CONGRATULATIONS to patients...

[PatDowns]

...who stay with DaVita and Fresenius.  Thanks to you, both companies recently reached new 52 week highs on the NYSE:

DaVita -  $88.08 - 4/4/11

Fresenius - $70.86 - 4/7/11

Stay at it and allow them to continue to profit off your suffering.  B**ching and whining on a blog ain't gonna change a thing.  And don't say, "we have no other choice."  Your other choice is to become squeaky wheels and go to the media, state networks - whatever it takes - and DEMAND good care!

http://www.nyse.com/about/listed/lcddata.html?ticker=FMS

http://www.nyse.com/about/listed/lcddata.html?ticker=DVA

[Jie]

You know why they reached 52-week high? My PD cost has almost doubled during the last two years. The real cost from me to my clinic has not changed much. It is the profit margin my clinic makes from me that has almost doubled. I think some investigation is needed how these companies justify their charges to the private insurances.

[jbeany]

Ya know, Patdowns, there are people on here who are active, vocal participants in the process.  Search Bill Peckham's posts and check out his website.  He's testified before Congress, if I remember correctly.  There was someone on here pushing for legislation to raise the bar for dialysis tech training (Plugger?  Sorry, no sleep = no memory.)  Hemodoc regularly contacts the media and is involved in trying to change things.  Darthvader is a regular protester, frequently appears on TV interviews, and raises funds.  Karol, Sluff, KitKat, Rerun, Epofriend, among others put time and effort into moderating this board and keeping an active website running smoothly so that we can network and help each other and share information with the over 5000 members here at IHD.  A tally of people who have participated in NKF fundraising walks would take far too long to list.  Many of us follow the links the activist members post on here, and add our voices to the messages being sent to Congress, either by letter, e-mail, voting, and doing what we can in our local community to change the situation for people near us.

But not everyone is capable of that.  Some of our members on here are barely keeping our heads above water just trying to deal with our health issues, our finances, and our family obligations.  So I take offense at your tone when you tell us we all need to stop "bitching and whining on a blog."  It's not a blog, it's a support group, and we're all supporting each other and ourselves as best we can.

And yes, the reality is, not everyone has access to a different clinic even if they'd like to take their money and the companies big profits elsewhere.

And what, exactly, may I ask, have you done to protest the costs and profits so far?  What interviews have you done?  What protests have you led?   

[cariad]

Thank you, jbeany. I agree entirely. This sanctimonious attitude from newbies wanting to tell us that they know what's right for every single member here is working my last nerve.

Well-stated, and on no sleep. Quite amazing. Applause to you.

[MooseMom]

I wrote to President Obama.  I believe in going to the top!

[jbeany]

Wouldn't that be Michelle, then?   

[MooseMom]

Wouldn't that be Michelle, then?   

Naw...Barack.  What's more important...my kidneys or the budget deficit?  Actually, my kidneys may be an easier problem to solve.

[MooseMom]

Stay at it and allow them to continue to profit off your suffering.  B**ching and whining on a blog ain't gonna change a thing.  And don't say, "we have no other choice."  Your other choice is to become squeaky wheels and go to the media, state networks - whatever it takes - and DEMAND good care!

PatDown, what have you done yourself that has changed the corporate culture of dialysis in the US?  Do you have some particular strategies in mind that you have used to change the way things are done?  How do you define "good care"?  What exactly would you like to see changed, and how do you think we should go about effecting/lobbying for that change?  Do we target the big dialysis providers, or do we target the CMS/Congress?  Or, should we target private insurance companies and ask them to immediately remove all policy caps so that the 30 month MSP can be extended?

Who do you think would be most receptive to hearing the squeaks in our wheels?  Where do you suggest we start?

[PatDowns]

Thanks for further proving my point, JB.  Counting on one hand out of 100s of thousands of patients on dialysis.  Our group of patients is the least vocal, most prone to victimization that I have ever come across.

