I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: plugger on August 15, 2013, 04:15:12 PM
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A person can spend their time supporting these dialysis companies in their quest to protect their over-sized profits from medicare cuts, but if history is any guide it looks like money isn't the problem:
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From ’91 to ’01 expenditures for End Stage Renal Disease nearly tripled, while the number of patients only doubled – yet deaths were up 123%
www.usrds.org Annual Data Report 2003 pg 172, population up 106%, deaths up 123% from ’91 to ‘01 (I should add the for-profit companies – such as Davita – were taking over this area of medicine during this time period)
"In 1991 Medicare expenditures were $5.8 billion, and non-Medicare costs from heath plans and other coverage were $2.2 billion—a total, then, of $8.0 billion from all sources (see Figure p.6 on page 17). By 2001, costs of the program had reached $22.8 billion, almost triple the earlier level of expenditures"
2003 USRDS Annual Data Report
http://www.dialysisethics2.org/index.php/Our-Concerns/fact-sheet.html
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"Italy has one of the lowest mortality rates for dialysis care -- about one in nine patients dies each year, compared with one in five here. Yet Italy spends about one-third less than we do per patient."
http://www.propublica.org/series/dialysis
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But if you want to spend your time supporting an organization that could bring about real change, I would suggest an organization being supported and led by the most vulnerable of dialysis patients: dismissed patients!
Dialysis Advocates (http://dialysisadvocates.com/) started as an organization with it's founder helping patients who had been unfairly dismissed from their clinics. It is now evolving into an organization with patients helping patients.
And now it is joining forces with the Civil Rights movement and leaders Rev. Floyd Harris and Dr. Jean Kennedy. They have been shocked by the abuses they have seen and are determined to turn this into a Civil Rights movement.
From everything I've seen and heard, I sincerely believe this is going to be a movement that will spearhead some real change!
http://dialysisadvocates.com/
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Read and see the people behind this:
http://dialysisadvocates.com/patient-stories/
Hear their voices!
http://www.blogtalkradio.com/realtalk1dr/2013/08/13/real-talk-to-achieve-real-solutions (latest)
http://www.blogtalkradio.com/realtalk1dr/2013/06/11/rev-harris-dr-kennedy-interview-patients-advocate
http://www.blogtalkradio.com/realtalk1dr/2013/05/22/rev-harris-dr-kennedy-interview-arlene-advocate
http://www.blogtalkradio.com/realtalk1dr/2013/05/15/rev-harris-dr-kennedy-interview-arlene-mullin
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According to the dialysis advocates' facebook page, demonstrations are being planned in Los Angeles and Oakland along with some other groups.
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I listened through the first link and was turned off with the association of Civil Rights and lynchings.... WTF
I'm glad we have people looking into this. I know I have felt retaliation for asking too many questions and if they dismiss a patient we don't have too much time to fight and then we DEAD.
I will call this Arlene tomorrow to get more information. I like the fact that we are gearing up to fight these multi-gazilllian dollar centers as our care gets worse but I don't want to be associated with that Rev. blasting off about slavery. We all the same on Dialysis.
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I called Arlene this morning. She is there fighting for us like Karol and Sluff are fighting for us here. Not on dialysis herself, but worked in the industry and saw too much. Go to her site listed by Plugger and take a read. I've invited Arlene to our site as well.
We need a change and it will take us patients to make it. These huge companies make too much money and it only goes up not down to us as patients. Now they want more and don't want to take cuts like Medicare is having to make.
And if you ask too many questions..... you may be dismissed from the center and have no where to go.
:Kit n Stik;
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Rerun,
Great to hear you had a chance to talk to Arlene! I will always thank her and our old friends for being there when I needed them. Thanks to them I don't have a horror story like many of the patients you hear from on the above links. My daughter was able to have dialysis in peace way back when while I took the heat for getting her off reuse, questioning their dry weight procedures, worrying about: staff's lack of training, their high patient/staff ratios, and my daughter's short dialysis runs.
