To Coil
Joined: 26 Apr 2003
Posts: 2
Posted: Sat Apr 26, 2003 4:57 am Post subject: Thanks for your input
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Thanks for coming here with your thoughts. All of us can learn.
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patient
Joined: 29 Oct 2002
Posts: 137
Posted: Sat Apr 26, 2003 5:49 am Post subject: reply to Coil
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Thank you for your thoughts and my heart goes out to you for what your parents went through. Nevertheless, I must tell you that I do feel like my life on dialysis has been like a holocaust. Its a slower holcaust then being outright killed, but it is a holocaust, nonetheless. <
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>It is also similar to a POW camp. I have had to witness helpless patients be systematically hurt and tortured. Try to picture your mother or your grandmother, your father, grandfather, mentally challenged cousin or little
other cramped in severe pain, or crashed to the point of vomiting and passing out, and all because the tech didn't know what he was doing. And I'm not speaking about isolated instances, but an ongoing pattern.<
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>I experienced this, myself, but was able to study the tx and find a way out. Most of the other patients aren't as fortunate. They do not have the capacity to rescue themsleves, and with no education provided, they are in a spiriling cycle of seriously flawed care. Add to this, patients are mentally and emotionally abused, being denied care, and they are blamed on top of everything else as if they are the cause of everything!<
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>So what happens next? The patients are so scared, they automatically shield themselves from the terror by dropping off into a deep slumber during txs. Some even hide under their blankets. Can you imagine a grown adult hiding under his blanket? It's horrifying!<
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>The final step is premature death. How long do you think these patients are living? Not long. I know, because I have witnessed one after another die or commit suicide. For those of you who aren't there and don't have to witness this first hand, I guess it's hard for you to imagine. But I'm there and I can tell you - this is a travesty! This most certainly is a holocaust! <
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brenda
Joined: 28 Oct 2002
Posts: 103
Posted: Sat Apr 26, 2003 8:34 am Post subject: Coil I
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truly appreciate your input here in this matter. My
other started dialysis also back in the 70's when they had to be RN's and had further ( as in month's) of training prior to actually doing the treatments. Then there was also a probation period that followed that. It was one hell of a difference then the current treatments that are here in the USA now. They weren't so money hungry back then it seemed and the majority of the techs had compassion. I know where your thoughts are coming from as far as not wanting this to be compared to the holocaust due to your immediate family, and I see your point, as I also have several relatives that are survivors. But I believe what everyone is trying to get across to the others here, is making the comparison that innocent people are getting killed here at the hands of the untrained/unskilled/ don't give a sh.. techs and managers in the units, just because they ask questions, question their care and sometimes because they are left alone and or unattended. They weren't given the choice to need dialysis, just like our relatives and friends weren't given the choice to be Jews etc. So different here then in Canada, but we are making progress to see that these problems are corrected. Hopefully all will have the best all over the world.
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ridgerunner
Joined: 11 Jan 2003
Posts: 101
Posted: Sat Apr 26, 2003 1:57 pm Post subject: quality of dialysis in US
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coil i hope that you keep posting. i know a lot about dialysis in canada in fact i talk with a patient who is on slow daily dialyais. you noticed i did not say noctornal because that gives the impression that doing it at nigh is different. we do it at night because it gives us the days free. i have met and talked to the doctor who started and set the standards for slow gentle dialysis. i have been on the board of network and got to know the head of the net work who was from canada. she said if she ever got sick she would go back to canada. she quit because she saw the abuses. i have been on all forms of dialysis. when i went to a jiffy lube that gave a three hour treatment with reuse. but in reality it was less than 3 hours it was hell. yes we patients accept it because we do not know any better and we older patents have a trust for a person who is a doctor. wheather a patient is on a starvation diet or is grossly under dialyzed they become very dosile and very obedient. ther mental ability becomes very limited. in the death camps they learned that if they tried to work the prisioners they had to feed them more this caused the prisioners to become harder to handle. yes the dialysis inmated in the USA have the same personalities as the inmated in the death camps and about the same years to live. the total costs of dialysis per year in the USA is much greater than in canada. in canada you look to put a patient back to a normal life. in the USA the aim is to milk the cow for as much as possible. also there is a lot more profit in a sick patient.
