Melissa DARNLEY (compiler): Yesterday Today and Tomorrow: Personal accounts of people living with kidney failure Reviewed by Anna Bennett. Published by Kidney Health Australia. (Convert Australian dollars to your currency.)
On behalf of my lovely wife and I, may we wish all our readers - casual and regular - a very happy fetive and holiday season.
And this applies whether you are just exiting Hannukah or entering Christmas. Or indeed, if you are supporting Cosmo Kramer's support of the holiday of Festivus ("Festivus for the rest of us!").
The top of the Season to you, folks!
The image of Father Christmas riding a surfboard was originally uploaded by jpikulski on photobucket
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.
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.
We’re having a short vacation in the city of Adelaide, capital city of the Australian State of South Australia – 1320 km (820 miles) west of Wollongong.
This has given me cause to reflect on the very different (to the rest of Australia) system of organ donation in South Australia.
Today it is appropriate to honour a truly great figure in transplant history - my wife Pauline.
An important way of getting through a major obstacle in life is to get your loved ones onside - partner, family, friends, workmates. Pauline is an outstanding example of this, going way beyond the call of duty.
(And she had no prior warning of this trribute, by the way.)
Recently I completed my formal re-training by graduating from the University of Wollongong with a TESOL (Teaching English to Speakers of Other Languages) teaching qualification.
This is the formal end of a pathway I started on in 2003 when I first enrolled in the University's M.Ed. program in adult education & training.
But its a pathway that I would have found impossible to reach without the support and love of my wife Pauline.
And indeed, this support goes back further to the period 1998 to 2002, with the days of home haemo-dialysis.
I was fortunate to be able to do this at home. But again, this would have been plainly impossible without Pauline's support.
In those years, Pauline deliberately slowed her career right down simply so she could be a support.
Most dialysis nights, I got home from work to find that she had mostly or entirely completed the set-up. And then she would strip the machine if I had to race to work next morning.
And this from a lady who was previously barely able to tolerate the sight of a paper cut.
Then there were the interminable hours sitting about clinics when we were on holidays.
And the big day when the transplant call came out of the blue. A simple country drive for a picnic suddenly became a dash to Sydney and months of disruption.
All through this, Pauline came up smiling.
And she could have avoided all this whilst we were engaged back in the early 1990s.
During this time, the magnitude of my kidney problems became apparent. I did what I believed was the honourable thing and indicated to Pauline that I would entirely understand if she wanted to withdraw from our engagement.
Her response? To tell me that I was talking nonsense, and that we need to decide on invitations by the end of the week.
From the bottom of my heart - thank you, Pauline. I love you very deeply, and your role as a Great Figure in Transplant / Non-Transplant History is highly deserved.
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.
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.
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.
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.
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.
The journal article concerns two popular myths concerning organ transplantation as portrayed in popular culture:
The purchase myth: "the rich and famous can buy their way to the top of organ waiting lists"
The relationship myth: "friends and family of medical professionals receive organ transplants quicker than other individuals"
The abstract states, interestingly, that the research detailed in this journal article indicated that regular viewers of Grey's Anatomy are in fact less likely to fall for these myths than those who do not watch this program.
It is true that from time to time I meet people who have fallen for other transplantation myths. In my previous career I had one workmate who regularly peddled a particularly untrue and pernicious myth.
I have also in the past been critical of programs like Grey's Anatomy for peddling myths in portrayals of organ transplantation. But maybe I now have to eat my words.
Maybe some scriptwriters are recognising a public education role after all.
But I am still dismayed of programs that:
Show transplant recipients (and kidney transplant donors) bouncing around the next day as though they have had an ingrown toenail removed. (And I've seen this one on the Australian TV medical drama All Saints - a long time ago when they still actually had an opening credit sequence.)
Show dialysis patients suffering no greater side-effects than one would receive from using a hair-drier
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Resume of Dr Brian Quick, author of the article under discussion [PDF version] [HTML version via Google]
Last week I had my quarterly check-up at my transplant hospital.
All is going well apart from the fact that m weight is gradually creeping up. And this isn't wet weight (fluid retention) - it's good old fat cells.
The doctors are, justifiably, unhappy about this.
I must confess that I have been chickening out a wee bit on parts of the walking to and from work, due to the rather fierce (by Sydney standards) winter that is just concluding.
The doctor who examined me had an interesting perspective on exercise - don't worry about programming in the gym, just make sure you do that 80 minutes walking 3 times per week when you walk between home/work and the railway station.
People leading busy lives can fail at exercise if it becomes too much of a scheduled additional activity.
The solution? Incorporate this into your other regular daily activities - such as walking to and from work.
I must admit - when I was really focused on getting ready for the City2Surf race and actually doing this full 80 minutes walk (with backpack) per day, I could feel this benefit actually working (after a while!).
I was also sleeping better.
So the challenge for pre-and post- dialysis patients who might have trouble getting time for exercise is to try to build this into everyday activities - walking to work or to public transport, taking the stairs, walking to your colleague's office instead or using email or the phone.
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