The Ballad of Billy The Kidney

Running to your strengths: the views of Thérèse Rein

The 7.30 Report on ABC [Australia] last Wednesday night featured an interview with Thérèse Rein, wife of the Prime Minister of Australia, the Rt Hon Kevin Rudd MP.  The interview was conducted by Kerry O'Brien.

Whilst not specifically about transplantation, nor the illnesses associated with this, Ms Rein nonetheless did have some very interesting and worthwhile things to say about identifying one's health strengths and then running with those - rather than being fixated with the negatives.

• Broadband version of interview

• Dial-up version of interview (very thoughtful of the ABC to provide this!)

• Transcript of interview

Ms Rein grew up with a father who did not let his paraplegia get in the way of developing an aeronautical engineering career.  She later built up an international business specialising in job placement of disabled people.

Ms Rein's words about taking stock of one's limitations and then running to one's strengths are very worthwhile.

When confronted with a chronic illness - such as are often associated with organ transplantation - one can sometimes forget that one still has many strengths and skills that one can develop and utilise.

[...] something that I actually heard [...] what Paralympians do - and my dad was a Paralympian. What Paralympians do is they don't focus on what doesn't work, they focus on making what does work, work to the max. And that's what my dad did. And I think I've learnt a little bit about how to do that from him.

Indeed, I try to get this across to my students at TAFE; although not in the context of chronic illness, some experience other feelings of negativity after arriving in a new country or being out of the workplace for many years or just not being confident enough.

My message is to certainly learn what you can in your classes - but to also take stock of your existing skills and strengths and to use those as well.

So cheers to Therese Rein - I shall play the first part of this interview in my classes in the future.

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• Image credit:  Website of the Prime Minister of Australia

Quick, conductor! The screens!

Dear old CityRail.  Just when I think they can't torment me any further, along come new ways of doing so.

We have a new train timetable coming into effect on October 11.  And CityRail have just announced (or admitted) that not all trains on my local line (the South Coast line) will have toilets.

Now bear in mind, folks, that the trip between, say, Kiama to Central takes over 2 hours.

And bear in mind that there are plenty of people who place value on the on-board loo:

• Kidney transplantees, who are not supposed to place undue strain on their newly-installed plumbing
• Elderly people
• People on chemotherapy
• Children
• And people who just need the loo

To tell the truth, I only ever use the on-board loos in time of dire emergency.  This is because the state of the loos are usually rather disgusting.  But sometimes I just gotta go (especially with all that water that I have to drink).

CityRail helpfully suggests that I just use trains that have on-board loos;  however, the new timetable doesn't give any clues as to which is which.

Oh well!  Back to my motor car and the National Public Toilet Map.

• Image credit: The picture of the Millenium Train parked at Central Station (Sydney) is from Skyscraper City

World Transplant Games 2009 > Day 8 and Closing Ceremony

This post is subject to further update after initial publication.

Here is a general round-up of how the last day of competition in the World Transplant Games 2009 was reported in the world's media and blogosphere.

Impressions of the closing ceremony are also included.

As with my previous posts on the Games, I have sought to guide readers as to how to make your own choices in locating material in the WWW. This, after all, is the power of Web 2.0 !

For more information you might like to search as follows.

• For news items: world transplant games on Google News
• For blog posts: world transplant games on Technorati or Google Blog Search
• For tweets: world transplant games on Twitter
• For video: world transplant games on YouTube or Google Videos (latter is not really recommended, based on my experience over the last week)
• For phlogs (phone blogs): world transplant games or wtg on ipadio

To get a rough interpretation into (or out of) the English language, try Google Translate or Yahoo! BabelFish. The translations that follow are from Google Translate (so please allow for that). If you happen to be proficient in any of the non-English languages that follow, and would like to suggest a translation, you are most welcome to do so.

Before I move to this list, may I conclude this section of this post with a phone-blog from a commentator at the Games.  I think she best expressed the philosophy of these Games.

EMBEDCODE

Also folks, please bear in mind that what follows is not an exhaustive list.  Rummage around the WWW using some of these ideas, and see what you come up with!

World Transplant Games 2009 > Day 3

The World Transplant Games continue on the Gold Coast of Queensland today.