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LuLuW
Joined: 27 Apr 2003
Posts: 46
Posted: Sun Apr 27, 2003 9:02 am Post subject: Symantics
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Okay, we are witnessing something here on this board that is often the biggest roadblock in establishing reform. We are bickering and quibbling with semantics. For the record, I am considered a racial minority in the U.S., therefore I have experienced racism, discrimination, prejudice and bigotry my entire life. That said, I don't see where comparing my experience as a racial minority and my experience as a dialysis patient can lead to anything productive. Fact of the matter is, both situations STINK, and both need to be changed. Period. And that's why we're here, right?<
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>Now, what this country cares about is , plain and simple. So, what we need to figure out is how we can hit the powers that be in their pocketbooks. I am sickened at how corrupt the dialysis and kidney transplant industry is, and yes, I feel it is corrupt. When I look at how rapidly, drastically and steadily the number of hemodialysis patients in the U.S. has climbed, it leads me to believe that patients are basically being warehoused in dialysis units because it
ings in BIG . In my own case, I held out for as long as I could, but it makes me wonder if there could be something else done to help us as opposed to sending us to dialysis, which is basically a dead end option unless you're fortunate enough to get a transplant. It just seems very suspect to me that in all these years, no other viable and cost effective treatments have been discovered.<
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>Let's stick together guys and gals and kick some serious butt! Let's think of positive things we can do to get the ball rolling!<
>Lu
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Dialysis Business Major
Joined: 03 May 2003
Posts: 1
Posted: Sat May 03, 2003 1:03 am Post subject: Money
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I enjoy coming to this board and advocating for dialysis reform. But I think it is so stupid when you get off on your money tangents because it is the JOB of the CEO's and Medicare to handle that. What do you really want to improve dialysis or get ticked off because someone is making money? If you can get the dialysis reforms you want the money issue will resolve itself. Why waste your energy where it is fruitless.
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dialysis advocate
Joined: 06 Apr 2003
Posts: 2
Posted: Sat May 03, 2003 4:55 am Post subject: Money is it
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The money issue is the problem. You have an industry that is not taking care of the patients with the money that is to go to patient care.<
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>When you have greed, you will always have corruption in some form.<
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>We need to make this industry accountable and to recognize the basic patient rights. You need to have this group of patients that can have a voice and not just have complaints go into a wide circle.<
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>It will take all of these issues to come out, otherwise the sore will errupt again. It has to be set up that the patients have a quality of life and to have rehabilitation.The self policing needs to go. <
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>Until you get the truth out and the horrors out, nothing will ever change. It has been operating underground for over 30 years.<
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>It is about these companies coming in and selling the patient. Until that stops nothing will change.<
>It is about this industry being self policing and patients are kick out of the units and no where to go....because other clinics will not take them in. The only one that I know that has is FMC.<
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>The reforms is to take the "safe harbor" away, and to set up patient rights. To have a complaint system that is not self serving. <
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>We have one chance to clean this up, and everything needs to be exposed. Until the public is outraged, nothing will ever change. We were promised Standards of Care and 3 years later, nothing. The government needs to hold those accountable for the wrong doings of the patients. The lack of rights is astounding.<
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>I get calls weekly asking for help. We now are having help to get this DONE. Not talk about it anymore, but to make the choices of treatment and rehab that was to be honored.<
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>I personally will get it all out in the public awareness. To do a partial job will never work. It needs to be
ought out to the light of day and cleaned up. The money issue and the physicians able to control the patients is what has led to the horrors that many patients do. <
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>We have never stated that all clinics are bad. But a patient needs to educate themselves to know what is going on. It is simply your life.<
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>This week alone we had two major incidences with patient rights.. Both have been resolved. But one has to get out of the circle of this industry and have enough courage to speak out. <
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>At times I wonder as other do, why do we continue. It has taken me personally 5 years. All of us are going for the gold. We will continue to apply pressure until this industry cleans up. <
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>I would suggest that any nah sayers will ask for copies of their states 2567's which are public record from the Health Depts...this will give you an insight of what is going on in this industry.<
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>Once again if a patient dies on the machine be it anything, the patient is sent to the funeral home of their choice and do not have to be reported. It has to take someone to make a physical call and report it,to get it investigated. <
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>For one, I want it all out, our journalist is getting close. We will never have the help like we are having now. To not get it ALL out in the open doesnt finish the job. We are going for it to ALL be exposed. Then lets put it back again for all to have the choices they deserve and to have safe treatments and laws to protect everyone.TO do less would not work.The government needs to get their head out of the sand.<
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>We were talking the other night, it is do able as everyone is check mated with the paper work and the lack of doing anything. The paper trail is air tight.<
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Reading this
Joined: 04 May 2003
Posts: 1
Posted: Sun May 04, 2003 2:16 am Post subject: The Issue
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To dialysis advocate you said it yourself the issues are accountability, selling patients, self policing, patients rights, physician control. If you resolve THE ISSUES this in itself will impact the greed.<
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>If you get a law past which requires proper staffing then the centers will have to hire the staff according to the law.......this in turn will take away some money.<
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>If you get the a law past that takes away the physician control......this in turn will take away some money.<
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>If you get a law past with patients rights........this in turn will take away some money.<
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>If you get laws past to regulate the self policing..........this in turn will take away some money.<
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>If you get laws past to insure modality choice.......this in turn will take away some money.<
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>If you set standards of care higher........this in turn will take away some money.<
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>The centers will have to "SPEND" to meet the requirements of the laws.<
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>Now lets say the issue is money. OK the government says we are going to cut the composite rate.<
>and kick backs.<
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>Does this give you patients rights? Does it stop self policing? Will it stop physician control? Will it improve standards of care? Will it allow for Modality Choice? Will it raise the standards of care?<
>No. All it will do is take away some money. This may make us all happy as some form of revenge but in the long run it will do nothing to resolve the "ISSUES" that we are faced with. I think a lot of focus is lost on the real "ISSUES" and alot of time wasted when we worry about someone ELSES greed and NOT the ISSUES the really AFFECT us. I could care less how much money someone was getting if I we could hold the industry accountable for good staff patient ratios; modality choices; patients rights; honest complaint procedures; adequate training; safe treatments; asceptic procedures; eliminating patient dumping etc. etc. Why are we not trying to get legislation passed to insure these things so the centers can be held accountable through the court of law to higher standards. Did we fail once so we are quitting?