As far as HemoDoc, he's a narcissist whose only asset is eloquent writing.  When push comes to shove, he's afraid of taking on those who actually could make a difference or help with our cause.  His MO is to scare and bully patients who choose incenter (instead of trying to REALISTICALLY make the experience better).  Guess what?  Not everyone wishes to revolve their whole life around everyday nocturnal or NxStage.  There's more to treatment than statistics.

Ya know, Patdowns, there are people on here who are active, vocal participants in the process.  Search Bill Peckham's posts and check out his website.  He's testified before Congress, if I remember correctly.  There was someone on here pushing for legislation to raise the bar for dialysis tech training (Plugger?  Sorry, no sleep = no memory.)  Hemodoc regularly contacts the media and is involved in trying to change things.  Darthvader is a regular protester, frequently appears on TV interviews, and raises funds.  Karol, Sluff, KitKat, Rerun, Epofriend, among others put time and effort into moderating this board and keeping an active website running smoothly so that we can network and help each other and share information with the over 5000 members here at IHD.  A tally of people who have participated in NKF fundraising walks would take far too long to list.  Many of us follow the links the activist members post on here, and add our voices to the messages being sent to Congress, either by letter, e-mail, voting, and doing what we can in our local community to change the situation for people near us.

But not everyone is capable of that.  Some of our members on here are barely keeping our heads above water just trying to deal with our health issues, our finances, and our family obligations.  So I take offense at your tone when you tell us we all need to stop "bitching and whining on a blog."  It's not a blog, it's a support group, and we're all supporting each other and ourselves as best we can.

And yes, the reality is, not everyone has access to a different clinic even if they'd like to take their money and the companies big profits elsewhere.

And what, exactly, may I ask, have you done to protest the costs and profits so far?  What interviews have you done?  What protests have you led?

[cattlekid]

Here's a good question?  What constitutes quality care?  I'm a newbie who has only been incenter 2 months.  I am pursuing a transplant and I also don't want to deal with dialysis at home.  I want to be able to go to the center, get my dialysis and leave and not think about it until the next treatment.  I don't want a houseful of equipment or supplies.  So incenter is the way to go.  I'd love to know what I should look out for so that I can report it.  I am as vocal as the next person, but in this situation I don't know what I should be worried about and what would just make me a special snowflake.

[PatDowns]

Stay at it and allow them to continue to profit off your suffering.  B**ching and whining on a blog ain't gonna change a thing.  And don't say, "we have no other choice."  Your other choice is to become squeaky wheels and go to the media, state networks - whatever it takes - and DEMAND good care!

PatDown, what have you done yourself that has changed the corporate culture of dialysis in the US?  Do you have some particular strategies in mind that you have used to change the way things are done?  How do you define "good care"?  What exactly would you like to see changed, and how do you think we should go about effecting/lobbying for that change?  Do we target the big dialysis providers, or do we target the CMS/Congress?  Or, should we target private insurance companies and ask them to immediately remove all policy caps so that the 30 month MSP can be extended?

Who do you think would be most receptive to hearing the squeaks in our wheels?  Where do you suggest we start?

I propose MASSIVE REBELLION from patients.  Seriously.  Patients all around the country should hold a planned, one day boycott out in front of their dialysis facilities.  Get family members and friends to join in.  Pass the word on all renal related blogs and internet sites, facebook, twitter, NAACP (in major urban areas as well as the South, blacks make up a vastly disproportionate number of patients), all resources.  Make sure major media outlets, national and local level know what is taking place.  Have OUR set of talking points.

[MooseMom]

PatDowns, I think you do have a point in that the voice of dialysis patients is particularly hard to hear.  I don't know why that is.  I don't know if part of the problem is that the majority of dialysis patients in the US are also elderly and/or particularly ill.  Since renal failure affects the entire body, finding dialysis patients who have the energy to advocate is not easy.  Breast cancer is very high profile, but a lot of these patients are cured and with their newly found energy, they are particularly effective in self-advocacy.  The same is not true with dialysis patients; this does seem to be a particularly vulnerable and silent population.

