I Hate Dialysis Message Board
Dialysis Discussion => Advocacy => Topic started by: Bill Peckham on March 11, 2009, 05:26:56 PM
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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.
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Bill, I just can't support this. I would rather medicare support lifetime medications for transplants. I would rather see congress pass a bill to support the selling kidneys. I know that these are controversial issues here, but Medicare keeps taking hits for dialysis and soon they will run out of money and the normal healthy person who has paid into the system their whole life will have nothing when they get old. I already feel guilty taking so much for medicare.
How about if Medicare looks into how much it REALLY costs to dialyze a person and just pay that and not worry about DaVita's stock prices.
Digging Medicare is not the answer. Let KT take about 10 million a year less and let people dialyze more.
:waving;
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This is an idea I had and have been working on with Rich Berkowitz and Dori Schatell. I think the idea that Medicare says you have to go two days without dialysis is indefensible. I am not saying that you have to dialyze every other day, I am saying that Medicare can not justify forcing you to take two days off. I also have it posted on my blog (http://www.billpeckham.com/from_the_sharp_end_of_the/2009/03/every-other-day-dialysis-petition.html) if you want to send people a link or please feel free to copy any part of these messages and make it your own. I don't know if the Congressional Kidney Caucus could force CMS to make this change administratively but I think it would be good to have an active kidney caucus and this is an issue where Medicare's position is very weak.
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Rerun the day after two days off is the deadliest day for people on dialysis - it is three times deadlier then the other six days of the week and people are far more likely to be hospitalized after two days without dialysis. By giving just 26 more treatments a year Medicare would need to spend about $3,000 which they could make up with just one less visit to the ER but we'll never know because if you spend more money on the part B side (out patient dialysis) of Medicare it doesn't matter how much it saves in Part A (hospitalization) because to Medicare those oare two completely separate wallets. It would save money and it would save lives.
MedPAC published report after report on how much it costs to dialyze people. The National Renal Administrators Association shared their report on the cost of dialysis. There has been Congressional testimony on the cost of providing a dialysis treatment. If you want the information it is there for you. It is a false choice to say you have to choose between lifetime transplant coverage and a dose of dialysis that is healthy. All of those individuals have the same disease - not that this is the choice but if you could would you really choose to kill some people with CKD5 to give others with the same disease additional years of transplant med coverage?
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Please sign a petition to support me and others who manage their CKD with dialysis
Signed.
Thanks, Bill.
8)
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Rerun, do the math. 375,000 on dialysis. 13,500 kidney transplants in a year. Even if they allow payment plans, what is the best we could hope for - quadruple the number of transplants? So we get 54,000 transplants in a year. That still leaves 321,000 people stuck on inadequate dialysis. I've just switched from home hemo back to in-center, and I've got to say - it sucks. Compared to home, I'm tired; I'm thirsty, and I've got no appetite. I'd love the option to add more dialysis if it meant I could feel better again.
I'm signing, Bill.
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i signed
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:thumbup; I did copy this post, and forwarded along to friends and family.
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Signed
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I signed. I thought I was the only one complaining about those 2 days off. I feel horrible even watching my fluid etc during the 2 days off.
Thanks Bill.
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My computer would not let me sign the petition and listed the site as "blocked."
Bill, thank you for all of your efforts in having the rights of dialysis patients recognized by our healthcare system. It is because of people like you I feel there is hope for us all suffering from ESRD
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Im leaving work but will sign it at home.
And im with sunny thx for ALL you do to promote and educate about people with ESRD or CKD.
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Signed!!!
Thank You, Bill!
Anne :thumbup;
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done
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I'm just saying it is not up to taxpayers to support more dialysis when I DO feel not everyone with a heartbeat should be treated. Sometimes you need to say "no" to treatment especially when they don't even know they are at dialysis and more treatments are not going to bring someone 94 back to a productive life.
Medicare has more people to take care of then just US.
