You've probably noticed that the posts have dried up.
I've been very fortunate in finding a new job in my new home town. At this stage, its only running until mid-December. This, plus the fact of a conference presdentation in mid-November, has consumed my available free time.
I sincerely hope to re-start on this by the end iof 2010. I have met some interesting people via this blog, and I kid myself that some of the many visitors to this blog find it interesting.
In the meantime, I am gradually writing a backlog of posts to keep the blog well-supplied when it re-starts.
May I extend my sincere apologies to you if this temporary halt has caused you any inconvenience.
This device is not a substitute for a transplanted heart, but it givers the patient extra time before a transplanted heart becomes available.
Artificial hearts were, until now, extremely cumbersome hospital-bound devices. Whilst I am not a medical expert, it seems t this untrained eye that this option gives everyone involved - patient, doctors, family - some clearance time.
Well done ! And I do hope that he long continues to enjoy his mum's cooking.
You will recall that the former Prime Minister of Australia, Kevin Rudd, was nominated in this blog as a Great Figure in Transplant / Non-Transplant History.
This was due to his work in establishing the Australian Organ & Tissue Donation & Transplantation Authority - working under the name DonateLife.
Mr Rudd spoke more on this tonight on the Channel 7 current affairs program Sunday Night.
Mr Rudd certainly demonstrated his sense of humour when asked what would have happened without his own aortic heart valve transplant:
I'd be six feet under and I'm sure that would've been a joy to many of
my foes in politics.
Commenting on how, in his valedictory speech, he almost lost his composure when recalling the establishment of DonateLife, he remarks:
Yeah, well, I've spent a lot of time with people waiting for a
transplant, really good people. So if you're given a chance as prime
minister of the country to, you know, make a difference then you cannot
do that without thinking of these faces because they're depending on you
to get it done.
He also comments on the indifference that people who have not experienced transplant issues first-hand can show when asked to consider this issue:
All those sceptical cabinet ministers sitting around a table thinking:
'What's he on about?' I said: 'Well, we're going to do this because it
means a lot for literally thousands of people.' So that's my hope, roll
the clock on three years and we're out there as world leaders. If not,
I've failed but I've tried.
This is certainly true of my own experience. A number of my friends have unpromptedly stated to me that they have moved from being either indifferent or, indeed vaguely antagonistic of transplantation to a position of ardent support - simply through witnessing the experience of Pauline and me.
Mr Rudd also mentions the difficulty of the patient's supporters and families:
Thérèse
[Mr Rudd's wife] still finds it pretty emotional to talk about these things. I
think it's often harder for immediate family. The one that's under the
knife, that's got its own challenges but for your loved ones I think
it's just much harder. I think she [Thérèse] found that and still finds
it hard to talk about because suddenly as a young mum with two little
kids starting up her own business, what's going to happen?
Again, this perception is spot on. In some respects, with my transplant, I had the slightly easier ride - just sit back and do as I was told. But Pauline had to deal with all the stuff surrounding the event - from the practicalities of dealing with a dodgy hotel owner who was not delivering to our transplant hospital the standard of post-discharge care that he had promised (and for which he was being paid), to the challenge of seeing one's spouse going through a transplant.
This month's nomination for Great Figure in Transplant / Non-Transplant History is the American actor Gary Coleman (1968 - 2010), best known for his role in the television sitcom Diff'rent Strokes.
May I say up front that I was not a fan of Diff'rent Strokes, so do not know much about Mr Coleman.
But in reading the obituaries that followed his death earlier this year, I noticed that he sought to overcome his early illness - focal segmental glomerulosclerosis (FSGS) - and the debilitating effects of this illness in his career and in his life.
Certainly he was not always successful (notwithstanding the huge success of Diff'rent Strokes - but at least he was prepared to have a go.
As a side issue, if (and this is a very big if) the unverified MSNBC report listed below is correct - that his fall causing his fatal injury occurred after being unsteady on his feet after a dialysis session - then this also serves as a salutary lesson in the importance of resting and being cautious after dialysis.
Reader's advisory: The links at the foot of this page go to images which may distress some readers.
This week's news included the story of "Oscar", a 31-year-old Spaniard who is the recipient of a major face transplant. This involved composite tissue transplantation - including, bones, cartilage, teeth and skin.
A very good article in The Australian newspaper summarises the ethical issues involved in such a procedure.
One that has certainly exercised my mind is the issue of a perceived "identifiable" transplant of an external organ(s), rather than the completely anonymous transplant of an internal organ.
Even though this is, in dealing with the face, a fallacy - the recipient's underlying facio-maxilliary structure will alter the new face's identity over time - nonetheless there is an entirely understandable issue of whether some families of prospective donors will find this too confronting:
"Transplants are laden with meanings that have profound consequences for individuals and their social relationships," he [Professor Paul Komesaroff] says. Surely, the transplant of something so drenched in meaning as a face will heighten the trauma.
Certainly the ethical issues need to be discussed and analysed. And i sincerely hope that transplant co-ordinators and educators will recognise this issue and tackle it.
But a person who is living with terrible disfigurement from accident or birth defect would want these issues to be resolved firmly.
This blog has been consistently opposed to the practice of organs-for-sale. It is a dangerous, foolish, and unsafe practice.
Probable outcomes of transplant tourism include:
Decisions based on commercial imperatives rather than best medical practice
Compromised screenings that might allow unsuitable donors - possibly spreading tumours, hepatitis B, and HIV
Transplant imperialism, dazzling prospective donors with fistfuls of dollars and continuing the impression that many Westerners promote of having more dollars than sense
Breaking the law, here in Australia and in many other nations
Sending people to penury as life savings are destroyed and family homes are sold off
Indeed, one of the reasons that I moderate comments on this blog is to prevent the occasional appeals to buy (or offers to sell) organs that would otherwise be instantly published.