Arlene and friends were there to back me up with some credibility in regards to what I was saying. Though I was getting blame for things I didn't do (another story) and the charge nurse did drag me into her office (felt like I was in the principal's office) and inform me they had a meeting about me. They decided they weren't going to throw my daughter out and would learn to put up with me (a little intimidation?). Did they do this out of the goodness of their hearts? - or because they knew Arlene and friends were backing me up?
I don't know, I listen to these stories about dismissed patients and have to wonder if the Reverend's remark about lynchings is that far off?
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From the dialysis advocates' facebook page:
"We will be on the Radio with Chili Most and it will be broadcast from my understanding in Alabama,Nationwide and International.
I will post the FM station number next week.
It will be live on Sept 3rd with Arlene and Sept 9th with Bill . It will be at 8:30 am PT.
Look him up on UTube, he also is a musician. It looks as if we are rolling along to get the plight of dialysis patients out."
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Did I miss something here? The problem seems to be the mistreatment of people who are already patients. Demonstrations in Oakland? Get real; how many people in the general population know anything about dialysis? Who cares?
I was not a good patient, not when I had major surgery and not when I was on dialysis, and I am especially bad when doing regular doctor visits. Why? Because at least one doctor has lied to me resulting in major surgery and a complete change in lifestyle. While on dialysis I found the attending nurses to be especially offensive, mostly due to inattention to my needs and the needs of all the patients in the room while I was there. I had to calculate my own dry weight/water retention causing me to instruct the nurse on how much to take out.
And I will not forget the male nurse farting while making some adjustment to the equipment. Okay, that isn’t major, but it does reflect an attitude. I am not on dialysis because by my own analysis I didn’t need it. I called in a reluctant doctor to test and they released me.
I spoke for every patient in that room. When I stop by now and then, they remember. I don’t ask to go into the treatment room, I just go in. I hope I did some good.
Pardon my skepticism but I don’t think demonstrations in Oakland is your best approach. Trying to relate dialysis to lynching will not work – nobody knows what dialysis is all about. Old people are not going to participate in a demonstration on a level that changes minds, you need the younger folks and they will burn bras and draft cards because that affects them. Dialysis, that’s another game. Take it from an old protest sign carrier, if you can’t convince me of the righteousness of your cause, you will lose. I have seen both sides.
gl
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Gerald,
It looks to me my friends are focusing right now on these clinics acting as judge, jury, and executioners - we are talking basic human rights here, sentencing without so much as a trial. We treat prisoners needing dialysis better!
And no, I don't expect too many dialysis patients to show up at these demonstrations, but it looks like Arlene and friends have worked hard to form alliances with some of these civil rights groups and they are appalled - and working on getting their people out.
You can try to predict how it will all turn out. Me, I believe in doing what your heart tells you is right - win, lose, or draw; I'll leave predictions to others. To tell you the truth I was surprised when our group here got the Colorado state bill for tech certification through the first time back in 2007, so you just don't know how things can turn out. But this looks to me like a path work trying.
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What I would like to happen is have a 2 day strike on these centers. I could live from Monday to Thursday without dialysis. I would just go on the Emergency Diet. If all dialysis patients skipped one dialysis session and put these centers DOWN. Kick them right in their pocket books.
What do you think? Who is with me. Lets do it in October.
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Rerun,
No!!!!! - please hold your horses for just a bit. I talked to Arlene and we both agree we don't want to see anybody retaliated against and endanger their health - especially at this point (though we both admire your fighting spirit, always been hard to get dialysis patients to stand up). Arlene mentioned she isn't sure she and our friends could handle a big flood of dialysis patients who had their clinics wanting to thump them.
Arlene is asking most patients to wait until after the demonstrations to see where we go from there; just talking to her it sounds like there are a lot of irons in the fire. One of Arlene's favorite sayings over the years has been "one horse leads the charge". It looks like our money is on Rev. Harris for this. If patients want to talk or write they can contact Dialysis_Advocates (http://dialysisadvocates.com/) and you can follow what is going on at the Dialysis Advocates facebook page.
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Okay.
>:(
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Rerun,
Sorry! But I do like the way you think!
And it does look like we won't have to pull out the sledgehammer quite yet. From the dialysis advocates facebook page:
"Demonstration is still on. Massive planning is going on now, to organize and many more Radio shows.