First is was Medicare needs to add End Stage Renal Disease to there job description and pay for 3 times a week. Then it was Medicare needs to pay for transplants. Then it was Medicare needs to pay for 3 years of anti-rejection drugs and Now you want 5 times a week dialysis sessions. AND people want lifetime medications for transplant drugs. ALL paid for by our Medicare system. All while old people are choosing between food and heart medication.
Medicare has more to take care of then just US. Stop being so greedy. If you give a mouse a cookie.......
Lets find another way to pay for our disease. Medicare doesn't pay for cancer patients, or liver patients, or heart patients or MS patients unless they are over 65.
It is like you know where the feed trough is and are banging on it with your cups wanting MORE.
Maybe you could get 2 more dialysis treatments through you own Health Insurance? Maybe when health care is nationalized you will only get 2 a week and that is all.
Sometimes when you push the button too many times you get shut off altogether. Be careful what you ask for.
Again, I will not sign and I may write to Medicare about my thoughts......
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I signed.
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You are a bunch of sheep!
:Kit n Stik;
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I bleated
deborah
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Sometimes thinking about another way to do something initiates change. Having more dialysis might not necessarily mean a lot more cost, depending on if it's home or in-center.
Wouldn't it be great if they got paid based on how WELL the patient was doing??
If optimal clearance is achieved maybe some percentage of the dialysis population will feel good enough to work. Having thousands of crappy feeling patients on disability cannot be our only goal!
Rerun, I love you, and I think you're one of the smartest folks I know. But I don't think there's an easy answer here.
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I'm just giving my opinion based on what I've seen over the last 20+ years. I keep seeing people beating Medicare up wanting More and More from them and people don't realize they are going to go broke. There are lots of people bleeding Medicare not just us dialysis people.
I say beat down the door of your health care insurance.
The dialysis units are paid on their performance and when I was at DaVita the employees got a bonus if the KT/V was up on the average.
I just don't think you can get blood from a turnip -- Medicare being the Turnip.
Why do we always want MORE from Medicare? How about a bunch of letters to Medicare telling them "Thank You" for doing as much as they do.
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Don't call me a sheep, no need for name calling. Ill sign anything that I feel will help me to feel better and live longer.
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I'm just giving my opinion based on what I've seen over the last 20+ years. I keep seeing people beating Medicare up wanting More and More from them and people don't realize they are going to go broke. There are lots of people bleeding Medicare not just us dialysis people.
I say beat down the door of your health care insurance.
The dialysis units are paid on their performance and when I was at DaVita the employees got a bonus if the KT/V was up on the average.
I just don't think you can get blood from a turnip -- Medicare being the Turnip.
Why do we always want MORE from Medicare? How about a bunch of letters to Medicare telling them "Thank You" for doing as much as they do.
I am going to see the play tonight "Who Lives?" and it's mind boggling to think that if it weren't for dialysis machines and Medicare - 1000's of patients would have died.
Just think, if people felt better, could work and live longer on dialysis, maybe they could even pay IN a little to Medicare!
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I think that asking for worth while spending to improve the quality of life is fine. Look at the money that is flying to "pork projects" that do not benefit very many people. We are bailing out banks, home owners that are having a hard time and so many other things. Why not increase funding to help people lead a better life. What about people that can't beat the door of private health insurance because they don't have any. With the unemployment rate growing, more and more people are losing coverage. I am very grateful for what medicare does for people. I agree with the people that say it may help keep people off of disability.
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When the government gets a good look at what Medicare spends on dialysis patients in this country you bet we will be cut off at some point and will have to bang on our insurance doors.
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One of the reasons I support this is that Medicare will end up saving money, and cost me less as a taxpayer. The less dialysis, the mo0re complicattions, the more time in the hospital. Thats the real costs kicking in there.
I get what you're saying Kit kat, I just think you're doing the math wrong.
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The silent truth is that optimal dialysis saves both lives and money. If those of us with CKD are unable to agree on such a simple principle, no wonder those in charge hold back.
Please note that the last place mortality statistic in the US is an American issue not seen throughout the rest of the western type nations. They already get it, more is better for the pocketbook and for the patient. Sad to see such lack of unity among CKD patients. Just my opinion.
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The Health system you have in the US is just confusing to me. But I do worry about the patients without insurance.
