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Author Topic: Please sign a petition to support me and others on dialysis  (Read 25720 times)
Zach
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"Still crazy after all these years."

« Reply #50 on: March 15, 2009, 05:59:48 PM »

I don't think it's "cheating" - I think it's just a diet with fewer restrictions.  it's a lot easier to live with a renal diet that has room for the occasional glass of milk or handful of cherry tomatoes.  It's one of the benefits of EODD.  You can't go crazy, and eat a whole cheese pizza, but at least you can have slice once in a while.

Excellent point!

8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
cosmickelly
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From my 09/08/07 wedding

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« Reply #51 on: March 20, 2009, 04:04:35 PM »

Friends: You can help me by signing this petition. "Dialysis weekends" are extremely painful for me!! and this petition would eliminate them!! More dialysis equals kinder, gentler treatments. It would also (at least twice a month!!) allow for free Saturdays!! where I could go to events and other fun stuff!! So, please take a minute and a half out of your busy life to read and sign the petiton. Thanks!! Kelly :)

World Kidney Day is March 12
Please sign a petition to support me and others who manage their CKD with dialysis

March 12th is World Kidney Day! It's a good time to think about dialysis--and how sad it is that the U.S. lags so far behind the rest of the industrialized world. 20 million Americans have chronic kidney disease, and 20 million more are at risk. About 375,000 require dialysis--of which 92% do conventional hemodialysis : 3 treatments/week of 3-4 hours. This is not enough dialysis for most to live the lives they wish to live. We want Medicare and the Congressional Kidney Caucus to support better treatment. Won't you please sign our petition to show your support?

1. Please take a minute and go to http://www.petitiononline.com/eodD0903/petition.html
2. Please forward this message to everybody in your address book.
3. Please post this message to all of your social networking friends.
4. Please post this message to all of the internet forums and groups to which you belong.

Current Medicare reimbursement is routinely limited to 3 treatments per week, 156 treatments per year. This Medicare reimbursement policy forces people who are managing stage 5 chronic kidney disease with incenter hemodialysis to each week go two days without dialysis treatments. This is an anachronism. Hemodialysis is a routine emergency procedure; Medicare reimbursement should not force people who need regular dialysis to risk their health each week by going two days without dialysis.

We're asking that Congress pressure Medicare to change the number of treatments routinely reimbursed from 156 to 183 per year. This would remove the three day a week anachronism embedded in Medicare reimbursement and allow every other day dialysis. 183 payments a year would increase support to home dialysis programs currently providing health enhancing dialysis on a daily or near daily basis. A health treatment option Medicare currently under funds.

Please let me know if you have any questions or concerns. Thank you for your support.

Sincerely,

Kelly Harrington :)

[Used with permission from Bill Peckam]
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In-center Hemodialysis since 9/2004
ESRD, Diabetic Neuropathy, Peripheral Vascular Neuropathy
Dan.Larrabee
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Dialysis Dan

« Reply #52 on: March 20, 2009, 11:42:20 PM »

Done.
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AKA Dialysis Dan
Feeling the best I can because of Home Hemo
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Sharing it to help everyone feel they best they can
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Bill Peckham
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« Reply #53 on: March 21, 2009, 10:08:01 AM »

Thanks Kelly and Dan. I'm still trying to drum up signatures -  the organizations need lead time to officially support the effort so we're going to keep asking people to sign into April. We're up tp 1,530. In some ways that seems pretty good but really it would be good to double that and get at least into the low thousands.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #54 on: July 20, 2009, 05:20:12 PM »

I was looking at this post cos I'm thinking of starting a petition myself about an unrelated topic.  However, my question is this.  Does anyone know if petitions like this one should only be signed by residents of the US?  Is there any point people from other countries signing it anyway?  Or does every vote count even if it's from NZ or England?
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
Bill Peckham
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« Reply #55 on: July 21, 2009, 09:12:31 PM »

I'd say every vote counts the same in that they don't really count at all. At least if like this petition you're trying for public policy changes. The point of this was to get organizations talking about the issue. No one was talking about the issue. Having a petition gives people a chance to form an opinion.

I definitely saw it as a first step to get the idea out there. Now organizations like NKC and RSN and other patient and dialysis organizations have considered the idea and supported it. So it depends what you're doing but none of the names are verified.

I said people from Canada should sign it because now 100 or so Canadians know they are not the only ones who think the provision of dialysis needs to be rethought. If we can help others why not do it?
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #56 on: July 22, 2009, 12:13:02 AM »

Thanks Bill.  Good to know.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
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