We are going under the Civil Rights leaders. It is amazing to watch the Churches and other groups organize."
https://www.facebook.com/DialysisAdvocates
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What I would like to happen is have a 2 day strike on these centers. I could live from Monday to Thursday without dialysis. I would just go on the Emergency Diet. If all dialysis patients skipped one dialysis session and put these centers DOWN. Kick them right in their pocket books.
What do you think? Who is with me. Lets do it in October.
Wow, what a concept. That would impact their budget in a big way and be a sort of hunger strike at the same time. Obviously, not all patients could participate, but what a concept. If it is OK with you, I will run it passed a friend of mine as well.
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I suppose a 2 day strike is something to think about if there is a major roadblock.
But for one of the few times in my 13 years of watching this, it looks like this area of medicine just might get the attention it deserves.
From the Dialysis Advocates facebook page:
"Keep your fingers crossed...the ACLU may take Thomas case in Nashville (home dialysis patient who was dumped). This would put a stop to this insanity and bring accountability.
We contacted them and have a conference next week...!
Still doing the demonstrations...! It is in the works and will fill everyone in as information is given to us..."
https://www.facebook.com/DialysisAdvocates
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Could you give some info on the Thomas case. Why was he dumped and who did it .etc.
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I sit incenter for 8 hours and when the air Conditioning shuts off this putred smell engulfs my chair. The drains don't work right and our waste smell surrounds us. They spray them with bleach etc... But, can't afford to get a plumber. OMG Really? This DaVita can't afford to get the drains fixed...... So I have to suffer not feeling well plus this god awful smell.
That is abuse. :stressed;
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Next time you go for dialysis bring a bunch of the car deodorizers/ scented hanging things and hang them all over your dialysis machine before you sit down. Maybe that will get their attention . At least it will smell better.
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I sit incenter for 8 hours and when the air Conditioning shuts off this putred smell engulfs my chair. The drains don't work right and our waste smell surrounds us. They spray them with bleach etc... But, can't afford to get a plumber. OMG Really? This DaVita can't afford to get the drains fixed...... So I have to suffer not feeling well plus this god awful smell.
That is abuse. :stressed;
Besides complaining on IHD, have you filed a grievance with your ESRD Network and State Surveyors?
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Could you give some info on the Thomas case. Why was he dumped and who did it .etc.
Mr. Thomas was dumped for missing appointments - he denies this, and claims to have been the perfect home dialysis patient for 7 months. It was davita and Dr. Gerald Schulman MD (Professor of Medicine of Vanderbilt University of Medicine) who dumped him. Believe this is all I can say for now. For more, check out the Dialysis Advocates' facebook page:
https://www.facebook.com/DialysisAdvocates
And the news section:
http://dialysisadvocates.com/news/
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I read what I could find. The whole thing is very sad and disturbing.
I think one thing I have found in my area and is probably true everywhere is the doctors and staff of these dialysis clinics dont think about how stressful and life altering dialysis is. I have mentioned this to our social worker. At least she listened. The stress and pressure can lead to what appears to the staff as "poor behavior and non-compliance" on the patients part. What is really occurring may in fact be more stress related and feeling out of control on the patients part.
My wife and I have talked about this at length. At times we feel "invaded" by all the dialysis staff and rules. We do home dialysis so we have a bit more control but still feel inundated at times and it is very stressful. When she was in center for the first 2 months it was far worse and we were constantly butting heads with them .
Dialysis is hard enough on patients and family, but when the staff adds to it it can become untenable and lead to stress related "acting out" . If you put enough stress on any living organism it will react and sometimes vehemently. Its almost a "flight /fright reaction.
Discharging a patient is virtually a death sentence and is unacceptable , period. ! There are ways to work out the issues but discharge is wrong and immoral. Shame on any doctor or staff that takes poart in that.
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I know what you mean, it was hard enough to accept my then 18 year-old daughter was probably going to have to deal with kidney disease for the rest of her life. Then add on top of it a staff that felt compelled to toe the company line - no matter what. It was hard not to boil over, which would have made things worse.
