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Author Topic: Please sign a petition to support me and others on dialysis  (Read 25600 times)
Hemodoc
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« Reply #25 on: March 12, 2009, 10:30:23 PM »

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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Peter Laird, MD
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Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
Wattle
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« Reply #26 on: March 12, 2009, 10:59:37 PM »

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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« Reply #27 on: March 12, 2009, 11:00:17 PM »

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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« Reply #28 on: March 13, 2009, 08:01:00 AM »

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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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."
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« Reply #29 on: March 13, 2009, 09:04:26 AM »

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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sandra3105
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« Reply #30 on: March 13, 2009, 09:39:30 AM »

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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Hemodoc
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« Reply #31 on: March 13, 2009, 10:14:28 AM »

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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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #32 on: March 13, 2009, 11:02:15 AM »

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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Hemodoc
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« Reply #33 on: March 13, 2009, 12:22:38 PM »

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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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #34 on: March 13, 2009, 01:07:05 PM »

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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« Reply #35 on: March 13, 2009, 02:16:54 PM »

okarol, how was the play?  :waving;
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« Reply #36 on: March 13, 2009, 06:03:11 PM »

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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« Reply #37 on: March 13, 2009, 06:16:20 PM »

 

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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« Reply #38 on: March 13, 2009, 07:06:23 PM »


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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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."
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« Reply #39 on: March 13, 2009, 07:13:08 PM »

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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« Reply #40 on: March 13, 2009, 07:18:07 PM »

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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« Reply #41 on: March 13, 2009, 07:38:15 PM »

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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« Reply #42 on: March 14, 2009, 03:48:04 PM »

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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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
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        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #43 on: March 14, 2009, 03:52:42 PM »

okarol, how was the play?  :waving;

Here's more http://ihatedialysis.com/forum/index.php?topic=12869.0
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« Reply #44 on: March 14, 2009, 09:48:53 PM »

Rich Berkowitz has a great post 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 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 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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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
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« Reply #45 on: March 14, 2009, 09:53:47 PM »

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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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
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« Reply #46 on: March 14, 2009, 10:09:16 PM »

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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« Reply #47 on: March 15, 2009, 01:08:48 PM »

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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Pyelonephritis (began at 8 mos old)
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Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
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Second trx doing great so far...all lab values in normal ranges
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« Reply #48 on: March 15, 2009, 04:47:08 PM »

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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« Reply #49 on: March 15, 2009, 05:40:25 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.
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

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