Thus I was interested to read about the experience of Tony & Saide Haddad of Sydney, who lost their life savings over an unsuccessful transplant-tourism kidney.
Arising from the surgery, Mrs Haddad developed aspergillosis. The treatment for this life-threatening condition involved the rejection of her transplanted kidney.
Mrs Haddade's Sydney doctor, Yvonne Shen, notes that
The outcomes are often terrible for people who go abroad. I've seen
patients … come back and test positive for HIV or hepatitis B. The level
of screening and monitoring that is done … is very much less than would
be carried out here.
The article notes that long-term survival rates for transplant tourists tend to be lower than those treated in Australia, where 98% or patients survive at least 5 years.
Folks - dialysis and kidney disease is tough. But transplant tourism is just not worth it.
Some folk might think that I do not have the right to make such pronouncements. In response, I would point out that I was on dialysis for 5 years whilst waiting for a kidney transplant.
More recently, I had drawn to my attention (thanks to Bernard Boerma) his 2005 Occasional Address to graduating students at Stanford University.
In this speech, Mr Jobs reminds us of our responsibility to perform as best we can. After all, we all have a finite amount of lifespan and we should be using that time effectively.
Whilst Mr Jobs is no doubt more consumed at the moment by problems with the iPhone4 (and even the iPhone3G), nonetheless he continues to be a great example of how an organ transplantee continues to contribute to society.
Last night we in Australia saw the final edition of this series on the incongrously-named channel GO! , 15 months after screening in the USA.
Noah Wyle's character Dr Carter has recovered from the effects of kidney transplant surgery, and has launched his philanthropic medical care centre named after his stillborn son.
He is hanging around his old stomping grounds at County General Hospital when a major disaster is called in - 8 people minimum injured in an electrical sub-station blast.
This segues to the final scene, providing a curtain call for the main players.
At the risk of being pedantic, I ask - should an organ transplantee (who therefore has a compromised immune system) be a medical practitioner? Especially a trauma doctor, with all manner of bodily fluids flying about?
One thing that dialysis patients have to come to terms with is how to profitably spend their many hours of enforced inactivity without going crazy.
My tactic, initially at least (before I switched to overnight dialysis), was to read a lot, listen to lots of music and watch some (but not too much) television.
This was in the days of pre-broadband internet, and certainly before Web 2.0 - so the internet actually did not figure in my plans.
Now that wireless broadband is commonplace, many people make use of this in one form or another.
Indeed, my friend and peer Miriam Lippel Blum, describes what it is like to be suddenly cut off from this option:
Friday, July 2, 2010 3:22 PM, PDT ...our whole neighborhood was incommunicado due to the accidental cutting of a major phone
cable nearby by some construction
workers. It was very annoying to not have the internet available to me
during those long dialysis hours. I thought I would lose my mind! Yes, I
confess, I am a child of the technological
age, I love my computer and miss it when it's not working.
This brings me to introduce one man's very inventive method of whiling away long hours. This was not in a dialysis context, but was rather a extreme context that is very noteworthy.
Christiaan Van Vuuren (pictured above, on the right) was recently released from Sydney Hospital after being quarantined there for six months - yes, six months - following exposure to tuberculosis.
How did he entertain himself? by setting up an online persona called The Fully Sick Rapper - complete with YouTube channel, Facebook page and Twitter feed.
He entertained himself, fellow patients, hospital staff and thousands of people across the globe by producing assorted raps, rants, and observations.
In doing this, he also raises money for support of childhood vaccinations.
Now that he has been granted parole, he is hoping to use this body of work to gain entry into the entertainment or social media industries.
In reading about this gentleman, I was particularly impressed by the virtual dates he organised with assorted lady friends. He would dress up, his date would dress up at the other end of the webcam, and they would sit down to a meal shared across cyberspace.
Of course, not everyone would have the energy or the chutzpah or the technical ability to do this.
But it certainly demonstrates one method of whiling away the hours!
Picture credit: from the Fully Sick Rapper's Facebook page
This nomination is slightly early (usually happens on the 1st Saturday of the month), but I would like to nominate The Hon Kevin Rudd MP as a Great Figure in Transplant / Non-Transplant History.
This nomination comes as Mr Rudd was yesterday fired from the role of leader of the parliamentary wing of the Australian Labor Party, and therefore also lost the job of Prime Minister of Australia.
(In the Westminster model of parliamentary democracy that we follow in Australia, the leader of the majority party in the lower house of parliament is invited by the Governor-General to form government.)
This has already been instrumental in beginning the reversal of the very poor rate of organ donation in Australia - one of the poorest in the Western world.
And Mr Rudd mentioned it in in his valedictory speech yesterday, 4 minutes & 10 seconds into his speech.
I’m proud of the fact, and some people have probably never heard of this
one, that we have a National Organ Transplant Authority.
As somebody
who borrowed someone else’s aortic valve I feel a particular
responsibility for that. There’s nothing like having a bit of somebody
else in you, it focuses the mind and in my case also focuses the heart.
What I’m really pleased about in the last two months is the organ
donation rates for the first time have started to rise. People now are
getting transplants because we chose to make a difference.
As one of the ever-grateful recipients of a donor organ, I would like to publicly thank Mr Rudd for putting this issue before the people of Australia.
Thanks, Kevin.
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Transcript of valedictory speech, The Australian [newspaper], 24th June 2010
Vision of valedictory speech, uploaded by fb2121 on YouTube:
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.)
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