The closest I came was my discussion with the people at the clinic over reuse. I brought in studies that looked pretty darn reputable to me and the doctor just seemed to come back with "you aren't a doctor". The doctor finally backed off and did put my daughter on single-use, I like to think it was out of the goodness of his heart. But I don't think it hurt when I let him know Arlene Mullin and friends were watching this. I also checked to make sure they didn't slip in a low-grade dialyzer, which they didn't after being assured by Arlene Mullin and friends it was the finest kind.
The reuse studies I've seen over the years seems to be a battle of what I'll politely call "good company people" vs. such notables as: University of Oxford (England), the government's National Institute of Health, John Hopkins, and Fresenius.
http://www.dialysisethics2.org/forum/index.php?topic=57.0
http://www.dialysisethics2.org/forum/index.php?topic=58.0
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(From the dialysis advocates facebook page)
GREAT NEWS!
It appears our patient in Nashville (Thomas case ACLU is taking), is now accepted in a Vanderbilt clinic.
It appears that they had a change of heart. It was a close call that he didn't die..he is not doing well...hopefully this will end this insanity.
https://www.facebook.com/DialysisAdvocates
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We treat prisoners needing dialysis better!
This is quite literally true.
If your doc wants to get you a 200 or 250 filter at FMC, (s)he must apply to the P&T board - Pharmach & Therpapies a/k/a cost control. Federal prisoners at Devans, MA used to get only 200s, but a RN who has worked there told me they are now all getting 250s.
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Knew it!! Now we see more proof.
Anyway, from Dialysis Advocates:
"Radio show is starting up on Tues Oct 1st. at 9 pm Pacific time.
We will be discussing Dialysis issues, and how patients can protect themselves. Lots of good advice.
Patients will also be able to talk about issues that their names will not be used, unless they want to.
Workers also have been abused as far as patient quota's.
Our show is going to be called "Lets talk about Dialysis" and lets come up with solutions.
We are non-industry and will keep you Confidential.
It will be on Blogtalkradio..number to call in is 1-818-572-2947"
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More info can be found at: https://www.facebook.com/DialysisAdvocates
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I thought this first show went great!!! And if you want to listen to it and learn about your rights and what to watch out for at the clinics, you can give it a listen at: http://www.blogtalkradio.com/nnia1/2013/10/02/lets-talk-dylasis
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About "Lets Talk Dialysis" radio show:
Last night's 2nd show featured an attorney, Joseph Santoli, being interviewed by someone who has been on dialysis and has been helped by Dialysis Advocates, a lady by the name of Abby.
Abby's story:
http://www.dialysisethics2.org/forum/index.php?topic=466.0
The subject was granuflo and naturalyte and the problems they caused. Arlene Mullin Tinker hosted and Rev. Harris dropped by.
2nd show:
http://www.blogtalkradio.com/nnia1/2013/10/09/lets-talk-dialysis
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Dialysis Advocates had 4 patients on Tuesday and covered a variety of topics: staffing, for-profit vs. nonprofit, infections, length of runs, home dialysis, staff intimidation, dialysis in Texas, staff/patient ratios, experience with reuse, etc...
http://www.blogtalkradio.com/nnia1/2013/10/16/lets-talk-dialysis
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Thank you Plugger!
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You are welcome! And I forgot to mention they also talked about blackballing.
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Hear about dialysis from a tech's perspective! Arlene and Deborah interview a worker who has worked in dialysis since 2000 and has a relative on dialysis: http://www.blogtalkradio.com/nnia1/2013/10/23/lets-talk-dialysis
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Last night Arlene hosted and Deborah interviewed Willie, a dialysis patient from New York City who has seen the rough side of life in and outside of dialysis. A mother of a dialysis patient was also on and a patient by the name of Griffin. Rev. Harris also spoke about organizing. As usual, another great show!
http://www.blogtalkradio.com/nnia1/2013/10/30/lets-talk-dialysis
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Last Tuesday's show featured Deborah interviewing patients Willie, Charles, and Larry Hall. The first four minutes of the show Deborah gave out contact info and got a hold of the various guests. They talked about how blackballing occurs, what to do if provoked, how Dialysis Advocates helped them, the importance of getting your records, and more! Another show you don't want to miss!
http://www.blogtalkradio.com/nnia1/2013/11/06/lets-talk-dialysis
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Thank you Plugger!
