Visit to the Aksys Corporate Headquarters

Hi y’all,

I haven’t figured out how to do quotes yet in this board, but Bill was wondering what the breakdown of patients was in New Zealand between HHD and PD. Not keeping this info in my head, I emailed Chris Blagg, MD, and this is what he said:

"As of 2002 in NZ there were 40% of patients on CAPD and 8% on APD, and 14% on home hemodialysis. Also, among hemodialysis patients only 3% dialyzed for less than 4 hours. Median weekly treatment was 13 hours. In Australian data there is better survival with URR over 70 and a clear better survival the more hours of dialysis per week. There is no significant daily dialysis in either NZ or Zustralia yet so these figures apply to 3 times weekly dialysis. Also 64% of NZ patients have an AV fistula,

I was down there three weeks ago and the enthusiasm for care in the home is great - perhaps because of geography, perhaps because dialysis is run out of university programs and large hospitals and perhaps because commercial dialysis hasn’t com there yet."

Hope this helps.

Also, re: Awareness of HHD–awareness of ANY modality besides in-center hemo has been low as long as I’ve been working in this field–15 years. We did a pilot test of the Life Options booklet “New Life, New Hope” (you can download this for free from the Life Options website, btw–lifeoptions.org), and the most startling finding was that people loved the glossary–because it included info they’d never heard of, like PD! Unfortunately, this is still true today. Most patients never know that there are differences in quality between nephrologists and clinics, that they have a choice in where they go for care (insurance permitting…) and that they MUST be involved partners in their care if they want to have a good life.

Dori I think you will have to break down and become a registered user if you want use the quote feature - you’ll also be able to bold information. (’:lol:’) and use emoticons

I agree with you Gus - Internet access at the dialysis chair opens a world of information to people. Here is a link to information about the Northwest Kidney Centers’ (NKC) internet program:

http://www.nwkidney.org/morenews/internet.html
and here is an online version of the article the CEO of NKC wrote for the May 2004 Nephrology News and Issues
http://www.nwkidney.org/images/website/docs/InternetArticleNNI.pdf

as far as cross contamination it is recommended that a user wipe down the computer before use with a bleach soaked towel. Of course bringing your own laptop is the best solution – something many people are doing these days.

I dialyzed in Auckland, New Zealand in 1999. The unit I visited had a unique system of self care. Each patient was rated based on the staffing ratio they required. So there were 6 to 1 patients -meaning they needed very little help dialyzing, they would set-up and tear down the machine, cannulate, fill out paper work etc. – and at the other end of the continuum there were 3 to 1 patients – meaning they were the close the eyes/stick out the arm type of patient that required full staff support.

Perhaps this sort of incenter self care provides a gradual path to home dialysis – people realize in the comfort of a unit that they are able to do their own treatment so why not do it at home. I can imagine a person starting dialysis requiring a 3 to 1 staffing ratio, and then gradually learning the ins and outs of treatment so that they over time they could move along the continuum to needing a 6 to 1 staffing ratio and then, if their living situation is appropriate, they could move to home hemo. This sort of continuum of care makes a lot of sense to me and fits with my view of dialysis - that dialysis is a journey.

I would not have been a good home patient when I started dialysis but over the years I grew in my ability to handle my own treatments. It is this experience that makes me think all patients should periodically evaluate their treatment options. It isn’t that each year the treatment options change (though they might as new machines/technology come along) but the individual changes over time.

Bill, I just want you to know I have a lot of respect for you and your posts and am totally envious of all your travels and experiences. I am so glad you share them with us.

