Lisbon adventure #1

Lisbon: we were having a ball.  Different, amazing buildings; windy, cobbled lanes; tiny yellow trams squeezing through cramped mediaeval streets, shops with never-seen-before stuff that’s hard to resist.  History at every turn.  And here comes one of those delightful No 28 trams.  Will we catch it?  Absolutely.  Where’s it going?  Who cares?

We line up.  Hmm, it’s packed with people thinking like us.  Maybe there’s room…  There is a rush to get on and we are dragged along.  We get to the front step, still not sure whether to get on…  Maybe we’ll wait for the next one.  Then the rush gets a little firmer.  Julie is carried on board.  Some guy that obviously really wants to get on pushes in front of me, right up next to Julie.  Some other guy thumps ungracefully into me and we have a double-decker human sandwich.  I catch Julie’s eye and we decide to abandon ship.  We reverse direction until we are standing once again on terra firma, while the tram slowly moves off, with arms, legs and bodies still protruding from the doorway.

Well that was interesting.  We decide to walk on, maybe we’ll find a less frenzied tram stop.

I do my usual every few minutes’ routine: tap left pocket: phone and passport – check; breast pocket – glasses and phosphate binders (pills) – check; right pocket – wallet – Wallet! No wallet!!  What the … redo the routine, tapping and checking everywhere.  But I already know.  It’s GONE.

First the recriminations.  How could I have been so dumb?  Leaving my wallet bulging at the pocket of my jeans.  Begging to be stolen.  And why didn’t I feel the hand in my pocket.  If only we’d stayed on the tram, and discovered the theft.  I could have accused the thief, directly behind me, and recovered my wallet.  Then again, maybe not.  They work in pairs, so he would have passed it on well before I woke up to the loss.

Glumly, we spend 10 minutes calling banks and cancelling my credit cards, then we walk to the hotel and talk about it with the Receptionist.  She insists we go to the Police and report it.  The Police tourist station is only a few doors away, hidden inside a museum.  So off we go.

We arrive at the tiny station where five police sit at five desks taking statements in a range of languages (we find out that almost all are for pickpocket cases).  Julie pushes the English button and we take a number.

About half an hour later we go to the English-speaking desk and tell our story to an efficient and sympathetic policewoman.  It takes about 30 minutes.  I fill in a couple of forms, handover my passport and wait while she types up the report the lists where and when, what was taken, worth how much.  I sign four copies and take two with me.  We both feel a little better, maybe from just talking about it.  We have no expectation of getting it back.

Back to the hotel.  Drained.  It’s nearly 6 O’clock.  We go out for a light meal and come back to relax, read and maybe try to translate a Portuguese TV show (or maybe just look at the pictures).  By 10 O’clock we are both in bed with the shadow of today’s adventure.

At 10:30 the phone rings.  It’s the receptionist.  The Police called: they’ve found my wallet.  What?  No.  Really?  Yes.  Come to reception and they will give me the address of the Police Station where I can collect it.  Tonight.  Unbelievable!

We both snap awake and get dressed.  Down to the Receptionist, who marks a map with an X and gives me a name to ask for.  It’s about 10 minutes’ walk away, just down the road from the scene of the crime.  We walk the cobbled footpaths of Reu ***, through shadows and mists, past the occasional stranger and thousand-year old church until we find it.  We step inside, I ask for the name.  Ah yes.  Smiles all around.  A uniformed constable appears with an envelope, tears it open and wallah, my wallet.   He hands it to me with a small bow and disappears.  The man at the desk shakes my hand.  Many Obligados, smiles and nods and we step back out into the street.

The circle closes: we started our adventure around the corner and completed it here.

Check the wallet: everything in place except the money: credit cards, licence, health insurance, prized photo of Julie.  Too bad we cancelled the credit cards, but that’s a small inconvenience.  Back to the hotel and bed.

Later that night: perhaps it was all a dream, or perhaps we inadvertently stepped into a live show:   thrills, excitement and high emotion, with a cast of hundreds and the City of Lisbon as the theatre.  All for a measly €120.

Off to the Diaverum Global Dialysis Conference

I’ve been missing in action for the last few weeks, for a couple of reasons.

Josie & Liam Firstly, our No.2 Son just married his lovely fiancé here in sunny Melbourne (on the beach at Elwood).  It was a great wedding, but they live in London, so Julie and I have been pretty busy preparing. Not much time for blogging.