:thumbup;
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You're welcome! I ought to mention Larry Hall was one of the people featured in this article from Propublica: http://www.propublica.org/article/in-dialysis-life-saving-care-at-great-risk-and-cost . Propublica did a series of articles on dialysis sometime back, and for those who missed it here is the link: http://www.propublica.org/series/dialysis
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Last Tuesday's "Let's Talk Dialysis" show was called "Tricks of the Trade". Deborah, Larry, and Charles talked about things the immature, bad seeds among staff would do when unhappy with patients. Ever wonder what happened to the high school bully? -looks like some of them are working in dialysis.
But let's thank those members of staff who have stood up to them and don't be afraid to call Dialysis Advocates:
Contact info:
http://dialysisadvocates.com/patient-contact/
The show:
http://www.blogtalkradio.com/nnia1/2013/11/13/lets-talk-dialysis
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Last Thursday some of us old school people got together to help launch the new school Dialysis Advocates. This show featured Dialysis Advocates and Dialysis Ethics founder Arlene Mullin-Tinker, Lawyer/Journalist Carl Ginsburg, and myself - and of course Deborah hosting it.
http://www.blogtalkradio.com/dialysisadvocates/2013/11/29/lets-talk-dialysis
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Lets Talk Dialysis!
November 26, 2013, Tuesday
Show Title: "Dialysis Workers Speak! "
We were told by dialysis workers that they feel they were unjustly portrayed on our, November 14, 2013, Thursday, show. That show was titled, "The Tricks of the Trade"! We had patients speak about the abuses they endured at the hands of their caretakers. We welcome all points of view!
****Now is the time for the workers to have their say! If you are a worker at a dialysis clinic and you would like to respectfully speak on our show call 1 (347) 857-3961.
Show Times and Hours:
Thursday
6:00 pm Pacific Time (7:00pm Mountain Time, 8:pm Central Time and 9:pm Eastern Time).
Disclaimer: We at dialysisadvocates.com value all points of view.
http://www.blogtalkradio.com/dialysisadvocates
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Thank you Plugger!
Rerun, Moderator
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You're welcome!
And another program:
http://www.blogtalkradio.com/dialysisadvocates/2013/11/27/dialysis-talk-dialysis-workers-speak
It was an informative show! I've been watching this for quite a few years and I didn't know how you could get in trouble with these AMA's (form they give when getting off a machine early). If nothing else and forced to sign, remember to put the letters "UD" after the signature: stands for signed "Under Duress".
Anyway, the show featured a tech Maurice - a person who has previous medical experience, Arlene a former tech, Charles a patient, and a guest patient. Highlights I recall are of course the AMAs, how a person doesn't have to abide by a clinic's self-imposed chain-of-command, the importance of journaling and getting your paperwork, and the advantages of having cameras in the clinics.
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This week Chili Most - who was there when musical artist James Brown needed him - gave the show a religious flavor. He talked about the upcoming "Stop the Violence" campaign coming up in January involving ministers worldwide! We can all pray Chili will be successful in getting their attention about what dismissed patients are experiencing. Dialysis Advocates founder Arlene, patients: Larry Hall, Willie, Charles, and host Deborah were all there! Listening to the show a person might understand why some of these clinics raise fear in even seasoned war vets (no reflection on those staff we know are doing their best - wishing away the headwinds you face). In news you can use, learn how you can refuse staff who are hurting you:
http://www.blogtalkradio.com/dialysisadvocates/2013/12/06/dialysis-talk-chili-most
list of latest shows:
http://www.blogtalkradio.com/dialysisadvocates
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This week's show was jam packed! On the show were: special guest Alyssa - patient, and small business owner offering her surprises, Larry the Legend (nice ring to it), Deborah the host, a Guest who has been on dialysis 20 years, and me.
The talk was about catheters, bad sticks, dialysis company priorities, crit-lines, reuse, how to take control, what to watch (body signals were a big one), AND HOW HIPPAA FORMS CAN NOW BE DOWNLOADED!
And I will mention I threw out a quote about Dr. Belding Scribner. If nominations were taken for a patron saint of dialysis, he would be my nomination (maybe we can get the pope involved in this).
