Well my kitchen is usable again. The floor is down, walls painted, cabinets installed and full of dishes, counter installed. I still have a few projects to go - molding, trim and furniture - but I can say it looks much better and I have a real sense of accomplishment. All in all I would have rather traveled around Europe for two months but a new kitchen is probably about the same price and I’ll get to enjoy the fruit of my efforts for a long time to come.
The thing keeping me busy now and for the next few months, is the Northwest Kidney Centers Family Health & Kidney Expo that will be on October 29th up here in Seattle. I came up with the idea and I have been trying to pull it together since May. My idea is to have an Expo with booths, each booth will have a CKD educational element - a booth on fluid management, a booth on phosphorus, one on travel - and dialysis consumers can spend as little or as much time as they like at each booth. I’m hoping to have over 20 booths presenting educational topics staffed by NKC volunteers, 20 or so booths bought and staffed by non-profit renal related organizations and 20 or so booths bought and staffed by corporate renal related businesses. In addition to these 60 or so booths there will be a dozen or so un-staffed table top displays and a CKD screening area staffed by nurses. I think the Expo will have a strong home dialysis element. Details are still getting ironed out but I know every dialysis consumer who attends will know that they have the option to dialyze at home more frequently and that there are some very real benefits to getting dialysis more than three times a week.
The big Expo challenge will be to get dialysis consumers to turn out and to bring family members. My goal is to get 500 current dialysis consumers to attend, 100 kidney transplant recipients and 150 individuals pre-dialysis with CKD and if they each bring a family member we’ll have a total attendance of 1,500. I believe that by attending patients will gain knowledge that will help them to cope and ultimately thrive while on dialysis. Having family members attend will help those on dialysis by allowing family members to understand all that is involved with being on dialysis.
As you may know it is hard to get dialysis consumer to turn out for events so we’re trying a number of things to get an historic turnout. For one, attendance is underwritten - for every person who attends the Expo, donors will contribute to the not for profit Northwest Kidney Centers. So far a donation of $13 will be made; we’re hoping will get that up to $30. We’ve also talked about a bit of competition among the 12 NKC units – perhaps the unit with the highest percentage of patients in attendance will win a cool prize for every consumer or for the unit to enjoy. And if we meet the attendance goals every NKC staff member could receive something – a gift certificate, etc… We’ve also lined up local sport celebrities to attend - we’ve adopted a sport theme since the event is on the suite level of the local football stadium (American Football -Qwest Field where the Seattle Seahawks play). We’ll also produce a series of posters to promote the event, send out save the date cards and flyers, publicize the expo in the NKC newsletter and I am going to personally invite consumers at my two local units - other NKC patient leaders will be personally inviting consumers at other units. Our slogan is Knowledge is Power.
I go back and forth on whether this will work - lying in bed, trying to get to sleep I imagine no one showing up on the day of the Expo - I think if it does work, if patients do show up, it will be a great tool for patient empowerment. We’ll be able to build on this year’s efforts and have this as an annual event. What do you all think? What would get you to go to a Kidney Expo on a Saturday? Any ideas or thoughts?
I certainly admire your ambition. I would go to an expo if in the advertising there was mention of the newest dialysis machines such as Askys and NxStage. Wouldn’t it be nice if there was a Homedialysis Central booth.
Wouldn’t it be nice if there was a Homedialysis Central booth.
Ask and ye shall receive! I wouldn’t dream of missing this Expo, and will have the Medical Education Institute booth there, which covers Home Dialysis Central, Life Options, and Kidney School. We’ll have postcards from all three of these sites, and I’ll tell folks all about them–especially how terrific all of our message board folks are.
I can’t be there, but hey…be sure to have a wireless laptop there cuz certainly am sure visitors will wanna see a live demonstration of the websites…and of course some of us here will be online! 8)
If possible, take your digital camera and take some snapshots of the event for this site…
Hey Bill,
good on ya, Mate. you stay busy and the time will just flow by.
If I was a pre-dialysis ‘consumer’ I would want to see someone Dialyze themself… and enjoy it, themself and others and be able to talk about Dx and their expieriences. I’d want to know someone could do it and be in control of their own fate. I’d want to know that ‘all is not lost’ or ‘undo-able’ , that there is life after kidney failure as good as you want to make it.
I think the Expo will have a strong home dialysis component, Dori was one of the first exhibitors to sign up and I think all the machines offered by NKC will be on display. When I wake up in the morning the first thought I have is about the Expo and when I go to sleep it is the last thought - I worry that there will be a low turnout of people on dialysis - I really believe that if patients got in the habit of attending an educational event once a year outcomes would improve but I can’t say what exactly they would learn that would help them. I think it will be different for each individual but to me the key is getting people more engaged in their own care and spreading knowledge about this complicated disease. Educating patients and their families. I would like to personally invite each NKC patient but with over 1,000 people dialyzing through NKC, I’ll have to rely on posters and flyers to get out the word. Does anyone have any marketing advice?
Probably, the most easy way to get ahold of thousands of patients is by getting a list of all registered patients in your area, if not, a list of nationally registered patients doing dialysis…but heck, that would be costly trying to send out mailings nationally…
Or…just stop by your nearest local clinic and post a flyer on their bulletin board, or if you really wanna be sure they read it wait on the lobby exit door and hand the flyers directly to the patient and even speak a few words with them…
There might be other ways, but I guess these are the ones I know of…
One problem is that there is no national list of patients that you can buy. Privacy laws prevent that. Even data that you get from national sources has personal information stripped from it. So you need to figure out ways to approach those that do have names of patients or communications vehicles that patients get to put something in their publication or on their website about your meeting.
