I try this before

I try to say that we on dialysis need to get on news or talk shows, not just local things. I know about renal network but how many people outside of dialysis know about it? I understand that the Green Ribbon stands for many things one is kidney problems. We all see the Pink Ribbon and most know right away what it stands fors, and when we the Yellow Ribbon we know what it stands just as fast. Plus we seen bumperstickers about places people have gone or love to go. I know that Epoman and Gus were looking into tee shirts.

Can some type of poll or I don’t what be done to get a ideas out there .The folks who run this page might be able to help give advice. Can some of the groups that are looking out for us help with $$$

I’m thinking something simple, along the line of the ribbon with words on it
bobeleanor :?:

Currently, right now at this moment the HOT TREND is home made videos and the place where its getting huge attention right now is http://www.youtube.com … millions of people are visiting YouTube daily… its one of the reasons awhile back I made a post encouraging home dialysis patients to start making their own home made videos. Don’t be afraid! Do it! …Once you have your video uploaded on the net you then start sharing it around…this the easiest, most powerful way to express and spread the word about the goodness of what home dialysis can bring…

Hey Gus

I have heard of this place never been there. Is there anything you do once on youtube to see dialysis? What are your thoughts on a ribbon? Maybe in the videos folks could weara ribbon?

bobeleanor :?:

Once your in frontpage of youtube you can use the search feature in the upper cornder and search the words dialysis…

You can also register there so that you can rate, comment on videos you see there…you can also upload your own videos and share them…

Ribbon idea is alright, can be overlayed ontop videos peopple make…

Bobeleanor can you be more specific on what your trying to achieve. Is it more home programs? Is it more user friendly programs?

Hey Marty

I’m working on a reply

. I just want to make sure I have done to my best. This is vey important. To me it is about getting PT/consumers rights back. I got the RSN news letter, where they did a thing on how long we must wait in a doctor office and how to handle the wait. That is really been at the heart of this for me. That we Avg. person who works 5 ,6,7 days a week to make ends meets at time or two or three jobs at time. And we are treated like dirt. By the people we electric unless we have a power group. By the doctors we make an appt. a year or 6 months aheard and we get to office in time and have to wait a hour. not for something major has happened, it just the doctor is late and overbooked.

bobeleanor :smiley:

So far as trying to shorten the time that you have to wait at the doctor’s office, do your best to get the first appointment of the day or an early appointment. The later your appointment is scheduled in the day, the more likely it is that your doctor will be late. Doctors get hung up at hospitals with new admissions or patients or family members who want to know about their illness or treatment. A patient with an emergency may have needed to be added to an already busy schedule. It’s also possible that they had an office patient who took more time than scheduled.

I think everyone wants to have sufficient time with his/her doctor and everyone’s time is valuable. We encourage patients to ask questions. Some do and some don’t. In my opinion, the number of patients doctors are scheduled to see in a day and the complexity of the issues related to kidney disease that they must address in a short time make it difficult to schedule one patient every x number of minutes. Ask the person scheduling appointments how much time they allow for each patient with the doctor. If that doesn’t sound like enough time, ask them to allow more time for you to talk with your doctor so the person following you doesn’t have to wait. If every patient did this, it could help reduce everyone’s waiting time.

I think you’ll find this interesting. Yes Drs. to have emergencies and patients do run over but let me tell you a story. About 3 years ago a big clinic we go to started to have the doctors give the patients a questionnaire to fill out. One of the questions was how long did you have to wait to see the Dr. Once they took it serious that waiting time has drastically reduced. Unless there is a real emergency you don’t have to wait long to see the doctor when you get there. In fact at every reception desk in the doctor areas there is a big sign which reads…If you have been here 1/2 hr. or more and haven’t seen the Dr. let us know.

That’s terrific! It would be interesting to know many patients they schedule per doctor per day and how long they allow for the doctor to see each patient. I bet patient satisfaction increased. I’ve read that when patient satisfaction is higher, lawsuits are less likely. Maybe it’s because doctors spend more time with their patients finding out what the problem is. One study found that the average time it takes for a doctor to interrupt and redirect a patient describing a complaint is 23 SECONDS.

Here’s info for doctors on how to communicate with patients that includes this last statistic and provides 9 tips including assessing what the patient knows, wants to know, being empathic, slowing down, etc. It sounds like the clinic you refer to must have read this article.