Yes Bill, I think the idea of selfcare is an excellent one. When I worked as CNA in Nursing home we had a similar patient “lottery”. When our assignments were written out for the evening the pts. were assigned marks for level of care, and no one could receive an assignment with all “total care” pts… or selfcare pts…
The problem I had (when I mentioned this method) was that the nurses didn’t want to run the risk because ultimately it was their license/responsibility on the line. But then again (as I said) they allow techs to work under their license.
I would love to see this thing fly, and would be happy to participate if something like this were instituted in the unit where I am. Although I’ve mentioned it to staff, I’m taking the next step and asking my neph. (head of unit) if I can be allowed to take over some of my care. The last tech. I had wouldn’t even let me tape my sites, but now at least I’m allowed to do that. I have to added blood to arterial chamber and turned off the uf, but staff wasn’t too thrilled about that. Gosh, I’m not really a leader, but a girl’s gotta do, what a girls gotta do. You have such wonderfull ideas, and I second Marty’s envy about your travels. I’m not a traveler, but I love reading about yours. I’m not really a reader either, but your travels are like books, and I find I’m always waiting for the next volumn to come out. Lin.

These days I bring my own needles when I travel since I use the buttonhole technique but I also bring everything else I need to put myself on and take myself off. So far I have always been allowed to practice selfcare forcing staff to stand by and fidget while I put 'em in and tape 'em up (with tape I brought from home). I really like this because once the needles are in - the exact way I like it - the treatment should be uneventfull. Self-care during travel another benifit of home dialysis.

Marty and Lin thanks for the travel story props. When I travel I like to do the things I don’t have time for at home - like reading and writing for fun. But I also know that people who share my comorbidity - wanderlust - get diagnosed with kidney failure everyday. And to them I say - It’s very do-able. Whatever you’re thinking if you have the will to go, there’s a way.

Bill, I just wanted to say that I think the center you’re at should become a model for all others! It’s super to read about a center that trully puts pt.s first, and allows them the choices we’re supposed to have. I trully believe centers can please themselves (make profits and pay staff) plus take care of the pts. and their needs and wants. It surely sounds like the center you’re at does that. Please tell them word gets around so they know other pts. are envious of what you have! Lin. (PLEASE open a center in NW NJ!) :slight_smile:

I’ve been thinking about this and your billboard idea Marty. What about live web-casts?

I think it would be useful if homedialysis.org sponsored monthly web events. Marty I imagine you, and your Dad, would be terrific subjects. I think that homedialysis.org might be able to drum up computer savvy volunteers to “film” the on, the first hour or so and even the off, which would be broadcast live. The great thing would be if you and/or your Dad would answer either live questions or posts to a thread in real time. One of the volunteers could sort and ask the questions and then type your answers. And experts - from the machine manufacturer, nephrologists, CMS, etc. could participate remotely (you wouldn’t have to have a house full of people - just two or three).

I’d do it. What about you others currently at home? I think it could be a great way to raise awareness home dialysis and answer questions. And it could be done for each audience represented by homedialysis.org’s four main boards.

Hi y’all!

Monthly webcasts – cool idea! We’ll check into that, and maybe it’s something we could do starting next year if we can get continued corporate support for this site.

Definitely tell any of our sponsors that you run into that this site is valuable, and tell all your friends, so we can drive traffic and prove value. : )

Bill, I’m game. I don’t think we’ll ever get home hemo back without a push.
I wonder if my tape from our TV expo could be used? I am pretty sure they did alot of the on and did some interviewing.

Lin, the Northwest Kidney Centers WAS the model for all other centers, it is just that when NKC was copied some of the details were left out. It is too bad that the NKC model was not copied more closely but clearly: today NKC is an anachronism. NKC is a throwback to an earlier time, a time of non-profit providers; a time when providers were a link between dialysis consumers and their neighbors. Because of the support of my community, my neighbors, NKC can mange their operations to meet their mission, a mission to “promote the optimal health, quality of life and independence of people with kidney disease, through patient care, education, and research.”, rather than manage their operations to meet Medicare minimums. Without community support a dialysis provider can only go as far as the three day a week Medicare composite rate takes them.

Over the eight years that I have been posting to the internet I have often written about NKC and what makes them special - Lin I know you have heard me talk about NKC before I apologize for repeating myself but I haven’t written about them before on this board and people new to the internet will see this for the first time. For the 99.5% of dialysis consumers outside of NKC’s service area I know it must be frustrating to know places like NKC are out their while your dialysis options are limited. I know that if I happened to live somewhere else and had a different provider I would not be doing as well. Lin I am glad you like to hear about other centers, I see no use in keeping my experience a secrete. I think it helps to know how it can work well. Knowing what is possible is what moves the ball; what helps to improve everyone’s care. I also think knowing that a provider like NKC still faces fundamental challenges - challenges that are inherent in both ESRD the disease and ESRD the entitlement - helps one to understand the fundamental challenges faced by all people on dialysis and all of their providers.