A guest of honour at the Opening Ceremony last Sunday was Mr Frank Vig.  At 93 years old and having responsibility for a transplanted kidney since 1974, he is Australia's oldest living donor recipient.

Also on Day 1 of competition, Irish competitor Tony Gartland kicked off his team's competition in a big way by picking up a silver medal in the 5km road race.

Unfortunately I am at this moment having trouble accessing the World Transplant Games website to access the medal standings.  You might like to try it for yourself.

More updates as I am able to access them!

• Image Credit: from the Opening Ceremony of the World Transplant Games.

The Gift

Brace yourself, folks.  In its ongoing quest to regain its lost ratings crown, and in its ongoing ratings war of attrition with the 7 Network, the 9 television network in about to re-launch the reality series The Gift.

Neale Prior, writing in The West Australian, sums the situation up neatly by writing:

The Nine Network has had more than its share of reality TV flops of late, so it is probably a good thing that it is transplanting a proven performer back into its schedule.

To its credit, the one previous series of this program is credited with a 40% increase in organ donor registrations in Australia - off an admittedly low base figure, given that Australia has one of the worst figures in the Western world for organ donations.

Anything that raises this figure cannot be a bad thing.  So I will watch next Wednesday's episode and report back.

• The Gift is currently scheduled at 9pm on Wednesday nights on 9 and affiliate stations.

• Thinking of making your donor intentions known? In Australia, you can register for organ donation at the Australian Organ Donor Registry.  Elsewhere, discuss this with your family medical practitioner or (in many countries) your driver-licencing authority.

• Wherever you are, discuss your wishes closely with your next of kin and clearly make your wishes known.
  

Great figures in transplant / non-transplant history: Steve Jobs

Steve Jobs is a recipient of a liver transplant.  He is also the co-founder and CEO of the computer giant Apple Inc.

He is quite famour for building Apple up from a garage company to the multi-national computer force that it is today.

Rather than re-tell the story here, I would just like to express the hope that Mr Jobs will be a good example of how a transplant patient can continue to be a good and useful member of society.

Items on Steve Jobs on the WWW include:

• "Steve Jobs had liver transplant: report", Sydney Morning Herald, 20th June 2009.  (I am not linking back to the original Wall Street Journal Report because you have to subscribe to WSJ.com to read the article.)

• Wikipedia article

• Peter Elkind, The trouble with Steve Jobs, Fortune, 5th March 2008

• Steve Jobs oral history - Smithsonian Institution, 20th April 1995 (PDF file)"

EMBEDCODE:

This YouTube video showcases Steve Jobs's favourite cliches.  It was uploaded by rmoisescot .

medical_imperialism

Further to my post introducing research on Good Samaritan websites comes this article from the Melbourne Herald Sun concerning an Australian woman paying a Filipino man AUD $65,000 for his kidney.

Dialysis is a tough road to travel.  My wife and i did it for 5 years, and I, like all other renal transplant patients, still have it hovering over our heads (at least in the background, if I might mix my metaphors).

Different people react to this situation in different ways, and its not for me to judge the opinions of others and the actions of others (unless these actions are wrong).

But I sincerely believe, in my humble opinion, that this lady has this wrong.

This belief comes from the following:

• It is the worst type of medical imperialism to wave a roll of cash before a person in exchange for their kidney.  This is not an equal power relationship.  The bloke would no doubt do anything to put food on his family's table, to the point of doing this.

• Judgements about suitability of donation should be made purely on the basis of medical reasons, entirely free of other considerations - such as ability to buy or ability to sell.  This is why I have such an issue with the current form of health insurance in the USA - apart from it being so utterly unjust to so many people, it also interferes with the purely medical decisions needed to allocate donor organs.

In justifying this position, this lady is also inadvertently sprerading misconceptions about dialysis.

The article states that her "... health has deteriorated after three years of gruelling dialysis."  (I assume the article refers to haemo-dialysis, but it is not clear.)  If this is so, then she should be talking closely to her doctors because usually a person can go along quite well on dialysis. 

And Australia has a very low mortality rate for dialysis patients.

And quite apart from this, the last thing a prospective dialysis patient needs is to be told inaccurate stories of "slow death" on dialysis.

Finally the lady is quoted in the article as saying

[...] you have to understand you can't judge me because if you were in my situation you would do exactly what I am doing.

Well, my wife and I are 2 people who had 5 years to do what she is doing and we chose not to do so.

• Disclaimer

• Image credit:  picture of donor Alex Sarip by Michael Sarini, published in HeraldSun.com.au on 2nd March 2008

Live kidney donors and Good Samaritan websites

An interesting article in Clinical Transplantation, and discussed in Science Daily, concerns research into the rise of so-called "good Samaritan" websites permitting those waiting for kidney transplants to solicit donations.

The rise of living donors is interesting;  until I read this article, I had no idea that 38% of kidney transplants in the USA were involving live donors.

It seems that as medical science pushes people in the direction of live donors, side-effects such as the "Good Samaritan" website must be anticipated.

This is particularly so where some kidney conditions (such as mine) have genetic causes, thereby ruling out donation from one's family / relatives.

I personally have grave reservations about the "Good Samaritan" concept, on the basis that anything that distorts a purely medical judgement on appropriateness of prospective donation is to be discouraged.

But hey - if people are pushed to the "live donor" option, then this type of website will increase.

• Disclaimer

• Image credit: The Good Samaritan by Jesus Martinez Gordo.  URL:  http://jesusmartinezgordo.info/images/HE%20QI/cuadros/5-GoodSamaritan.jpg

Great figures in transplant / non-transplant history: Paul Hudson

You know, I always assumed that certain jobs and careers were off limits to transplantees - but this story makes me think again.

A gentleman named Paul Hudson has just joined the New South Wales Police Force - six years after a kidney transplant.

There you go!  I erroneously thought that being a police officer and a transplantee were mutually exclusive.  And not through pessimistic reasons - just being realistic (the new kidney usually sits in a relatively exposed place in the body, unlike native kidneys).

Its always useful to be shown another way of thinking.

• Media release from the New South Wales Police Force.

• The picture of Probationary Constable Paul Hudson is from the Sydney Morning Herald of 8th May 2009

Illness and perceptions: a dose of swine flu

In previous posts I have commented on how people can be extremely ignorant to a near-offensive level of things that don't directly affect them.  For example, the fellow at  a previous job who quite seriously asked me if my crates of dislysate were actually my blood being shipped off for cleaning.

Upon reading this item on the building A(H1N1) (swine) flu pandemic by Robert Shrimsley in the Financial Times of London, I found myself pondering this question again.

What particularly struck me about this is the way in which journalists choose which subjects are and are not worthy of attention.

[...] Just last Friday this was merely a flu outbreak killing Mexicans and - let's be honest here - the world's press is not normally troubled by Mexican mortality. The deaths remained reassuringly mundane from a western media point of view - there were no indications that any of the dead had been middle-class and there were no journalists among the victims.

Yet by Saturday morning the story had spread dramatically with the first reports of Americans catching it.

Few could deny that the conditions did seem perfect for this pandemic. It was a particularly slow news weekend and the IMF conference had failed to deliver a sexy story.

More worryingly the disease was mutating. By Sunday the killer swine virus had reached Europe where it had mutated into several new forms, including some which were showing a marked resistance to Lemsip . Scientists were said - by several news agencies - to be alarmed by the changing nature of the virus, while journalists were exhibiting signs of being hot and bothered.

That day marked the start of the news pandemic. News organisations across the world were reporting the new killer Mexican virus - which had still to kill anyone outside Mexico -- in the apocalyptic tones previously reserved for bird flu and SARS. [...]

Sometimes I wonder whether kidney disease - to use the example of something with which I am familiar - would be more newsworthy if it wasn't associated with one's personal water works (not the most glamourous part of the human anatomy).

Anyway, musn't grumble!  If I was still on dialysis I'd be making up another shipment of my own blood for cleaning.

• Image credit: picture of the A(H1N1) virus is from Wikimedia Commons

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UPDATE - 28th May 2009:  Well, the H1N1 has well and truly arrived on Australian shores and the Sydney Daily Telegraph is carrying on like there are visigoths at the city wall.