My Dialysis is paid for by our Medicare system here in Australia, and I am very thankful for it. My prescriptions cost me around $32 per script per month. I also pay private Health Insurance out of my own pocket per month, to have my own choice of doctor. Some months it kills us to find the money.
I work and AM a tax payer and therefore contribute to my own costs. So I will do as much dialysis as I want! Luckily for me I am able to do PD. It makes sense to stay as healthy as possible.
The dialysis units are paid on their performance and when I was at DaVita the employees got a bonus if the KT/V was up on the average.
How are they achieving the higher numbers? Are the pump speeds increased? What damage is being done to the patients cardiovascular system in the process?
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The silent truth is that optimal dialysis saves both lives and money. If those of us with CKD are unable to agree on such a simple principle, no wonder those in charge hold back.
Amen :thumbup;
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The silent truth is that optimal dialysis saves both lives and money. If those of us with CKD are unable to agree on such a simple principle, no wonder those in charge hold back.
Please note that the last place mortality statistic in the US is an American issue not seen throughout the rest of the western type nations. They already get it, more is better for the pocketbook and for the patient. Sad to see such lack of unity among CKD patients. Just my opinion.
Welcome back Hemodoc!
8)
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Don't call me a sheep, no need for name calling. Ill sign anything that I feel will help me to feel better and live longer.
JP you KNOW I was not singling YOU out as a sheep. Yes, you will sign anything you want. I just want people to THINK about it.
:cuddle;
QUESTION: People right now in the U.S. are doing dialysis 5 days a week. Who is paying for that? I do 24 hours a week and Medicare pays for that plus I have a secondary insurance. Private insurance was not a requirement to go on Nocturnal. What is the problem? Medicare is paying for it already.
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i think that we are very lucky in the UK, as we have NHS ALL treatment is free / doctors /dentists etc. so all my supplies and baxter cycler and aftercare is not even thought of in
terms of money, however if it was it would be a very different story, recently the goverment extradited a lady who was living here illegally and was on dialysis back to i think India and
obviously died becuase she could not afford the healthcare - i thought that was a travesty and should have been lenient with her, but as you can guess as europe is now classed a " one "
country there are no limits for people to live here from poland etc.. which will in the long term take a heavy toll on the NHS.
by the way the NHS is paid by contributions direct from your salary by working people but applies for everyone even on benefits,.
what is medicare ???
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The problem is that it is not available everywhere, not the payment of it. Thank the Lord you have access to optimal dialysis. Most don't in this nation.
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Medicare is a NATIONAL health care system for those over 65, those with some disabilities (like black lung) and those with End Stage Renal Disease.
Again, A National Health Care.... it is not state to state. They have Nocturnal in California and Washington State; I know this for a fact.
I guess I don't fully understand. ???
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Quite simply really, if you live in a zip code that does not offer these services you don't get them. That is the problem, sporadic availability. Actually, we don't have a national health care policy when it comes to dialysis, it is unit to unit, way worse than just state to state. Morein was able to obtain 5 days a week dialysis one week after asking for it. I am now two years into my quest and at least one or two months away from being able to get that. Rerun, you are quite fortunate to live in a zip code that you have access to this modality. Not everyone is as fortunate as you to have the access, especially a doc waiting for two years.
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Thanks Bill, for sharing this petition with us. You fight so hard for renal patients and I appreciate all your work. I signed. :thumbup; It only makes sense to beable to have treatments every other day without the two day gap. If we want to get upset about Medicare payments to people, let's get upset with those who are scamming the government and are receiving Medicare disablitly benefits when they aren't disabled but they had a good lawyer. Dialysis patients deserve more than just minimal treatments to stay alive. Better treatments = better quality of life and a more productive person. I am fine with our care in the US. The other countries really don't have "free" care; they pay taxes on every dollar spent. If our government raised our sales tax to 17%, we would all scream bloody murder. We want low taxes and free care----hmmmmm, were is the money going to come from?
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okarol, how was the play? :waving;
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Quite simply really, if you live in a zip code that does not offer these services you don't get them. That is the problem, sporadic availability. Actually, we don't have a national health care policy when it comes to dialysis, it is unit to unit, way worse than just state to state. Morein was able to obtain 5 days a week dialysis one week after asking for it. I am now two years into my quest and at least one or two months away from being able to get that. Rerun, you are quite fortunate to live in a zip code that you have access to this modality. Not everyone is as fortunate as you to have the access, especially a doc waiting for two years.
Who is Morein and where does she live? If you are talking about Monrein? She lives in Canada.
I guess I am lucky. I didn't think Spokane, Washington was a real leader in dialysis, but maybe it is.
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I guess I am lucky. I didn't think Spokane, Washington was a real leader in dialysis, but maybe it is.
It's certainly better than where I'm at. I've got a choice of two centers, both run by the same hospital. They don't offer nocturnal, and I had to fight like crazy to get them to offer home hemo. The nurse in charge of NxStage now has a steady stream of patients signing on to the NxStage program, so at least I know I had a part in improving their care, even if I don't get to take advantage of it anymore. A lot of rural areas simply don't offer any choices.
To me, it doesn't make any more sense to pay for only barely adequate treatment. Would you want chemo that only cured most of the cancer? Would it make sense to only pay for enough insulin to keep your sugar at 200, instead of the 100 it is supposed to be? Why not give us enough treatment as a standard of care to keep us as healthy as possible?
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I guess I am lucky. I didn't think Spokane, Washington was a real leader in dialysis, but maybe it is.
:-*
I go to one of the best hemodialysis centers in New York City, which is affiliated with one of the top hospitals in the country, and even they do not offer in-center nocturnal hemodialysis!
I may have to apply for a teaching job at Gonzaga U to get the option I need.
8)
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Go Zags!!! :-*
The other night shift has 5 openings. Of course you would have Video (not a movie).
Ok you guys.... answer or think about this. Dialysis is 50 years old. Why are they just now saying more dialysis is good. When I started in 1987 I was on 4 hours and the big thing was "HIGH FLUX" dialyzors and that would cut your time by an hour. It was the rage!
Look.... it has to do with dialysis centers getting more money. More time.... more money.
I just think this smells fishy. And if something smells fishy there is usually fish! :stressed;
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I'm not a scientist, rerun - but I do know how I felt when I got more dialysis. I slept better, had more energy, had more appetite, wasn't queasy all the time, and didn't have this crappy taste in my mouth. That doesn't have anything to do with money.
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It seems like there was an article that Karol posted about some doctors trying to say that longer dialysis was not "cost effective" so that is where I got that thought.
I feel lots better on nocturnal, and if you do the math 24 hours per week of cleaning beats 9. I just have a problem knocking on Medicare's door. (again)
Go ahead and sign this petition. I just think you are asking for trouble by wanting more and more. Pretty soon they will take a good look at dialysis and starting taking things away. Especially when there are already articles out there saying longer dialysis is not cost effective.
Just some things to think about. :waving;
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Go Zags!!! :-*
The other night shift has 5 openings. Of course you would have Video (not a movie).
Ok you guys.... answer or think about this. Dialysis is 50 years old. Why are they just now saying more dialysis is good. When I started in 1987 I was on 4 hours and the big thing was "HIGH FLUX" dialyzors and that would cut your time by an hour. It was the rage!
Look.... it has to do with dialysis centers getting more money. More time.... more money.
I just think this smells fishy. And if something smells fishy there is usually fish! :stressed;
During the 60s dialysis was eight hours, 3x a week. Just what you're doing now.
okarol, how was the play? :waving;
I have a review up - with an original Okarol picture of me and Meinuk and my mama
Meinuk should have a review up tomorrow.
http://www.billpeckham.com/from_the_sharp_end_of_the/2009/03/who-lives-gets-the-job-done-.html
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okarol, how was the play? :waving;
Here's more http://ihatedialysis.com/forum/index.php?topic=12869.0
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Rich Berkowitz has a great post (http://www.billpeckham.com/from_the_sharp_end_of_the/2009/03/the-petition-lives-make-it-viral.htm) up on my blog to continue the conversation about Every Other Day Dialysis and continuing the campaign by simply signing the petition and asking others to do the same. It's going great - over 1,000 signatures. I think 10,000 is possible and it would be hugely helpful.
I recommend sharing this post comment by Dori Schatell (http://www.billpeckham.com/from_the_sharp_end_of_the/2009/03/the-petition-lives-make-it-viral.html?cid=6a00e54fc659eb8834011168f5bfbc970c#comment-6a00e54fc659eb8834011168f5bfbc970c) with your friends and email correspondents. Dori is great. She is the Executive Director of the nonprofit Medical Education Institute which runs Life Options, Home Dialysis Central and Kidney School. She is truly one of the good ones.
Here is here comment (http://www.billpeckham.com/from_the_sharp_end_of_the/2009/03/the-petition-lives-make-it-viral.html?cid=6a00e54fc659eb8834011168f5bfbc970c#comment-6a00e54fc659eb8834011168f5bfbc970c) in its entirety
Great post, Rich. I absolutely agree that EODD should become the new floor for hemodialysis. There are absolutely ZERO data to support a 3x/week schedule--and tons of accumulating evidence demonstrating how unphysiologic this historical-accident of a schedule is.
Next week, I'm meeting with my Congresswoman's health staffer, so spent most of Friday pulling together slides. One paper I found was by AJ Bleyer (Bleyer AJ et al, Kidney Int 1999;55(4):1553-9). In 1999, Bleyer was the first to do the analysis finding that the risk of death after the 2-day dialysis "weekend" was 50% HIGHER THAN ANY OTHER DAY OF THE WEEK.
In 2006, Bleyer and his associates did another analysis (Bleyer AJ et al, Kidney Int 2006; 69(12):2268-73). This time, they looked at the number of hours since the last dialysis treatment and the risk of a sudden death from cardiac causes. In the 12 hours right after the treatment ended, the risk of death was 70% higher. (Not too surprising--it's very hard on heart to suck off 45 hours worth of toxins and water in 3 hours). IN THE 12 HOURS BEFORE THE NEXT TREATMENT, THE DEATH RATE WAS TRIPLE.
This is what Dr. Carl Kjellstrand--who recently delivered a keynote address on this topic at the Annual Dialysis Conference in Houston--calls the "2-day killer gap." He will also point out, if you give him half a chance, that common sense doesn't require randomized controlled trials (RCTs). It's common sense that kidneys work 24/7 to maintain homeostasis (a constant internal environment in the body)--and that 3x/week treatments are UNPHYSIOLOGICAL and more likely to lead to poor outcomes than longer or more frequent treatments.
Dr. Kjellstrand will tell you that there has never been an RCT done to tell us whether it is better to jump out of an airplane with or without a parachute. He will point out that our knowledge that tobacco smoking causes cancer is from observational studies--not RCTs. (We can't randomly assign people to smoke for 30 or 40 years).
Interestingly, there has NEVER been an RCT of whether survival is better with dialysis than transplant. It seems you can't randomly assign folks to get a transplant. And, in fact, folks who get transplants are highly selected--in that they are screened both medically and psychologically. Yet the entire renal community acknowledges that transplant offers a better chance of survival than standard HD--or PD.
Hmmm. Longer and/or more frequent hemodialysis has what is probably a LESS selected population than transplant. Rich, you are an example of this--in that for a time you weren't eligible for the transplant list, yet you were doing short daily HD. And studies are now suggesting that longer and/or more frequent hemodialysis has survival that is comparable to deceased donor transplant.
It is well past time for CMS to acknowledge the physiological reality and common sense of dialysis--that more is better, and that the 2-day gap is a killer, responsible for (per Dr. Kjellstrand) an estimated 10,000 or more extra deaths in the US EACH YEAR.
Please sign the petition, folks. We can save lives if we can change this policy.
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The only thing I would add is that every other day dialysis should save on the total cost of supporting people with chronic kidney disease. The money saved to the system of avoiding one heart attack hospitalization like the one Rich had would fund every other day dialysis for a year for 50 to 100 people.