This week's show:
http://www.blogtalkradio.com/dialysisadvocates/2013/12/13/dialysis-talk-what-i-wish-i-was-told-before-i-started-dialysis
Latest shows:
http://www.blogtalkradio.com/dialysisadvocates
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This week's show was an eyeopener! Many patients got a chance to ask Maurice - a very knowledgeable and experienced tech - questions about their care and what happens behind the scenes at the clinic.
Discussions included: infections, the shakes during dialysis, arterial and venous pressure, blackballing, machine setup, meds, pulling fluid, asking questions, temperature settings, care plan meetings with staff which should occur once a month, alarms, HIPPAA forms and violations, trouble with dialysis prescriptions and attempts to use generic prescriptions, techs getting called to the office, questions to ask staff about your prescription, getting a printout of your prescription, getting a "Medical Release Form" (sounds like includes printouts and what has been said about you).
And to conclude, they mentioned: the importance of getting flow sheets, getting family and friends involved, and allying with techs.
This week's show:
http://www.blogtalkradio.com/dialysisadvocates/2013/12/20/dialysis-talk-dialysis-tech-answers-patients-questions
Latest shows:
http://www.blogtalkradio.com/dialysisadvocates
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I just wanted to let everybody know all the people from the "Dialysis Talk" radio show have decided to take a break until Jan. 9th.
But catch-up on shows you may have missed:
http://www.blogtalkradio.com/dialysisadvocates
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Break is almost over! The Dialysis Talk show will be back this Thursday Jan. 9th at 6pm Pacific time, 7 Mountain, 8 Central, and 9pm Eastern.
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The title of this week's show was "Listen Up!", what patients would like to tell their clinics and associated organizations. It was mentioned how staff could treat patients better, more respect could be shown, importance of taking charge of your treatment, how units seem to have the power over the doctors when it should be the opposite, nephs may know kidneys but not always the machines, how it is tough to get the networks to listen, cameras in the clinics, consequences of low blood pressure, imbalance of staff/patient power, what not to do when speaking up, knowing your body, going to a private doc to get your CDC blood test, individualized treatments, timely labs, asked staff to stand-up and be more knowledgeable, how clinics can knock a patient off the transplant waiting list, and getting DOCUMENTATION was mentioned: AMA sheets and flow sheets.
This week's show:
http://www.blogtalkradio.com/dialysisadvocates/2014/01/10/dialysis-talk--listen-up
Latest shows:
http://www.blogtalkradio.com/dialysisadvocates
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Thank you Plugger for ALL you do for us.
:cheer:
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You're welcome! Figure the least I can do at this point is a little advertising and getting the word out.
This week's show talked about an AP reporter who is looking into things and how this person can be contacted. It was also mentioned again how religious leaders are getting involved.
The history of the networks was discussed and how in 16 years of advocating Arlene, a founder of Dialysis Advocates, hasn't seen the networks help one person! Also discussed: how clinics are manipulating infection stats by sending patients to their primary doctor or ER so the clinics don't have to report an infection, the need for an appeal process, the lie that patients talking to patients is a HIPPAA violation, HIPPAA forms to authorize an advocate (see below), how the states and the networks are too close, and much more!
HIPPAA forms for an advocate (useful even if not using Dialysis Advocates):
http://www.cms.gov/Medicare/CMS-Forms/CMS-Forms/CMS-Forms-Items/CMS012207.html
More on forms, networks, and news:
http://dialysisadvocates.com/news/
This week's show:
http://www.blogtalkradio.com/dialysisadvocates/2014/01/17/dialysis-talk-the-esrd-networks-and-cms-leave-patients-vulnerable-to-abuse
Latest shows:
http://www.blogtalkradio.com/dialysisadvocates
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This title of this week's show was "Harassment in the Clinics" and the show has been increased to two hours! It was emphasized not to argue and cuss; but to document, log problems, and file grievances with the clinic and the state. Also mentioned was what might be put in your records, confrontations about not changing gloves, how patients have been pitted against each other, AND THE IMPORTANCE AGAIN OF GETTING YOUR FLOW SHEETS. One patient told the story of getting kicked out after being on dialysis for 20 years (medical director who backed her up left the clinic leaving her with an FA who disliked her). Other subjects were the ESRD networks not helping (have heard that one over, over, and over), and how you can call 911 if there is a problem.