Instead of getting caught up in Patients Rights and Rules, Policies etc. I would like to see the Medical World and the Patients work for each other.
I appreciate the fact a Drs. time is important and I think I should be able to see him close to the appointment time. But I think it is equally important that I go to him prepared with my questions, prescriptions list etc. to make his job a little easier too. In my opinion there shouldn’t be rights and wrongs it should all be about everyone doing what they can to look out and help each other.

Hey Folks side note on wait in doctor office, I found that once a GP get started he gets lazy and when you set a time for 9am and doctor stolls in at 9:30, then pill pushers. Should they have to have day like saturday or sunday to convince the doctor which new pill will cure all. Sorry

Hey Marty
I saw on Angie’s Kidney the green ribbon. This page should get behind the green ribbon. I’ve been an organ donor for years. I posted before that we on dialysis needed a famous spokeperson and that with TV ads showing everyday people doing dialysis it could bring dialysis out into the light. If we could get the Green Ribbon to stand not just for organ donor, but dialysis also.

When you see the Pink Ribbon you know right away it’s for breast cancer. My wife just had both of her breasts removed due to that cancer. Even before this happened to us I knew what the Pink Ribbon stood for. Major league baseball and football players have for a long time been great when it comes to helping make people aware of health issues that everyday people face and now BMW is getting into the Pink Ribbon thing on cars that people can test drive. Plus M&M candy puts up X #'s of $$ to breast cancer. You see ads on TV with women who tell their story and how many years they’ve been free of cancer. You wouldn’t believe the support my wife has gotten from the American Cancer Society. Booklets, brochures on free classes and meetings, lists of stores that sell what she needs - she even has a “buddy” who calls her to see if she has any questions or needs any help finding out information!
You see the TV ads for men and sexual problems.
Katie Couric went on live TV to show people “… an on-air colonoscopy. America followed her example: a study released yesterday found that rates of the screening for colon cancer jumped by more than 20 percent.” By JOHN O’NEIL
Published: July 15, 2003 nytimes.com

Everybody sees the ads for JD and Diabetes but what you don’t see is dialysis. There is nothing to be ashamed of by being on dialysis, and until we start seeing ads and people doing dialysis both in home and in center we won’t get the funding we need to improve in center treatment and access to home hemo. I looked at youtube.com and it is ok, but I’m thinking mainstream. We need input from Bill, EPOMAN, Gus, Angie’s Kidney, Pat Colongione and the folks that run this page to help with input on if it could be done for next year’s kidney week. A live broadcast . . I don’t know if it could be worked out by then, but if all folks on this page and the makers of the machines got behind this idea … maybe? Maybe 8 or 10 pt/consumers, 4 or 5 men and 4 or 5 women in New York (or they could do remotes if better) set in one room where two pt/consumers at a time could have everything ready to go, then when the news person points to them they, along with a doctor I guess, (LOL) could show how home hemo is done. Also, pick a center to show people in center. We could try and get all the networks to run on different days or whatever. Where are all the support groups (DPC etc.)? Will they help us get dialysis into the light?
bobeleanor :idea:

Are you aware that mainstream television is involved in youtube.com? On the other hand, in-center dialysis is quite a scary scene! People will get scared away!! :lol:

As for home dialysis, the scene is a bit more comfortable and that passes for mainstream media!

The best way to achieve what your trying to do is get involved…record a video about your story, about what you think about home dialysis…these videos will help other newcomers to the community…

For example, locally in my community there’s a few people who lost their kidneys but don’t know nothing about dialysis so I shared my video and Bill’s video with them…now the more home videos out there the merrier! Once there’s many home dialysis videos out there you will soon see mainstream media talking about it… 8)

Lolol davita centers are very scary. And yes I knew of youtube.com and the networks. But I have not yet seen a person on msnbc or fox or cnn doing dialysis thanks to youtube.com. I’ve seen goofy stories on these places by youtube.
But from the clip ( clip being the key word) I saw of Bill’s center that looks like a great center. Listening to Bill and seeing what that center offers, they might be a model as to what centers must be not should be. We need a big push Gus at least once a year. We need the major cable and network stations to try at least once to see what happens. What do we have to lose?

Right now I’m in group ins. with my wife work place, covering my dialysis. And the dialysis company is chargeing the ins company 4x what they get from medicare. Why, the ins company ups the price we pay without worrying about gets votes. Maybe you did not see the NYT on 10/16/06 in which ins. "Industry experts are estimating that profits may reach $60 billion, on a combination of higher premiums " “By JOSEPH B. TREASTER
Published: October 14, 2006 NYT”

Gus meaning no disrepect. But do you read the Times or watch C-span or PBS. Youtube .com to me is just another fad that will come and go. Sure it will be out there, if you read or watch these other things you would see the trends on on this stuff. That why I think it needs major cable and network help to get the message out. The bottom line Gus and everyone is how best to get better home dialysis(more) and better tx(more) for those still in center. My day starts with NYT online then c-span, then jump around to the rest. I don’t rely on one source. No one should!!!
bobeleanor :smiley:

Hey Gus

Just for lol check it out.

bobeleanor :smiley:

Bob have you ever tried e-mailing someplace like CNN and asking if Dr. Sanjagupta could do a show on dialysis. When we first came home on nocturnal I contacted our local news stations and dad and I were on a TV showing slow nocturnal. Then they showed in-center patients and asked them if they would prefer to be home.

There have been several pieces on home dialysis on local news shows. Google “dialysis TV” and you’ll find some. I’ve seen others. I suspect these may be promoted to the local news by whichever company makes the dialysis machine (most recently they’ve been about the NxStage) or by the dialysis clinic that is training the patients.

All diseases are competing with each other to get their stories told. The National Kidney Foundation and I believe other kidney organizations work hard to get kidney disease in the media (newspapers, magazines, and TV). One barrier to this is that even though in 2004 there were almost 500,000 people with kidney failure, this number is a relatively small percentage of 300 million Americans (.2%). Compare kidney stats with hypertension (33%), cancer (2nd leading cause of death after heart disease), or diabetes (7%) and you can see how difficult it is to get kidney disease in front of people.

Getting started may take getting the NKF and other kidney organizations to focus as much attention on dialysis as on chronic kidney disease (early detection and prevention or delay or kidney failure) and transplant. One barrier has been that preventing or delaying kidney failure and transplant are seen as more hopeful than dialysis which is often painted as the treatment to avoid. With home dialysis, people can have a fuller life so targeting the national kidney organizations iwth that message is important to get their media people to start promoting home dialysis as well as preventing kidney disease and transplant.

It seems like unless you can get a national organization to collaborate, starting local and hoping that the story is newsworthy enough to go national in a health update. I think national news (morning or evening) on ABC, NBC, CBS or FOX get some of their stories from local stations. You could try to get CNN or Discovery Health to do something on dialysis, but that wouldn’t reach the millions of people that don’t get cable TV. Incidentally, Discovery Health does have articles on dialysis:

The real deal about mentions of other health diseases like Diabetes in mainstream health television is Preventive Care…the whole point is NOT to lose your kidneys!

Once you lose your kidneys that’s it and it just gives the bad impression that living with dialysis is such a glory its NOT! We don’t want to give that message out…what we’re really doing here is coping and trying to adjust with this chronic disease…

However, people who are already doing home dialysis usually know where to go and find information and resources, all in our secret underground community… :wink:

I think with diabetes and heart disease, in addition to preventing it, the media also talk about managing the disease. Too many people already have those diseases to ignore them. I think the message that bobeleanor is interested in getting out there is that you can live with dialysis – and live better with home dialysis. I’d like people to know that with home dialysis, it’s possible to learn so much about your illness and treatment that you can do it yourself. You can travel (and in some cases take your HD or PD machine with you), enjoy friends and family, do activities you like, and even work full or part-time.

I don’t want people to paint a picture of dialysis that is not realistic. Although if you watch spots that talk about transplant, you would believe (and most people do) the unrealistic picture that transplant is a cure for kidney failure and people who have transplants never have problems again.

Hi Folks

What is the meaning of this page?

What I was getting at was to have a image that when everybody saw it knew right away dialysis. And That dialysis isn’t the end of the world. But to hear and read some the “stats” that kidney groups put out "is once on dialysis the avg life is five years. " Not very help full.

If this page is about helping new people deal with home dialysis then go no farther. You’ve done it.

bobeleanor :wink:

Bobeleanor, the purpose of Home Dialysis Central is just as we say on the home page: “to raise awareness and use of PD and home hemo.” We believe these treatment options are vastly better than in-center hemo for making people feel better 7 days a week (instead of having just 1-4 “good days” each week), stay active and productive, and live longer. We don’t have an image (photo) of dialysis, because dialysis itself isn’t the point. The point is living.