The Ballad of Billy The Kidney

Here we go! Here we go! Here we go! to the City2Surf 2009

Well folks, its that time year again.

Once again I shall be terrorising the good burghers of Wollongong as I join the University of Wollongong team to embark on preparation for the 39th City2Surf footrace in Sydney on 9th August.

The 14-kilometre event (just under 9 miles) allows me to:

• raise money for Kidney Health Australia
• focus on my need as a transplant patient to help manage the transplant by paying attention to my physical fitness and health

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 .

Better than a poke in the eye with a burnt stick!

I am grateful to Miriam Lippel Blum, editor of the CKD Blog Report, for this citation to a journal article about the role of humour in recovery in renal patients.

SVEBAK Sven; KRISTOFFERSEN Bjørn; AASARØD Knut

Sense of humor and survival among a county cohort of patients with end-stage renal failure : A two-year prospective study

As of this publishing, I have not read the article yet - but hope to before my borrowing rights at the university library run out.  Will report back if successful.

This reminds me of what I used to tell people about an heriditary disease even more frightening than that which was causing my kidney problems.

What could be worse than what I had, they'd respond, what with the dislysis, sticking EPO injections into my leg, and so on.

Then I would tell them:

BALDNESS!

(Cue scary background music)

At this point, my conversation companion would inevitably be retreating out of the room whilst facing me.

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Image credits:

• The image  of the Clown Doctors is from the website of The Clown Doctors

• The image of Elmer Fudd is from the website Smasher.net

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

Priorities: digital television vs universal health insurance

Let me state up front that usually I am reluctant to publicly comment on the affairs of another nation;  indeed, whilst I was in local government service, I never even commented on the affairs of another local government authority.

But I sincerely believe that I can claim an exemption with the USA.

The reasons I seek this exemption are:

• My wife is an Australian graduate of Berkeley and lived for some years there whilst studying.
• Her work brings her to the USA frequently, and I have been fortunate to accompany her on these trips since our marriage.
• We continue to maintain friendships in the USA, especially around the San Francisco / East Bay area.
• We have indeed lived in the USA, albeit for short periods of time (up to 3 months at a stretch).
• And of course the position of the USA in world affairs means that this position affects those outside the USA.

Having declared this, I now feel OK about making the following observation.

After hearing and reading about the horror stories about medical and insurance funding for health services in the USA (a cursory read of Dialysis from the Sharp End of the Needle shows this), and after following the agonising ongoing debate as to whether there should be a universal health insurance scheme in the USA, I was amazed to learn this week discover the following.

The US Government is offering subsidies to entice people to buy those set-top boxes as part of the switch to digital television.

The subsidy amounts to USD $40 per box.

This certainly shows where national priorities are.

• This YouTube clip shows an interview on WBAL TV Baltimore in which Commissioner Michael J Copps, of the Federal Communications Commission, explains digital television.  He is interviewed by Sarah Caldwell.

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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

Jelly beans herald Kidney Health Week

Kidney Health Australia has released a very interesting and rather cute video advertisement to mark the beginning of Kidney Health Week tomorrow.

Which jelly bean are you?

:

• Kidney Health Australia's media release follows.
• Kidney Health Australia's page on this campaign.

• Image credit:  NineMSN

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Great figures in transplant / non-transplant history: Natalie Cole

This blog wishes to salute the noted American singer Natalie Cole;  it has just been announced that she has undergone a kidney transplant in Los Angeles.

Goodonya, Natalie!

By way of reprise, here is a (somewhat visually wobbly) version of Unforgettable in which she does a duet with her late dad Nat "King" Cole.  This was uploaded by swinginkatz.

You might also wish to view the "behind the scenes" video from her official website.

:

• Announcement on her official website.
• Image credit:  MyBCT.now.com
  

UPDATE - 24th MAY 2009:  In doing follow-up research on this post I have just stumbled across the announcement of the death of Natalie Cole's sister Carol.  Always a sad time, a death in the family is particularly sad when one's energy is directed at getting over a transplant.  On behalf of our readers, this blog conveys our condolences to the Cole family.

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.

Leaving your old life behind: the case of Michael J Fox

Today's Weekend Australian newspaper publishes an extract from Michael J Fox's book Always looking up.  (See also book icon to the right of this page.)

In this extract, Mr Fox talks about walking away from his former profession of acting in response to his dealing with Parkinson's Disease.

In fairness to Mr Fox, perhaps the excerpt was not clearly contextualised properly.  And I hasten to add that I have not read the whole book yet.

But in the excerpt he goes on a bit about "walking away" from his old profession of acting in a manner (in my humble opinion) of suggesting totally abandoning all that he might have elarned from that career.

...my resolution was to leave behind everything that I had resolved to achieve, acquire, and accumulate over the last twenty years.  I knew I wouldn't just be leaving the show [Spin City] - I would be putting aside my life as an actor.  While I always had difficulty thinking of myself as an artist, I took pride in being a craftsman.  I think I understood that even though, officially, my retirement was from Spin City and not my career as a whole, I couldn't just tweak the schedule or the working conditions and expect to take on another leading role in a television series or film.  That was it.  I was essentially pulling the plug.

I believe that people shouldn't be thinking of terms of turning their back on their old lives when they have to abandon an old career due to medical circumstances - such as illness leading up to a transplant.

Sometimes people can hang on to their "old" lives too much - as I believe might possibly have been the case with Jonah Lomu.

But there are skills and aspects of your "old" life that you should hang on to and seek to develop in your "new" life.  No sense hiding this under a bushel!  (This is what I try to get across to my mature-age students making a career change.)

You have a lot of skills and aptitudes that you continue to carry about in your head - even after you've left your old career.

I dunno - am I being unfair to Michael J Fox?

• The picture of Michael J Fox is from Celebrity Values

• John's disclaimer regarding commentary on health issues