Another patient also told how staff admitted harassment on a Facebook page that is new to me: Dialysis_Discussion_Uncensored (https://www.facebook.com/groups/DialysisUncensored/). Didn't get a chance to hear the whole two hours, but did also hear the importance of not signing off if a person gets off the machine early and rinseback was mentioned.
And finally there was a great story about patients throwing a party for a staff member who was concerned about patients' care and taught them what they needed to know! (love to hear those stories)
This week's show
http://www.blogtalkradio.com/dialysisadvocates/2014/01/24/dialysis-talk-are-you-being-harassed-in-your-clinic
Latest shows:
http://www.blogtalkradio.com/dialysisadvocates
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Also, remember home dialysis is a viable option - both hemo and peritoneal. This eliminates any issues one may have with the centers and put the responsibility for one's health on one's self which is usually a good thing. :)
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Also, remember home dialysis is a viable option - both hemo and peritoneal. This eliminates any issues one may have with the centers and put the responsibility for one's health on one's self which is usually a good thing. :)
You still have to deal with the home therapy support RN at the center, but the person who gets that job (centers that support home protocols usually have just one such person) is generally the cream of the crop. The great thing is that you get to be your own tech.
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Exactly Simondog and anything that reduces stress and discomfort increases the likelihood of adherence to dialysis.
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Exactly Simondog and anything that reduces stress and discomfort increases the likelihood of adherence to dialysis.
Absolutely. Although dialysis sucks, I look forward to my treatments as I consider it resetting my death clock by 2 days.
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Exactly . . . we all know it only takes a couple missed sessions and it's bye bye world. . . Keep going my friend. If you would like to receive a support bag, message me with your mailing address and I will send you one. My Foundation provides them free to dialysis patients.
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Exactly . . . we all know it only takes a couple missed sessions and it's bye bye world. . . Keep going my friend. If you would like to receive a support bag, message me with your mailing address and I will send you one. My Foundation provides them free to dialysis patients.
Thanks for the offer but I have thus far avoided the need for any "support" from anyone other than my family, clinic and insurance company. I still work full time so I don't need to sponge any freebies, and would prefer you send them to someone not in a position to provide themselves with whatever goodies will make dialysis go a bit easier.
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Exactly . . . we all know it only takes a couple missed sessions and it's bye bye world. . . Keep going my friend. If you would like to receive a support bag, message me with your mailing address and I will send you one. My Foundation provides them free to dialysis patients.
Thanks for the offer but I have thus far avoided the need for any "support" from anyone other than my family, clinic and insurance company. I still work full time so I don't need to sponge any freebies, and would prefer you send them to someone not in a position to provide themselves with whatever goodies will make dialysis go a bit easier.
Simon Dog,
I am thrilled to hear that you have been able to get the support you need. Does your dialysis center also provide goodies? I know different providers have different practices.
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Simon Dog,
I am thrilled to hear that you have been able to get the support you need. Does your dialysis center also provide goodies? I know different providers have different practices.
I got a little flashlight at Valentine's day and a hat/glove/scarf set at Xmas, but other than that it is pretty much just business.
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Nice to see people helping themselves as much as they can!
Anyway, this week's show had special guest Chili Most; he is known for his music such as "Fight_for_your_Rights" (http://www.youtube.com/watch?v=GizWMka6n3I), his involvement in the "Stop_the_Violence" (https://www.facebook.com/events/252638361522879/) campaign, and his work for musical artist James Brown.
Chili Most has been helping Arlene_Mullin (http://dialysisadvocates.com/committed-advocacy/) with media appearances across the country on behalf of dialysis patients. Subjects touched on were organizing, how staff will ignore patients when unhappy, again: the importance of documenting AND GETTING YOUR FLOW SHEETS, a comparison to modern slavery, sticking together, not signing anything while on the machine, one patient stated how a person can report problems to the Medical Review Panel and the Schumacher? Group besides Dialysis Advocates, also there was a question about open and gravity feed systems, etc...