Here’s what I think makes NKC a top-notch dialysis provider:

Consumer Care
Choice: Docs are not tied to any particular center so you can change treatment modalities or units without changing docs. And the other side of this is that you can change docs and not change units or modality. Your choice of which doc to use is only limited on the insurance side not on NKC’s side. NKC offers home hemodialysis either three days a week with a stipend for the helper or daily home dialysis without a helper stipend. NKC units are open late (until 11pm) so they can dialyze in the evening people that work during the day. NKC units run either Sunday or Saturday – most people have a choice of which weekend day to dialyze. NKC has a Special Care unit if one needs to run in a bed.
Staff:. Low employee turnover, with a large group of veteran staff. I assume they are the most experienced and competent staff in the world. Dietitian, Social worker and financial councilor are part of the treatment team.

Consumer Service
Amenities: All NKC units have individual TVs w/cable, ice machine, microwave, internet access at each chair, laptop(s) available for patient use during treatment, radiant heat panels above each chair, call lights and privacy curtains. NKC Foundation provides emergency grants to consumers in a tight spot. All NKC consumers can join their local YMCA and have enrollment fees waived and monthly fees based on ability to pay – as already determined by NKC, no second means test to work through. Transient dialysis coordinator available to help plan travel.

Consumer Education
Consumers begin treatment in an education unit, staffed by specially trained nurses; all aspects of treatment are gone over. NKC offers pre-dialysis education through their KEY program. NKC holds a patient conference each year that covers a variety of topics and they publish a bimonthly newsletter that is sent to each consumer. Support groups for consumers and for caregivers are available twice a month. NKC Foundation provides scholarships to consumers who want to go back to school. In unit self care is supported. NKC Policy and Procedure manuals state that consumer self cannulation is preferred. Volunteers are available to teach computer skills during treatment, using in unit laptops or ones brought from home.

Governance
In my opinion consumer involvement in the organization’s administration and governance is what sets NKC apart and why NKC operations are consumer focused. NKC involves patients at every level. There is at least one patient on every standing committee (except the Medical committee) and currently two Board committees are Chaired by patients. By including at least one patient on every committee, NKC keeps it’s focus on the consumer.

How does all this impact home hemodialysis consumers?

For one thing it is much easier for me to backup. If I need to run in center I have access to 12 different units (within 30 miles of my house). Since all NKC units are open 6am to 11pm I often have a wide range of times to choose from and since NKC units run on either Sat or Sun my options extend through the weekend. Another advantage people in NKC’s home program have is the long experience of the home dialysis staff. I also think the expectations of the Seattle Nephrology community are higher because so many home patients have come before us and have done so well. But the biggest impact of NKC’s patient –centeredness is on the modality choices that NKC dialysis consumers have. We can choose from:

  • the Aksys PHD – my choice – and dialyze more often then the three times a week reimbursed by Medicare.
  • the B Braun and dialyze more often then the three times a week reimbursed by Medicare – which I did for a year – but you need a helper for this option. I had to compensate my helper out of my own pocket (I traded rent in a mother-in-law apartment). Allows nocturnal runs.
  • and an NKC patient has the option to do conventional three day a week home dialysis on the B Braun. You need a helper for this option but NKC will provide a $40 stipend to the helper (even a spouse) per treatment. Allows nocturnal runs.
  • and NKC patients can also choose PD but I have no personal knowledge of the PD options.

However, even with all of that - dialysis remains inconvenient and time consuming in Seattle, just as it is throughout the world. It is still about finding the right fit for the individual based on the options available. A person’s size, attitude and other health problems all impact how well dialysis will work and how well a person adapts to dialysis. A provider can make dealing with dialysis more or less hard, but no matter what it is still hard. No matter how good ones options or provider, it will still come down to attitude and luck but that is true of life in general.