Perhaps you could send a brief newsletter article to the Forum of ESRD Networks (www.esrdnetworks.org) and ask them to disseminate it to all the other Networks for publication in their newsletters. You could send the same newsletter article to AAKP chapters (www.aakp.org) and NKF affiliates (www.kidney.org) in your area. I’m sure you’ve posted messages on the bulletin boards and mail lists. I’ll keep thinking…
Well it’s over - and in my view it was an unqualfied success. I don’t have the official count but I believe over 900 people attended of which over 200 were on dialysis. I think this means it was the largest gathering of dialysis consumers ever.
I’m having Dori - as well as some Northwest Kidney Centers folks - over at 7 but I wanted to share the news. My first optimistic post on this subject back in September asked for 1,500 attendees and I think the final count will be closer than anyone else thought it would turn out. I think this year was just a start (I’d love to hear from any vendors that attended).
More later. See what you can accomplish when you dialyze daily?!!
Cheers,
Bill
I will endevor to reengage with my online friends now that I have
finished this project.
I’m dying to see the final counts, but I wish you all could have seen the Expo! It went on, seemingly for miles, with tons of booths from commercial vendors (e.g., Aksys, BBraun, Fresenius, NxStage), plus a lot of non-profit booths, and a giant array of “lifestyle” booths with everything from cooking demos to home dialysis, to exercise. There were health screening booths for BMI, blood pressure, blood sugar, and protein in the urine. And there was a giant jumping castle for kids, free lunch for the first 100 attendees of the home dialysis panel at noon (they ran out of lunches!), great door prizes (iPods!), and I’m probably forgetting some things.
Most of all, there were people–all day long! Tons of people! There were people with transplants and kidney donors, people with CKD and people on all types of dialysis, family members, friends, volunteers…
It was such a hit that NKC is already planning to do it again next year, so you’ll have a whole year to plan to be there.
No, Renal Solutions wasn’t there this year, but I bet they’ll be there next year! I talked to a couple of people who wanted to think about home dialysis but lived in small apartments where they didn’t have storage for bags of fluid and coudn’t make plumbing changes, and suggested that they might want to check out the Allient Sorbent.
Homeowners have more choices of machine (depending on what’s offered by their clinics), because they often have more storage space and they can make plumbing and wiring changes. Apartment dwellers are getting a better chance for home hemo with the new machines!
I am glad this event went so well. I can only give praise to those who participated. I think this is one giant step forward into getting patients interested in their own care. The turn out being as large as it was shows that something is changing.
Temperature fluctuations and contamination would be important considerations if you were considering doing this. I’d ask the training nurse and/or machine/supply company what supplies could safely be stored in a garage, what temperature range supplies should be stored at, and how to store supplies so they wouldn’t get contaminated.
Aw come on now. Where there’s a will there’s a way, even in a small apartment. Unless the landlord doesn’t allow the two slight modifications needed, there’s no reason not to do hemodialysis in a small apartment. I store most of my boxes on one wall of the hallway that goes to the bedroom.
As for storing anywhere like a basement or garage, the only real considerations are the temperature requirements (not freezing, but not too hot either), because the bulky supplies come in sealed containers in sealed boxes anyway. They aren’t going to be contaminated from storage, unless there’s a flood. But it might be a little inconvenient to have those supplies far away from your machine. The ancillary medical supplies like needles, gauzes, syringes, tapes, etc. don’t take up much room. You can easily use a couple of large drawers in an existing armoire or something, or you could just put up a couple of small shelves on the wall near the machine. You could even buy a couple of those plastic storage boxes and slip them under the bed. As I said, the bulky stuff in cases can just be stacked up against a wall somewhere.
But don’t take my word for it. I’m sure your hemo hemodialysis nurse would be happy to advise.
The final count is in: 1,019 people attended the Expo, including 139 people who dialyze at or through the Northwest Kidney Centers. There were about twenty people there who dialyze through other providers. So over 150 people who use dialysis to replace their kidney function.
139 is about 12% of the total number of people who choose NKC for dialysis. I think that is a record, at least since I’ve been on, did it use to be different? Does anyone who’s been around remember more patient involvement in the past? Since I’ve been looking I haven’t seen wide spread engagement any where…with one exception - home patients. PD and home hemo and as a subgroup more frequent home hemo consumers are disportionately represented. When home was more wide spread was involvement also more wide spread?
Even online I’d say we (more frequent hemo consumers) are disportionately represented. Or is it just that I’m not looking at the right sites?
I have an update - after further review: The final count for NKC dialysis consumers who attended the Expo is 118. It turns out there were several people who identified themselves as being on dialysis but they have transplants. There were also some people with CKD (not on dialysis yet) in the original count of dialysis consumers. We also discovered that 2 people had registered twice.
So while the overall attendance was encouraging (it looks like a couple people registered twice - guess they were trying to win the iPods - so the attendance total is now thought to be 1,012 which includes about 150 Expo volunteers and exhibitors) I really wanted more people who are currently on dialysis. Trying to increase engagement by current dialysis consumers will be my goal for 2006.
Very impressive indeed! Sadly I wasn’t one of them but hey, just maybe if they hold something like that in SanFrancsico or close to my area chances for me being there are high…