This week's show
http://www.blogtalkradio.com/dialysisadvocates/2014/02/07/dialysis-talk-chili-most-speaks
Latest shows
http://www.blogtalkradio.com/dialysisadvocates
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Can a non american be controversial for a moment, why do you need all these centres in the first place. What if just for fun we rate all US patients by New Zealand, Australia, or Canada policy. What percentage would be fit for home care that are not in home care, and does this not result in enough savings for the rest?
In centre is the most costly of all dialysis and should only be available to those in need of addtional care. Why waste nurses, doctors, a bed, for me when that cost should go to a very ill person. In NZ only hospitals provide in centre and those are all public. Its expensive at $164 US per hour in NZ. At 636 standard HD hours per year thats $104,000 just to run the machine.
So why can I do 2100 hours per year and it only costs $11.48 per hour or $24,000 per year. Its because I choose to get the out of what im provided. Most home dialsys patients here do 1272 hours per year and it costs $19 per hour.
So there is your savings and everyone wins. The state wins financially, and so does the insurance co, the patient wins as more hours means better health. There will be less doctor visits.
I see my doc every 6 months. My techician is an email or phone call away and has 30 patients like me.
Private centers are only there for profit and unless offering extended they are not in it for you. Imagine incentre extended at $1312 per session. Wow I can do it for $91.84 plus power and water
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It's not that simple. Anyone who lives in a nursing home has to go in-center. The nursing homes are not set up for home dialysis, esp storage but also any assistance needed. Here almost no clinics will allow home hemo without a care partner who trains with you. I live alone so it wasn't an option for me. I did PD at home but a lot of people don't have storage room. Medicare rules do not allow us to go 6 months between doctor visits.
Do they limit who may be on dialysis in NZ? I know so many who are on dialysis who are not capable either physically or emotionally of doing their own dialysis.
I understand the numbers and the cost. I just know it would take a huge culture change here.
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Home hemo requires a lot out of patients physically and mentally. Many just cant do it. I am a big fan of it but realize many cant do it.
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Absolutely agree with whats been said. Its a massive change for the US. I never said all patients only those who were assessed as potentially independent, and that should require a home review as it does in NZ. They are very comprehensive in their checks, but we do allow self care. To answer directly, a nursing home patient will always be in-centre. The level of dialysis will relate to several conditions and some may only be on maintenance (once per week) if they are totally bed ridden. The mortality rate for in-centre is remarkably short as compared to home PD or hemo, however in NZ most of that statistic is probably tied up in the fact younger patients either never see a hospital bed (as they are home trained before needing dialysis) or like me they see 1 year until stable enough to leave.
As far as I know there are no PD units other than for home training in NZ, and some emergency hospital units for in-patients. As for hemo, before 2009 there were only 2 units across our 9 regional cities. Those 9 have been combined into 1 super city and in my area of that (north) since 2009 1 public centre has been built and one more goes live next month, but its main function is a home training unit. That's all we have, and good luck if your in the south island where the land is vast and population low so in-centre services are unaffordable outside the main cities.
As a state funded health system we keep it lean and mean, and basically that's great for people like me. My life expectancy was 7 years in-centre and now jumped to 25 based on our model.
All I'm saying is that cutting cost is a reality for all western governments as many of us are living un-subsustainably. But that does not mean people on dialysis need to suffer. We just need to think outside the box and make it happen. If smaller countries can do it then there no excuse for a big ones with significantly more resources.
Fresenius has centres in the US, and also one in Auckland, but in my discussions with them on portability they were not overly happy with business - why, cause there isn't any. The public system is very efficient at managing this resource hungry and expensive disease so only a handful of tourists (probably with medicare) keep the unit afloat.
Looking at the current US medicare and Social Security liability, I'd say its in every patients interest to change the system. We (as dependent on machines) are very exposed to environmental shock. I know my risk profile - I live in a city of 56 extinct volcanoes, in a country that suffers from over 400 earthquakes every week. There is no where near enough hospital machines for every patient in the event of a crises. That's why I'm putting in backup water and generator as insurance, because lets be honest I am liability and in the event of an infrastructure or financial meltdown I'll be forgotten.