Right ... everyone: off your butts and lets make this work

Discussions for Patients, Family, and Friends HD For Patients
1

I hate to have had to create that title but … its true!

To me … there seems some apathy at the moment - real or imagined.

We are really trying to do something GOOD for you guys - it’s through a website called WiZIQ. It’s a way to try and bring real time education to dialysis patients … not to nurses, not to doctors, not to hangers-on … but to you! OK … we may expand (if successful) to the other groups - but for now? … its you!

I hope Dori will, in time, forgive me posting this this but … hey … let’s mobilize!

If there are any of you ‘out there’ reading this … we are trying to get something going here … something which has real potential to make a difference. If we can capture some good speakers (and we have several in mind … I am just the go-getter at the pointy end), people who can explain complex issues in simple ways - and I think we are on track to do that - then you are the beneficiaries.

If you havent signed up to WiZIQ … can I exhort you to do so.

Its easy. Ask Dori. Ask Richard Berkowitz. Ask Bill Peckham. Ask Beachy. Ask Jessie St Amour. And others …

And … if you have contacts outside HDC … other groups … that you think might get a buzz from learning new stuff - tell them too. Dori wont mind. They do (I think) need to at least ‘hook in’ through HDC …

When Dori reads this and ‘forgives’ my indiscretion for writing this, she will give you directions how to do it if you don’t already know.

I don’t mean to blow my own trumpet too much ( this is NOT an Agar-centric exercise) but - I really think you’ll find it useful.

You may want to catch up first on Part 1 of the 2 Part series (Solutes) at WiZIQ … again, Dori or Richard will tell you how to do this.

The session coming up on YOUR 22nd July (YOUR TUESDAY NIGHT) is on Fluids. The first part isn’t essential but would REALLY set the scene for Part 2. Its permanently there on WiZIQ so if you havent got a password, havent logged on, again, the ‘team above’ will help you there.

Please … support this. It has huge potential to be useful - but it will ONLY do so if you support it from the outset. Otherwise, it will fade and die - and I, for one, would find that very, very disheartening.

Just … get in there! Please.

The next session is coming up this week. Again … this is not an ‘ad’ for me … rather, its an ‘ad’ for you!

John Agar

2

Hi Folks
G’Day Dr

I could not connect on the first talk ,due to what I understand were issues outside my control. I did catch the second talk with Nancy, but I’m not very good at keyboarding . For me it hunt and peck, for every letter. I had posted on can we or would we be able to post questions aheard of time if the people knew the subject. (No update on this) Then maybe someone could look over the questions/comments, so as to not have the same questions or comments repeated. Plus There seems to be a # of people who do just look on, I’ve talked to folks who work in the dialysis world but for work related reasons can’t post or will not post. Also the subjects may not be of a real concern to everyone. Lets face it , not everyone is concerned with the X’s and O’s of the procress. For me it legal issues that concern me here in the US. The idea that a medical center can toss people out at the units pleasure? Is not very reasureing. Plus, even though we have tons of centers only a hand full offer or even tell the people of home dialysis. If I did not have a computer or could not use one I would not have found this site. I thank this site and both Beth and Dori and all the great folks who are on dialysis that answered my questions from the start that got me into doing nocturnal. Plus You Dr, I found your site and had posted a question to you on nocturnal in 06 and got your reply. So your right , but it seems that from the web talk with Nancy that the people who are putting together the web talks, were still or are working some bugs .

I had email Beth on legal qestion web talk, and Beth asked for me to give more detail. Well for one what can a person do when the head nurse in your unit verbly tells you if you do not sign a paper stateing that you as a dialysis consumer had rules of the unit, or about infection control explained to you but in fact were not to sign a paper or she will discharge then and there. In my state I can not tape or record in any manner without the consent of persons with whom you are dealing with, without the person consent? Or what are the conditions that a unit can discharge a person not listing the comonsense ones(see my other post)? And do I have the right to see my Dr if I had one before going into dialysis or as I was told by Davita that I was under the order of the Dr who is assigned to the unit? And when you talk with you network people who tell you both orally and I have in writing a statement saying to me to "“Play Ball”? I’ve have stated that I have a formal complaint that is ready to go to my states AG office health dept. I have no reason to think that anything will come of it, since it will be my word VS the Dr’s? who’s word would you take? It has taken me two plus yrs to get my team to understand that I very aware of the ups and downs of medical issues having dealth with medical issues all my life.

thanks Dr your just what I needed, I have been working very hard to get to where I am at today and I had tried to get a job , but just got a notice from the company saying thanks ,but no thanks due to the concerns about me being on dialysis.

If I have misspelled things bare with me , I just woke and have a full day ahead of me but I check this site every am along with the NYTimes. And I wanted to post to let you know that we or at least I’m still out here
Thanks

Bob Obrien

3

No problem–I’ll just post that photo of you holding the fish! :wink:

4

Hi Prof. Agar!
As long as I have frequented kidney groups on the net, there has rarely been a unified effort to achieve various goals for dialysis patients. Few have been able to organize such an effort. Typically, there are more patients who read posts, but do not get involved in participating through responding. In the clinics I have been in, education is not freely offered and patients are very apathetic.

Who doesn’t like a big party with plenty of crashers? But when it comes to dialysis, most patients would like to get away from all things dialysis as their clinic experiences have been so negative. There’s a certain kind of patient who can rise above it all and not let it defeat him. I wish there was a way that all such patients could be rounded up and focused on this wonderful educational opportunity that is being offered. Maybe we could all brainstorm and try to think of ways to unite everyone. But ever since I’ve been on the boards, the pattern is some days there’s a lot of activity and most other times, the boards are dead. I haven’t met the person yet who knows how to unite dialysis patients.

Lately, a new thing is happening. Just like with your presentations on WIZIQ, other U.S. kidney groups are sponsoring educational presentations through web teleconferences. In the last several weeks, I have heard presentations by several notable American nephroloigists. I think this is just the greatest development. Because you know, the big kidney organizations have held annual and state educational seminars, but the average kidney patient can not attend due to health and the costs involved. But with this new media, anyone with a phone or computer can attend from the comfort of home.

I don’t know what the answer is, but I really care to see the WIZIQ presentations and the presentations of the other groups become a success. I would just like to say that until we can figure out how to reach more participants, although the current numbers may be small, I know for myself, this is the most promising opportunity for dialysis education that I have ever experienced. I have long wished something like this existed and now it does. If you change just one life or one at a time, that is a great contribution. That person can then go out and educate others.

Maybe a committee could be formed to channel our efforts to grow this media. I feel we must come together, as apart, we have less focus and are limited at what we can accomplish. Thank you for being the first professional to contribute to this worthy effort in conjunction with Home Dialysis Central… I hope others will follow your example.

5

Dori ,Rich
Can you post the link to the actual topic for Tuesday so people can register? I tried to copy it for the fellow Aussies on Dialysis Buddies but it seems about a mile long.

I reckon this fabulous innovation deserves all our support and people like John and Dori and Rich have done an amazing job to get these patient seminars up and running. It is so cool to be able to talk and listen in real time anywhere in the world, to people with intimate knowledge of dialysis, transplant and kidney disease who have great experience and the very best best intentions of improving our ability to live long and well.

We are indeed fortunate to have kidney specialists the calibre of John Agar, a decent and compassionate individual, who answers our emails on weekends and is so concerned he even posts here in the wee small hours to get us motivated! I guess in a few years this sort of technology will be commonplace but right now, we are at the cutting edge and its worth hanging in there even if the sound may be scratchy at times or if your download is a bit slow. I love it!!! But sorry Doc, I’ll be at work when this one is on as I think its Wednesday 10 50 Aussie time so hope it goes well.

And yes Dori, we would all love to see that fish picture ;0)

Cheers beachy (aka Mel)

6

Hi Melissa,

Unfortunately, the link really IS about a mile long, and there isn’t any way to shorten it. You could just point folks to the Home Dialysis Central home page (http://www.homedialysis.org) and they can click the link from there. That’s the easiest way.

I would really love to post that fish shot, but I won’t. :smiley:

7

[QUOTE=Dori Schatell;16321]Hi Melissa,

Unfortunately, the link really IS about a mile long, and there isn’t any way to shorten it.
I would really love to post that fish shot, but I won’t. :-D[/QUOTE]

The link may be a mile long, but Abraham Lincoln went a lot further through mud and snow to get his education. Clicking on something a bit longer will do us some good.

We understand this is a process and the longer we can keep it up, the more will benefit. It’s natural that we would want the webinars to be a success — not for us necessarily — but for others who will gain the most. The webinars were borne out of the idea that if dialysis patients were given access to world class specialists who usually talk to each other at professional events we would all gain better understanding.

It’s true that most patients dialyze to live and don’t want their lives completely taken up by the process, but with a greater understanding of the process one can live longer and healthier. The professionals who put a tremendous amount of effort to simplify difficult subject matter for us ‘non-professional’ patients can also get a new perspective by communicating directly. It can be kind of a win-win situation, but in reality the patient is the bigger winner. As the clothier Sym’s says ’ An educated consumer is our best consumer’, we patients need to be educated too.

I’m convinced that as the word gets out about educational opportunities like this, that more and more people will join in. As with anything else, when someone gets a benefit out of doing something they will want to continue to get that benefit.

And about that fish picture, I have it — and I’m not sure if John would appreciate it if it got posted because the fish really is better looking!

8

In the future you could use

http://tinyurl.com/

to shorten it. I believe I learned about this from Bill and Gus.

Erich

[quote=Dori Schatell;16321]Hi Melissa,

Unfortunately, the link really IS about a mile long, and there isn’t any way to shorten it. You could just point folks to the Home Dialysis Central home page (http://www.homedialysis.org) and they can click the link from there. That’s the easiest way.

I would really love to post that fish shot, but I won’t. :-D[/quote]

9

Keep up the good work, Rich and others. Erich

[quote=Rich Berkowitz;16322]The link may be a mile long, but Abraham Lincoln went a lot further through mud and snow to get his education. Clicking on something a bit longer will do us some good.

We understand this is a process and the longer we can keep it up, the more will benefit. It’s natural that we would want the webinars to be a success — not for us necessarily — but for others who will gain the most. The webinars were borne out of the idea that if dialysis patients were given access to world class specialists who usually talk to each other at professional events we would all gain better understanding.

It’s true that most patients dialyze to live and don’t want their lives completely taken up by the process, but with a greater understanding of the process one can live longer and healthier. The professionals who put a tremendous amount of effort to simplify difficult subject matter for us ‘non-professional’ patients can also get a new perspective by communicating directly. It can be kind of a win-win situation, but in reality the patient is the bigger winner. As the clothier Sym’s says ’ An educated consumer is our best consumer’, we patients need to be educated too.

I’m convinced that as the word gets out about educational opportunities like this, that more and more people will join in. As with anything else, when someone gets a benefit out of doing something they will want to continue to get that benefit.

And about that fish picture, I have it — and I’m not sure if John would appreciate it if it got posted because the fish really is better looking![/quote]

10

[QUOTE=TheRiverdude;16377]In the future you could use http://tinyurl.com/ to shorten it. I believe I learned about this from Bill and Gus.
Erich[/QUOTE]

Erich, that is so cool! (Clearly these folks have way too much time on their hands, but I’m kind of glad they do). Thanks for sharing. :slight_smile: