Kidney School

When is the long-term effects of kidney disease module coming?

Hi Jane,

Thanks for alerting me to that other post, by the way; I deleted it. Anyone who wants to do research must clear it with us before they post a message.

The Long-term Complications module is coming…soon. Sorry I can’t be more specific. It’s been written and sent out for review to the multidisciplinary Life Options Council. We’ve received their changes back, but I haven’t yet gotten the copy with the suggested changes to see them, and then it needs to go into layout (for the pdf version) and be programmed (for the on-line version). So, it’s still probably at least a few months off.

Was there something particular you wanted to know from it?

Glad to be of help. What topics will the new module cover?

It will cover:

Fluid removal - how it works, why more frequent/longer HD is better
– Avoiding damage to the heart (left ventricular hypertrophy)
– Statins and heart failure (why it’s important to take coenzyme Q10 with a statin)

Toxin removal - planning ahead to avoid long-term problems
– Small, middle, and large molecules
– Maintaining residual kidney function
– Renal osteodystrophy
– Blood vessel calcification
– Amyloidosis
– Neuropathy

The gist of it is something I’ve said here and on the dialysis_support listserve (and learned from my international dialysis expert gurus): In the short-term, how you feel on dialysis is all about the rate and amount of water removal. If not too much needs to be removed and/or it is done slowly and gently, you’ll feel well right after a treatment. In the long-term, how well you’ll be able to avoid long-term problems depends on removal of middle and large molecules. So, you can feel great after in-center HD–maybe even for a few years if the water removal is done well–but it can catch up to you in time if the toxin removal is not up to par. And “adequate” doesn’t cut it for toxin removal.

This is some of the most important info the patient population needs to hear. Wish I had been clearly educated on each topic when I started dialysis. Hopefully, this will open the door for more SDD and SND programs to be started.

Jane, I wish everyone was clearly educated about all of this before, during, and after staring dialysis, but that goal is sadly all too far off. There are at least 11 studies from countries all over the world–including the US–that have found that when folks are educated about all of their treatment options, 45-60% will choose a home treatment. In the US, fewer than 8% of dialyzors are home. So, what does that tell you about the education we do? And, of course, choosing a treatment is only the tiniest part of what folks need to know about how to live long and well with kidney disease…

hooray…bravo…could not agree more…education is the key… when Jessie had started dialysis back in Dec 2006 I asked the questions but was given so so answers…that was when I put my foot down and told the TEAM point blank… Do NOT tell me something we should know to-day…6 months down the road… ALL dialysis patients need to have all options open to them…not just what is avaliable at a certain clinic…but all options

This has really been a giant part of the challenge in the US–when only about 1 in 3 centers even offers PD, and only a tiny fraction (fewer than 10%) offer any form of home HD. The way dialysis works here, folks who have employer group health plans (EGHPs) are gold–most people on dialysis have Medicare, and the payment for dialysis has lost ground since Medicare started paying in 1973. But EGHPs will pay many times what Medicare will, and this is pretty much what’s keeping dialysis afloat. So, everyone wants the EGHP patients–enough that they will withhold information that might persuade working patients (or those whose spouse carries their EGHP health insurance) to go to another clinic and get a treatment that is a better fit for their lives.

Unless centers are compelled to tell patients about ALL of the options and where to get them, there are no “teeth” in any policy of treatment information.

What centers don’t realize is that they are figuratively killing the goose that laid the golden egg. If they would offer home treatments, more dialyzors would keep their jobs and health plans so they wouldn’t all have to fight for the 25% of folks who have an EGHP at any given moment. It would be better for dialyzors, better for dialysis providers, better for Medicare, and better for US taxpayers.

Move over, Jessie, I think I’m gonna move to Canada. >;-)

Dori, not completely true. Even though I had EGHP through my wife, I had to go to Medicare after the 30 month qualification period. After that EGHP became supplemental to Medicare. However, I do think EGHP does pay for the days Medicare doesn’t, but still at the composite rate.

I’ve lost track of the current budget that was supposed to be passed. but remember Bush wanted to extend the qualification period out to I believe 5 years. That certainly would put more money into the centers.

Hi Rich,

You’re right that right now the MSP (Medicare Secondary Payer) requirement where EGHPs pay first and Medicare is secondary is 30 months, and various groups are trying to extend it to 42, 48, or even 60 months. Not surprisingly, the insurance lobby has finally caught on and is vigorously opposing this, claiming (correctly, actually), that Medicare is cost-shifting onto private industry. I suspect that getting an extension this time will be much harder than it was in the past. This is probably good, because Beth is aware of some research suggesting that each time MSP is extended, more kidney patients and their spouses who carry their EGHP coverage lose their jobs…

Dori and Beth congradulation to both of you and the many other proffessionals who contributed to Match -D… a jod well done … the people who helped out are the who’ s who of the dialysis community … I was happy to see that Dr. John Agar and Dr Christopher Blagg had an input these are some of the big boy’s… Well done

[QUOTE=Dori Schatell;14743]It will cover:

Fluid removal - how it works, why more frequent/longer HD is better
– Avoiding damage to the heart (left ventricular hypertrophy)
– Statins and heart failure (why it’s important to take coenzyme Q10 with a statin)

Toxin removal - planning ahead to avoid long-term problems
– Small, middle, and large molecules
– Maintaining residual kidney function
– Renal osteodystrophy
– Blood vessel calcification
– Amyloidosis
– Neuropathy

The gist of it is something I’ve said here and on the dialysis_support listserve (and learned from my international dialysis expert gurus): In the short-term, how you feel on dialysis is all about the rate and amount of water removal. If not too much needs to be removed and/or it is done slowly and gently, you’ll feel well right after a treatment. In the long-term, how well you’ll be able to avoid long-term problems depends on removal of middle and large molecules. So, you can feel great after in-center HD–maybe even for a few years if the water removal is done well–but it can catch up to you in time if the toxin removal is not up to par. And “adequate” doesn’t cut it for toxin removal.[/QUOTE]

Dear Dori

Though I dont want to tread on any of my US colleagues toes … and there are many there more qualified then I am to answer these sorts of questions … I would be happy, if you wished, to try to cover these topics, one by one, maybe one a week, in as simple, anglo-saxon language as I can … but again, you may be doing this already (and better) in your Kidney School (though I am not sure what this is or how it works).

Let me know if there is a demand for some easy explanations and if you want me to have a shot at it for your readers - but again, I dont want to (a) reinvent the wheel (b) step on US toes © wade in where I am not wanted or (d) upset your readership with the suggestion.

It just seems there might be some value in it … and, it is along the lines of the emails you, Chris Blagg and I have shared over the last 2-3 days about patient education and may lay the ground work for the reference source ‘we three’ have been talking about ‘hatching’.

Cheers

John Agar
http://www.nocturnaldialysis.org

Hi John,

Cool idea! Kidney School, by the way, if you haven’t seen it (you haven’t seen it?!!) is at http://www.kidneyschool.org. It’s 16 interactive modules which take about 30 minutes to go through live, or they can be downloaded as pdfs. The last module, which is not quite done yet, covers some of the above info.

Would you be interested in writing up some of this stuff for our Topic of the Month articles? We need a new one each month, and they’re easy to read. You can see the ones we’ve done already at: http://www.homedialysis.org/resources/reading/.

[QUOTE=Dori Schatell;14760]Hi John,

Cool idea! Kidney School, by the way, if you haven’t seen it (you haven’t seen it?!!) is at http://www.kidneyschool.org. It’s 16 interactive modules which take about 30 minutes to go through live, or they can be downloaded as pdfs. The last module, which is not quite done yet, covers some of the above info.

Would you be interested in writing up some of this stuff for our Topic of the Month articles? We need a new one each month, and they’re easy to read. You can see the ones we’ve done already at: http://www.homedialysis.org/resources/reading/.[/QUOTE]

Dori … I’d be honoured to try to fulfill this.

Let me look at the links you have given me and get back after the weekend.

John

As an aside though, I will need to be cautious about specifics relating to treatment issues such as your funding arrangements and such … ours are so different here. Outside that area, it’d be cool to have a shot at it.

John

Prof. Agar is stepping up to the plate to educate? My life as a dialysis patient just got better!!! THANK YOU for deciding to support patients in this way! I hope this starts a landslide of other dialysis professionals following suit…it’s about time…let the education begin : )

Financial issues aren’t what you need to focus on, John. :slight_smile: