CKD Stage 3 and 4 Education

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

I thought this deserved a new thread. I’ve been thinking about this lately. I too participate in local efforts – out here it is the KEEP classes through the University of Washington and KISS through the Northwest Kidney Centers. Here is one thing I’ve been thinking – maybe I’m the wrong person to be speaking to the class.

The sense I get is that dialysis is seen as a failure – what I do – dialyze to replace my kidney function – is what they (people with CKD 3 & 4) are trying to avoid. Maybe the classes need to focus on staying in Stage 3 & 4 – promote the classes in a very hopeful way – have people who have been in stage 3 or 4 for a long time speak about their experience. Then that person could say “Oh by the way while I am being successful maintaining my kidney function I am learning about my dialysis options and realizing that it is something I can do and continue to live my life…etc.” In other words I think I am the wrong person to give the message I think they want to hear from uninators who are stable in CKD stage 3 or 4.

I think the programs need to be marketed as providing hope and then just slip in the CKD 5 education.

2

Thanks for starting the thread, Bill. When I talk with people who call to register for classes, I tell them that our goal is to help people keep their kidney function as long as possible, but to also tell them their options if their kidneys fail. We have an Intro to Kidney Disease class where we discuss ways to protect kidneys. We haven’t had a patient presenter for that class, but maybe that would be a good idea. You’re right – hope is key.

I’ve thought that it would be best to have at least 2 sets of classes. There should be early classes for people identified through KEEP or through their doctors who are at Stage 2 or 3. These people probably have a greater chance of preventing kidney failure by actions that could learn to take to avoid things that harm kidneys (dyes, drugs, etc.), how to do a better job of managing other illnesses that often lead to kidney failure (diabetes and hypertension), and healthy lifestyle choices that could improve everyone’s health (losing weight if overweight, exercising more, learning stress management techniques, etc.)

Once someone is at Stage 4 (15-30% of normal kidney function), the chances are that his/her kidneys will fail. It’s just a matter of when. I’ve known people who kept their damaged kidneys functioning for months or even years. But they learned what they needed to do to protect their kidneys and took an active role in managing their illness. I strongly believe more people need to have these tools.

3

Did you know there is going to be a World Kidney Day? World Kidney Day will be launched officially on Thursday March 9, 2006 and fully inaugurated on Thursday March 10, 2007:
http://www.ifkf.net/worldkidneyday.php

This could be something we could all use to build awareness of kidney disease. One of the easier things to lobby for is to get a state legislature or municipal government to issue a proclamation. So a three step strategy could be to:
One – Ask for a proclamation from State and local governments declaring support of World Kidney Day.
Two – Contact local media to do a story about World Kidney Day with the proclamation as the local “hook”
Three – Promote kidney health knowledge and education as the best way to maintain kidney health.

Rather than talk in the negative: “How to prevent Kidney Failure…” spin it in a positive way: “How to maintain Kidney Health.” I would suggest that we pitch the idea that everyone should “Know their kidney number. Know your GFR.” I was down in Olympia (my state capitol) last week with a group from the Northwest Kidney Centers. One of things we were lobbying for is HB 2792 (SB6677) An act requiring the calculation of the glomerular filtration rate (GFR) when the blood test serum creatinine is drawn.

Our message to the legislature was that the GFR is a much more accurate measure of how well the kidneys are performing than simply a serum creatinine result. It is a mathematical calculation using serum creatinine and factoring in the patients age, sex, and race. By requiring the reporting of GFR when the serum creatinine is drawn we would raise the bar of early detection. I believe that reporting the GFR will help in the education of healthcare professionals (primary care docs) and early detection means early intervention. Early intervention can delay or slow the progression of CKD, which is our goal: Maintain Kidney Health. Know Your Number.

4

I am in the process of executing a strategy to raise CKD awareness in Washington State and to get the one holdout Washington State Representative to sign on to HR 1298. The hold out is Spokane Congresswoman Cathy McMorris - which is a tough ‘get’ because her district is on the other side of the State (a five hour drive), and with out constituent pressure it is hard to get the attention of a member of Congress. Anyone here from the Spokane area?

My strategy is to get various municipalities, counties and the State to officially proclaim support for World Kidney Day on March 9th. I am focusing on Congresswoman McMorris’s district but I would like to get proclamations from across the state. I’ve heard back from King County and the Cities of Port Angeles, Walla Walla, Pullman, and Vancouver who have said they will proclaim support. Not bad for a bunch of emails and phone calls. I am waiting to hear from the State, the cities of Yakima, Spokane and Seattle, and the Counties of Spokane, Garfield and Pend Oreille.

Then I will work to place editorials in the various newspapers around the State – big and small. This has mostly been done while at work, on breaks and after hours, sending emails using a lot of cut and pasting.

I’m pasting below the draft Proclamation that I am sending along with my request (this is the one I sent to Spokane County). In my emails I also attach two documents that if any one would like please email me privately and I’ll send them to you. I am also happy to share my email that I have been sending to web site contacts, just let me know. It would take about 15 – 30 minutes to get a proclamation in your City – just email me if you’d like to give it a try.

                                   PROCLAMATION for World Kidney Day
                                                        March 9, 2006

WHEREAS, Chronic kidney disease is a major public health problem, of epidemic proportions, with increasing incidence and prevalence, poor outcomes, and high costs.

WHEREAS, According to the Northwest Kidney Centers Foundation, more than 20 million Americans-one in nine adults-have chronic kidney disease.

WHEREAS, More than 20 million more are at increased risk for developing kidney disease, and most do not even know it.

WHEREAS, High-risk groups include those with diabetes, hypertension and family history of kidney disease.

WHEREAS, African Americans, Hispanics, Pacific Islanders, Native Americans and seniors are at increased risk.

WHEREAS, Early detection can help prevent the progression of kidney disease to kidney failure. The earlier kidney disease is detected, the better the chance of (1) slowing or stopping its progression and (2) avoiding long hospital stays and dialysis.

WHEREAS, As the costs of health care continue to grow, early and accurate identification of kidney disease is a critical component of efforts to reduce the negative clinical and economic impact on individuals and on the state of Washington.

NOW, THEREFORE, BE IT RESOLVED, that Spokane County hereby proclaim that Thursday, March 9, 2006 as World Kidney Day.

5

Tomorrow is World Kidney Day. I was able to get the cities of Seattle, Spokane, Yakima, Pullman, Walla Walla, Vancouver and Port Angeles to declare support for World Kidney Day by issuing Proclamations. The Washington State Legislature proclaimed State wide support for World Kidney Day and King County (Seattle is in King County) said they would issue a proclamation in support of World Kidney Day.

You can read the actual Proclamations here http://nwkidney.org/home/worldkidneyday.html which is the Northwest Kidney Centers web site. Where I did not succeed was in getting newspaper interest in World Kidney Day – the only paper that was at all interested was the Spokesman-Review – maybe there will be an article tomorrow.

I still haven’t been able to get any feedback from Spokane Congresswoman McMorris (or her office via her health aide) about the Congresswoman’s interest in dialysis issues. Her office is the only Washington State political office that will not engage on kidney health or dialysis issues.

I haven’t given up but it is frustrating - anyone know someone in the Spokane Washington area?

6

oops. that was me.