Secondly, late in December last year, I was humbled by Esteban Harper Cox, the Managing Director of Diaverum Australia’s generous invitation to address their 2016 Global Conference, in Lisbon, Portugal on 21 April (about three weeks from now!).

I have been a Diaverum patient for more than 20 years, but that is not the reason.  Over the last couple of years, I have been working with a team of specialist clinicians, IT experts, designers and managers at Diaverum Melbourne, Lund (Sweden) and Munich (Germany) to develop an App for people on dialysis.

I can’t say a lot about the App yet, other than it is in final production now and will be released to the App store within a month or so.  (I hope to tell you much more once it is released.)

Esteban has asked me to share my experiences and insights as a dialysis patient, about my role in designing the App and more generally, about this blog, how it began and what I see as its value in “easing the journey of many a dialysis patient”.

JLC PD suppliesI’ll be in august company.  The last dialysis patient speaker was Jean-Louis Clemendot, who in 2014 address the Diaverum Global Conference about his solo around the world sailing adventure. From his (Google Translated) blog: “I sailed around the world solo while on peritoneal dialysis. I crossed the Atlantic, Pacific and part of the Indian Ocean in 20 months, completing nearly 2000 PD treatments, alone aboard my boat. Then I received a kidney transplant before ending my tour of the world through the difficult period of storms…”   He’s a fascinating guy and his blog is absolutely worth reading (for English, use Google translate).

He’s an awfully hard act to follow if you ask me.

It’s shoved me right outside my comfort zone.  So for the last few weeks I’ve been working, working, working on my speech.  No time for blogging.

But it’s done now and I’m sort of ready to roll.

After the 21st I’ll be a little more active: blogging about the conference, the App and another project that are close to us the hearts of BigD-ers everywhere.

Back soon!

91 years old and not pleased to be on BigD – welcome to the club!

Jack added a comment a few weeks ago that is worth re-posting as a separate topic.  It’s a little twist on our most fundamental challenge.

I am a young 91 yr old man who has had systolic kidneys for over 30+ years. 4.5 +- creatinine level. last April (2015) my kidneys finally gave out and after a week in E.R. and another week in rehab. now on dialysis 3 times a week for 3 hours. My last check-up showed my creatinine at 5.9., a little improvement.

I do not think the doctors think I am a candidate for transplant at my age, but I am completely frustrated and depressed having to take the treatments.  I played tennis up to one year ago. If it was not for the love of family, I really do not know how long I could tolerate.  Do you, or anyone, have suggestions?

Many thanks

 

Hi Jack.  Young 91 year-olds are just as entitled to be frustrated and depressed as the rest of us.  And you are in exalted company.  I’m sad to say these feelings never go away entirely, no matter how long you are on dialysis.  But the big plus of dialysis – if you are getting enough – is that you get your active, healthy life back between sessions.  That is a huge gift, considering the alternative.  If you walked or ran, played tennis or wrestled bears before dialysis, there’s no reason why you can’t do the same after you go on dialysis (maybe smaller bears…).

Your body will need a few weeks to get used to the new routine, but if the dialysis is right, then you will be too.

Of course, I’m talking physically here.  Recovering mentally is a different thing altogether. And you are not alone in how you feel Jack.  Others have gone so far as to philosophise about it, probing the seven stages of the grief cycle that have become our intimate allies: Shock, Denial, Anger, Bargaining, Depression, Testing and eventually Acceptance.

But there is a world of difference between theory and practice.  I am certain that while many of us BigD veterans have finally reached acceptance, that doesn’t mean we have finished with our old friends Anger and Depression.  They are just under the surface, ready to emerge on weak days.

About a year ago I walked around our dialysis unit with my phone set on video and asked a range of people, young and old, what it was what like to be on dialysis (have a look, its worth it).  Everyone, in one form or another, said that in their head they were grateful, and accepted that they needed dialysis, but in their heart they still resented the time and hassle.  Amen.

But as you say, there are other things in our life besides dialysis.  Like family and sport, and for me personal projects, history, travel, Mandarin, writing, tech and biotech.  So much happening in the world.  It’s a great ride, and who knows what tomorrow will bring?

And what’s the price of a ticket on this ride?  Dialysis? –  Pretty steep!  But worth it.

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.