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This industry
Joined: 04 May 2003
Posts: 1
Posted: Sun May 04, 2003 4:46 am Post subject: Greed overcame Ethics
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It is the issue of greed that has allowed these conditions to be present for the patients in dialysis.<
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>No patient will ever have protection in this industry as long as the industry has been allowed to police themselves and your patient rights are violated. I see weekly patients who come to this board asking for help and no where to go. I see daily where patient rights are non existant and the truth not being told. This is the major road block for your health. It is the ESRD NETWORKs being allowed to police themselves at the patients no longer having a place to complain safely. They were not even validating the information and the risks and deaths are never investigated. I have seen a different picture as I deal with this daily. <
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>You can have the best standards of care, but if you have no one neutral to inforce them, what good are they.<
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>Now about giving up, dont think that has ever happened,nor will it. We had the Senate Hearings and truly many of us believed that the Senators would be outraged, the documents were horrific. But we are glad that the hearings happened. Nothing done and they thought we would go away. If we didnt have these hearings first, then when our press came out, it would be OH GOSH, we as the Senators are outraged...only now they have already stated how outraged they were and were fully aware of the conditions. What has happened NOTHING! It continues with their blessings. <
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>So we have gone the government route, and they were given the documents and facts, and for 3 years did nothing. The ESRD NETWORKS still dont protect the patients rights and quality of care. After all they are the industry. Now they need to find out what a Patient Advocate is. The fact is that it is strictly for stalling, as it is a FEDERAL LAW. The fact that they didnt know it was law, is appalling. You need to find out a definition when they arent doing their job. <
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>We had a case last week that a patient was not receiving adequate care. This patient wrote emails to the ESRD NETWORKs, finally called them and they stated they had been reading his emails. This patient asked what does it take for you to intervene. He came to us and the situation was solved in less than 24 hrs. This self policing needs to go!<
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>Now lets talk about the physician who has an invested interest in the patients. Who does your physician belong to? Do they belong to you or the investor's? Does the companies allow only certain items as to cut cost,leaving the physician with selling their prescription pads. One size fits all? Does one allow this field of medicine to be able to purchase the patients from their physician and allow them to put the patients on the stock market. I am not a patient, but every
day we are fighting for patient rights and helping patients to fight the dragon. To have choices and rehabilitation and to give patients a quality of life. I dont think that sounds as if we have given up. It simply is that we now are going for public awareness to
ing the light into this industry that is not doing what is best for the patient.<
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>I am a firm believer that ALL of the truth and documents need to be exposed. Law suits need to continue,as you have no other rights in this industry. They will continue as long as a patients rights and deaths happen from lack of oversight and Standards that every other patient enjoys. It is a dirty industry, like it or not. The truth is getting out, and the politicans are coming into an election year. We have all nice bows and a paper trail that is all packaged and ready to go.<
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>Early on this could of been resolved, only they were Arrogant that we were too small and would go away. We didnt give up, we are stronger than ever, with lots of powerful friends now. We gave the government and the industry the time to do what was right. That is all that we have asked. Not one promise has been kept and the ESRD NETWORK has been allowed to operate the same as before the hearings. <
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>The public will now see what they feel. There will be many red faced Senators. They still have time to do what is right. We havent given up, we only now how more powerful friends that have aligned with this crusade.<
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>But the public needs to know all of the horrors that have been allowed to continue. The money issue will be
ought out, as this is what was to insure the quality of care and quality of life for every patient. It will be interesting how this plays out. They have no one to blame but themselves. Greed overcame ethics.
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yes
Joined: 29 Apr 2003
Posts: 5
Posted: Sun May 04, 2003 5:11 am Post subject: this story will be told
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The entire country will know that greed overcame ethics.
