemorrhage overnight.  The fistula slowly becomes weak, fragile and weepy due to infection, stenosis (reducing blood flow and building pressure) or an aneurysm (the fistula wall balloons and becomes thin).  In other words, red and sore fistulas that are infected, blocked or have weak spots that fail to re-seal after needling are warning signs of impending rupture for both dialysis staff and us.

From the stories posted on this blog, in well-run units, fistula/graft haemorrhages are rare.  Staff check everyone’s fistula regularly and if they see a problem, they act: either with antibiotics and treatment, or a referral to a hospital or vascular surgeon, to examine and rebuild the fistula.

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.

Be fistula fussy: if your fistula has any of these warning signs tell the unit staff and ask for medical attention.  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.

What to do if a rupture happens

Finger press; arm lift

  1. Approximately three-quarters of the deaths occurred at home, in assisted living, or nursing homes.

You cannot assume that medical care will always be at hand for emergencies.  If your fistula starts to bleed you need to know how to deal with it, even if just for a few minutes.

The easiest and safest way to control the bleeding is to:

  • Immediately apply direct pressure over the site of bleeding with a single finger (or more if the rupture is bigger) and
  • Raise the ruptured area of the bleeding above the level of your heart, to make it more difficult for the blood flow to reach the ruptured area due to gravity. (To see how effective this is, raise your fistula arm up above your head now – the blood will quickly drain away from your fistula.)

Do not take time to look for gauze or a tourniquet – these can hide the bleeding area and you may press on the wrong spot – put your fingers directly over the ruptured area and apply pressure immediately, then lift your arm.  Hold the pressure on the site for at least 10 minutes without peeking.

Once things are stabilised, call for medical help.

If someone is with you, they can call while you press on the site (or vice-versa).


Pass on this information: print out this or Lynda’s paper and put it on your unit’s noticeboard.  These strategies will help avoid fistula ruptures and save lives – yours and mine.

eHealth – What’s in it for us?

Two reasons I worked through the eHealth MOOC I wrote about last time were to find out just how big the eHealth movement is and where it was or can be successful in making life easier providing better health outcomes for us BigD-ers.

Firstly, it’s big, very big.  Most countries are setting up or designing an eHealth framework of some kind or other.  They include the usual suspects, like Scandinavia, the UK, most of Europe, Hong Kong, Singapore, Australia and New Zealand, and parts of Canada and the US.  Thankfully much of the rest of the world is also on the job, like Russia, Brazil, India, Pakistan, the Philippines, Mexico, Turkey, Nigeria, Israel, Iran, Saudi Arabia.

There are also at least two eHealth systems developed and run by Non-Government Organisations (NGOs):

  • OpenMRS, developed as a collaborative open source project in the US, which is in use in at least 23 developing countries (mostly in Africa), and
  • United Nations Relief and Work Agency (UNRWA)’s e-Health system developed in-house in 2011 to address the administrative burden of millions of patient is the Middle East region (Lebanon, Gaza and Westbank, Syria and Jordan).

These two systems are great examples because they were designed and built mostly by volunteers to meet their core need:  a single, comprehensive, mobile medical record that is available wherever the patient goes.

Most eHealth frameworks are based around the World Health Organization’s National eHealth Strategy Toolkit, which is a roadmap and toolkit for developing or revitalizing a country’s eHealth.  The Toolkit has three steps:

  1. Develop a national eHealth vision that responds to health and development goals
  2. Develop an implementation roadmap that reflects country priorities and the eHealth context.
  3. Establish a plan to monitor implementation and manage associated risks

I rather like Israeli definition of national eHealth: To achieve a universal access to health care services leaving no one behind.  Short, sweet and inclusive.

That’s the theory.  So what should/could the ideal national eHealth framework deliver to us BigD-ers?  Well, we are high-maintenance individuals, all with similar healthcare needs.  We use at least one health service at least three times a week, often more.  So as an example, here some of the eHealth services I’d like:

  • eDialysis: that provides dialysis performance details after each session, with opportunities for contact with dialysis clinicians for queries and support
  • eResults: online access to all my test results, blood and body fluid tests, biopsies, ECGs, MRIs, and all other medical imaging, with facilities to email the associated clinician for advice/discussion or to set up an appointment (for a fee)
  • eMedications: a list of all my current and past medications, with side effect details, would be useful
  • ePrescriptions: prescriptions generated in the doctor’s electronic prescribing system and then transmitted through a secure network to the national e-prescription database. While only the prescribing physicians and pharmacy personnel have access to the prescription, I can then have my medication dispensed at any convenient time and pharmacy
  • eReferrals: especially for renewals, simply going online and requesting a new referral, which would be emailed to my specialist. I’d be happy to pay a small fee for this rather than us both blowing precious time (and money) on a full visit
  • eEmergency: An on-my-person record of personal details, next of kin, ailments, medications, prescriptions, health insurance, and emergency contacts
  • eHealthInsurance: readily available, electronic proof of health insurance
  • eAppointments for dialysis: being able to set up my treatment times online, to swap times and even book times in other dialysis clinics electronically
  • eAppointments for other health care services: setting them up online with my nephrologist, general practitioner or family doctor, clinics/hospitals, nurse practitioner, pharmacist, physiotherapist, psychiatrist, clinical psychologists, occupational therapists, dietitian – the lot
  • eVaccination: a system that tracks my vaccination history and reminds me when we need another (currently I am more likely to get a vaccination reminder for my dog!)
  • eDonor: if there are any useful bits of me left when I go for the big sleep, the fact that I would donate them should be both with me (on my driver’s licence) and online somewhere
  • eMyHistory: secure online access, ideally in timeline and calendar formats, to my patient records (about my hospital visits, transplants, infections, heart problems, etc), specialist visits, family doctor visits (in fact, from all the people listed in my eAppointment dream above)
  • eDNA: access to my genetic profile, showing my health risks, inherited conditions, drug risks and general traits. I want to know if I have any vulnerabilities or inherited diseases.  This would also be available for the transplant team to help with matching.

Most of these are already available somewhere but in isolation.  I’d like these on my smart phone please, preferably as a single App.

This list (except for the eDNA; it will probably be on next year’s list) is what eHealth is aiming to deliver.  Most countries are starting with the easy stuff (eAppointment and ePrescription are popular) because they can be developed relatively quickly as stand-alone projects.

Other countries (including Australia) decided on the big bang: to develop a national eHealth record system and then convince patients, clinicians, hospitals and health care services generally to use it.  Without exception, this approach has been very expensive and very, very difficult, especially in countries with a mix of public and private healthcare providers; to the point that most have failed on the first try.

The Scandinavian eHealth system is the most advanced because they started earlier (a couple of decades ago) so they have the most scar tissue and the most success.

But whatever the track record, the expected benefits from eHealth keep it firmly on the agenda in every country, including yours.  To find out how it is progressing, just Google: (your country) and eHealth.  You may be surprised; if not now, soon.

ps: I’ve ignored the many concerns about security and potential for misuse of a centralised health record about each one of us.  They certainly exist, but must wait for another day.

e-Patients: being our own guardian angel

I am now in week 5 of the eHealth MOOC I wrote about in my last post.

It has been a revelation.

The most eye-opening subject was covered in week 3: eHealth for patients and citizens: all about e-patients.

Before we go further, meet e-patient Dave deBronkhart.  His story cuts to the chase: it saves me writing and it saves you reading.  It only runs for 16 minutes, and its great!

What’s the key message? If Dave saved his own life after his healthcare community let him down, so can we.

An e-patient is a type of expert patient.  One who uses online resources to get knowledge, to connect and share with other people in the same situation, who is action-oriented; a believer in  self-care and their own abilities to contribute to their health and well-being.

According to Tom Ferguson, an American doctor who coined the expression, an e-patient is equipped, enabled, empowered and engaged.

In short, when we become an e-patient, we become our own guardian angel.

Most of us BigD-ers are well on the way to e-patient-hood.  Already we take the time and make the effort to understand our health problems and we want IN on our healthcare, ideally as collaborating partners.

And we are not alone; we are part of a worldwide movement that is becoming a force for massive change.

But not everyone it there yet.  This blog still receives a steady stream of anguished and angry comments on one of its most disturbing posts: Dialysis, fistulas and fatal haemorrhages.

Since 2011, more than thirty grieving relatives have written about a loved one whose fistula was infected or blocked, or became fragile and weepy, who was ignored and fobbed off by an inadequate health  care service until they died, often in a pool of their own blood when the fistula ruptured.  Here are just two examples so far this month:

Marlene wrote: “My 40 yr son was found on his bathroom floor bled to death from a ruptured and infected fistula, 4 days after a declot procedure. He was trying to tie his tee shirt around his left arm to stop the bleeding. He had a declot procedure done on the 11/28/14. The vascular doctor who performed the procedure contacted my son’s nephrologist at the dialysis center and informed him of the condition of his fistula and that he needed to have it taken care immediately.

My son was discharged home to die. The vascular Doctors should have called the ambulance and sent him to the hospital for immediate surgery. This is a situation you do not put off. This is life and death.

The police found him dead on his bathroom floor, for crying out loud. Mr D where do we go from here. He has small children who need answers.  Some doctors do not listen attentively to their patients. What’s my next step for the sake of my grandchildren?

Juana wrote: “My daughter’s port fell out they put another one in Saturday the 25th 2015 took her to the hospital. One week after they put the new port in they said that she is very sick and she had an infection, She died on the 27th 2015. I want an answer. I don’t understand.  My baby was 23 years of age. Why didn’t they know about the infection at dialysis? I need an answer; what do I do?”

While these dreadful outcomes and the others in the post are mostly the result of healthcare inaction, it could also be because our guardian angel, our one resource that cares for us above all else, our e-patient, was missing.

All BigD patients need to become e-patients.  No more a passive recipient of care, going to dialysis, closing our eyes, putting out our arm and hoping for the best.

Imagine a world where every BigD patient is backed up by their e-patient guardian angel.  How many infected and ruptured fistulas, let alone horrible deaths would happen then?