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Honestly, Bill, I like Nocturnal because I can cheat on my renal diet and it doesn't show up in labs. Something to think about. I can now have an 8oz glass of milk during my first hour and it gets sucked out in the 8 hour session. That is worth it for me. The lady/guy beside me eats a whole carten of cherry tomatoes EVERY 8 hour session and a HUGE thing of pop. Because we are on for 8 hours. More dialysis may mean more CHEATERS. We feel more normal and pizza really looks good. (tastes good too....oops)
So, it doesn't really decrease my chances for a heart related incident. I put on more fluid because I have 8 hours to take it off.
I was a LOT more strict when I only had 3 hours. I knew I could only put on 1.8 between sessions and now I put on 3 (4 on weekends). BAD I know, but it works and no one says anything! The lady/guy beside me puts on like 12. They do yell at her.
More dialysis may mean "great I can eat and drink what I want"
I'm NOT the poster child for Nocturnal.
And maybe with EODD it is okay to go off the renal diet. Is it?? I didn't ask. I just did it and my labs were fine. But, I know it can't be good for me.
BAD, BAD, Now I've confessed. :stressed; (I ate some Chili Cheese Fires Today) :stressed;
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When I did 5 days a week I still never cheated on my food because I felt crappy when I did. When I talk about how strict I am with food and exercise etc, I'm not judging people who cheat...it's each person's life to do with what they want but my quality of life is so much better when my labs are in order and I also think about the long term effects of things like phosphorus, salt and so on. Even with a transplant I pay very careful attention to what goes in me, nutritional benefits, low fat, low sodium etc because I want to know for sure that I've done everything in my power to be the healthiest I can be. Some of my friends think I'm a bit obsessive but usually those are the people who are overweight, high BP, no exercise even though they didn't start out with health problems. The fear of developing type 2 diabetes keeps me on a certain path with regard to what I put in my body and I really feel for all those who struggle with diabetes and its complications, through no fault of their own.
As crazy as this might seem, I also do not want to burden our health care system and I would feel guilty if I didn't do my part to the utmost. I watched both my parents abuse their health terribly with smoking, my Dad with alcohol and their eating habits sucked. Without preaching to anyone or being a moralistic prig in any way, I cannot do that to my body. I actually like myself too much to not take care of me and I'm the only one who can. Sometimes, in fact usually, in my experience as a therapist, food issues and not taking care of oneself have more to do with underlying issues related to one's life experiences than with will power. As a kid I ate to comfort myself and was very overweight until I was 16. I'm glad I managed to sort those things out well before I had to deal with dialysis and ESRD.
Having said all that, when you do an 8 hour run I think you can afford some indulgences, like a glass of milk for example, because otherwise the severe restrictions can be overwhelming and the cheating more drastic in the long run. Coming in with piles of weight on however, is risky and a real burden for the cardiac system. All the being yelled at in the world won't change the fact that it is we who must choose for ourselves how we treat our bodies.
Sorry for going off topic somewhat here. Now back to the petition about optimal dialysis y'all. :grouphug;
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Thanks Monrein. I don't think you were off topic at all. The topic is to have Medicare pay for everyone who wants EODD. I'm trying to point out that Medicare should not have to take yet another bill to pay for us. Now, maybe we are coming to somewhat of a compromise.
Like transplant waiters..... if you are not compliant you don't get listed or you get pulled from the list. Maybe a good caveat to put in this bill is that those who are not compliant on EODD or Nocturnal go back to the 3 hour conventional (staying alive) dialysis. You should not get a spot on the Nocturnal shift or EODD if you put on 14 kilos in between sessions. AND I'm not being sarcastic... I've seen it happen. If you are willing to grab the chance for a better life then you can't abuse it.
I would sign something like that. :thumbup;
We find it hard to fill our Nocturnal shifts because people don't want to sleep away from home or they don't think they can sleep at a clinic. We have had people try it and go back to regular days. It depends on the person.
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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.
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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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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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Done.
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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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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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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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Thanks Bill. Good to know.