Publishing a Dialysis/Transplant book in Australia

By Melissa Darnley

When I was first diagnosed with kidney disease (FSGS) 17 years ago I went into the usual tailspin then started searching for answers and others with my condition. The thought of eventually needing dialysis filled me with dread because I knew nothing and no-one on dialysis. These were the early days of internet, so that was no help. The doctors were no help and the books available.......yuk, they were terrible. Scary things with the odd sketch of rather elderly people going for a slow walk or something equally uninspiring! Where were the real people, the people getting on with their lives, having fun, traveling, enjoying life with family and friends?

I pulled myself out of these depressing feelings of loneliness, didn't talk about what lay before me and got on with my life, but I always felt for those people like me, first diagnosed and no support, leaving those Nephrologists offices after that first visit in shock and going it alone.

So I decided to search out dialyzors and transplant people that live their lives well and asked them to tell me about the highs and lows of dialysis and transplant, their travel stories, their families and their fears and hopes for the future. Everyone was very excited to contribute including two overseas contributors, Pierre from Canada and our very own BILL PECKHAM heads the list with a special place in the Introduction! I then compiled their stories and real photos for all to see.

In Australia we have a National organisation called Kidney Health Australia that was as excited as I was about seeing a book of kidney patients stories and they agreed to publish it and so the long process of finding donations  to fund the book began. Two years down the track with several of the contributors now transplanted and several now deceased we are nearly there! I am reliably informed that the book is very nearly ready to print after much tooing and froing,much communication and many permission notes and should be available Australia wide as well as available as a download on the Kidney Health Australia website within the next few months.

I know stories like Bill's will inspire many Aussies to get out there and enjoy life and make the most of every day!
Cheers
Mel

Comments

[Bill Peckham]

Good on ya Mel - thanks for guest blogging. I can't wait to see the finished product.

Could you give us a idea of the layout of the book and where/to whom it will be available? It isn't just quotes from your contributers. How did you get all the content together?

Cheers,
Bill

[Mel]

Hiya Bill
Apparently all will be revealed on 21st April! Finally a date to see the finished product.

The book is in sections from first diagnosis,initial treatments through types of dialysis, living well-travel, work and leisure, relationships and family,carers perspectives.transplant and looking forward to the future.Yes, it is mainly all quotes from different people as I wanted their stories. There is enough other stuff out there from the medical side of things but not much from those of us at the pointy end.

Kidney Health Australia will be responsible for marketing the book to patients, doctors, pre dialysis clinics and dialysis units but anyone will be able to access it as a download from their website.

I initially hoped it would be available free in hard copy to all but as KHA runs as a charity this was not possible. But I am told that the cost will be minimal to purchase and it will be available Australia wide.
Cheers
Mel

[Bill Peckham]

That's great Mel. Any chance it'll be available electronically? PDF perhaps?

[Mel]

Yes Bill. It is my understanding that it will be available as a PDF. Will let you know.
Cheers
Mel

[Mel]

Hi there Bill
Have you received your copy of the book yet?
Cheers
Mel

[Bill Peckham]

I wonder if it is on the front deck? I come in the back so packages can languish when they're delivered to the front. I'm dialyzing right now - I'll report in the morning.

[Josie S]

Hi Bill and Mel,
Happy to hear about the book.
My father died fourteen years ago, 64 years old, the doctors told him that he was 'too old' for any attempt of transplant, which I now know the truth that he was only a number. He was on dialysis only for two years.
Will the book stress the fact of what fluoridated water does to our kidneys????
The government decided to fluoridate our water without our permission why should we have to pay for any literature at all, why should we have to pay to improve our health after what the fluoride has done? why should we pay to have our teeth fix after what the fluoride has done to them.
We pay for our water and trusted the government to do the best for us.
Why do we have to follow America? Other countries have woken up to the facts and removed the fluoride. They also have warnings on toothpaste.
Why don't we????
They should be accountable for what they are doing.
I wish you all the best.
What water do you drink and use for your dialysis?????????
Josie S