New book: Help, I Need Dialysis! by Dori Schatell, MS & Dr. John Agar

Has your doctor told you that your kidneys are failing? Does the idea of dialysis scare you? Or, are you on dialysis now and not happy with how you feel?

If so, this book is for you! Learn how your treatment choice can affect what you can eat & drink, how many meds you need, your energy level & sleep, sexuality & fertility, hospital stays, and survival. When you understand how & why dialysis works, you can choose a treatment that fits your lifestyle & have the best possible life with dialysis.

$14.99 + s/h (Ebook coming soon!) Order your copy here: http://www.lifeoptions.org/help_book

I received my copy in the post today. The book turned out brilliantly…congratulations to you both! It’s going to help an awful lot of people, I know!

Dear MooseMum

Thanks for your enthusiastic support

I hope you can persuade others to take a look at it, buy a copy, tell their units, their support teams … and get the word out there that it really is the only generally available book ‘out there’.

Let those at IHD know about it … and tell other patients. We are very hopeful that it will help patients to have some better information about dialysis, their choices, and their treatment expectations.

Cheers

John

I went over to IHD and told everyone about the book. Two points have surfaced…1. There was disappointment that IHD was not mentioned as a source of support. I can understand why a site named “I Hate Dialysis” might not be included in a book that is supposed to foster hope, but there needs to be a place for people to vent when they are unable to feel great joy about what the future holds for them. It is not evil or weak to feel overwhelmed and to need a kind word or a “I know how you feel because I’ve been there and I’ve done that.”

I know that some people in the renal advocacy world view IHD as a whingeing board, but it is one thing to get support from a good resource like this book and another equally valid thing to get support from a community of people who are walking in your shoes. It’s about getting different kinds of support from different sources, weaving your own net out of various materials. Your spouse may love you, but if s/he doesn’t know potassium from phosphorus, the people who DO know the difference and who LIVE the difference can be valuable. There is no better site for this than IHD, and I think the site deserves respect.

Second, an IHD member wondered if there would be an audio version of the book. Great idea since so much ESRD is due to diabetes which also affects vision. Any thoughts?

Thanks again for a great new resource.

Firstly, thank you for support and for letting the people at IHD know about this new resource.

We hope it will be another useful resource for those living through CKD and into dialysis … adding, we hope, a new dimension to the ‘choices’ vaccuum that has afflicted especially US patients facing the inevitability of dialysis - and the decision about ‘which’ dialysis.

I am sorry that IHD was omitted as a resource: it was not meant as an intentional slight. It is difficult to include all of the resources available … and indeed, despite my co-authorship, the many excellent Australian, Canadian and European and UK resource opportunities ‘out there’ were also not included - for to do so would require an almost endless list.

This is not an excuse for the oversight - though once overlooked in a printed book, there is little we can now do to redress, other than to say that we apologise. We fully recognise and concur with the value of a peer-group cyber-site/chat-room - a peer mechanism that provides enormous ‘been there, done that’ support to others experiencing the same pathways … and we hear your frustrations that it was not included.

What else can I say but that I am sorry.

As for an audio version - no, there havent been plans for this and I suspect the issues will be a combination of both funding + resource availability, and time availability.

We are hoping (in the future) to create an App for Iphone and Ipad to act as a choice and options aid … but this is likely a little way away yet. As a 100% full-time clinical nephrologist with my own long list of daily consults, ward service, unit and hospital responsibilities, research and speaking demands, there is only just so much time in a day …!

Oh, no apology necessary! It’s just that I’ve heard too many stories from too many IHD members who wanted to put an IHD poster in their clinic but were told it wasn’t “appropriate” because it was too “negative”, and I couldn’t imagine that you and Dori felt the same. I’m glad to hear that there are too many support sites to name in just one book; better that than to have too few, right!?

There are new members joining IHD every day, which is rather sad as it makes you realize how prevalent CKD is, so I will make sure to introduce your book again every few months. I really do think it is brilliant!

Hi MooseMom,
Try using Google’s Alexa for an audible experience of the ebook version. I have personally been purchasing audible versions of various ebooks for a few years and recently tried using Alexa on multiple books that do not offer an audible version. Surprise, surprise, Alexa is great. Plus it’s configurable so you can change the voice and the reading speed, etc. You start and stop it easily and start again right where you left off. Works on a laptops (Apple and non-Apple), iPhones, iPads and various Alexa based devices.
Sincerely,
Craig

Thanks, Craig–I had no idea that Alexa could read eBooks out loud. You’ve educated more than MooseMom with your post!