My local hospital sends out a monthly magazine, and at the back, there is a list of advocacy/support groups for all kinds of problems; addictions, grief, Huntington's, cancer, new maternity, autism...but NOTHING about renal causes.  No support groups, no information groups, NADA.  I think this is indicative of the problem.  With renal problems skyrocketing along with diabetes, I don't understand why there is not a more concerted effort to at least educate people about renal disease.

I know that Hemodoc realizes that not everyone is a candidate for NxStage or home hemo, but those are resources that should be put to more and better use so that people who are not able to take advantage of those modalities can have better access to better services inclinic.  The more people you can get on home dialysis, the more chairs and resources will be available for those still inclinic.  Better service for ANY dialysis patient will translate into better service for ALL renal patients if we play our cards right.

Being forced to stay incenter just because your neph or clinic can't be arsed to train you to dialyze at home is as fundamentally wrong as giving poor care to any incenter patient and forcing HIM to endure disability.

We are all very interested in improving dialysis, no matter the modality or the location, for all patients, but working against the financial interests of LDOs, Medicare, the American Taxpayer and private insurance companies is no small task for a population that is already overwhelmed with the severity of their disease.  But if you have some tried and true strategies in mind, I do hope you will share them.  What have you found that has worked to make your own dialysis experience measureably better?  Are these strategies that most of us will be able to follow?  Any advice you have would be truly appreciated.

[MooseMom]

Here's a good question?  What constitutes quality care?  I'm a newbie who has only been incenter 2 months.  I am pursuing a transplant and I also don't want to deal with dialysis at home.  I want to be able to go to the center, get my dialysis and leave and not think about it until the next treatment.  I don't want a houseful of equipment or supplies.  So incenter is the way to go.  I'd love to know what I should look out for so that I can report it.  I am as vocal as the next person, but in this situation I don't know what I should be worried about and what would just make me a special snowflake.

Look out for infection rates because you will not be able to be transplanted if you have an active infection.  Infection rates have gone down just about everywhere BUT dialysis clinics.

Make sure your body isn't subjected to "crashing" and to quick/violent removal of fluid as this can cause enlargement of your left ventricle; you want to protect your heart so that it will withstand tranplant surgery.

[MooseMom]

I propose MASSIVE REBELLION from patients.  Seriously.  Patients all around the country should hold a planned, one day boycott out in front of their dialysis facilities.  Get family members and friends to join in.  Pass the word on all renal related blogs and internet sites, facebook, twitter, NAACP (in major urban areas as well as the South, blacks make up a vastly disproportionate number of patients), all resources.  Make sure major media outlets, national and local level know what is taking place.  Have OUR set of talking points.

But how is that going to address the fundamental problem, which is "who pays, and how much?"  Dialysis is soooo expensive.  What exactly are "our talking points"?

[PatDowns]

Here's a good question?  What constitutes quality care?  I'm a newbie who has only been incenter 2 months.  I am pursuing a transplant and I also don't want to deal with dialysis at home.  I want to be able to go to the center, get my dialysis and leave and not think about it until the next treatment.  I don't want a houseful of equipment or supplies.  So incenter is the way to go.  I'd love to know what I should look out for so that I can report it.  I am as vocal as the next person, but in this situation I don't know what I should be worried about and what would just make me a special snowflake.

That's a VERY GOOD question, CK! 

First of all, Hemodoc and others on here are correct in their assertion that more dialysis is best.  I mean, who can argue that point when working kidneys do the job 24/7/365?  That said, it is up to the individual to balance longer treatment/inconvenience (BTW, hemodoc, et al I knew many home hemo patients back in the 1970s when it was first thought I would be going into esrd. NONE ran more than 5 hours) to living a normal life as possible;  either while waiting for a transplant or choosing to stay on dialysis.

What is the minimum amount of time a person should run?  From my 18 year experience as an in center patient and patient advocate, 4-4 1/2 hours is adequate - using "adequate" as a positive in stead of a negative as Hemodoc, et al do - if there are no uncontrollable co-morbidities to consider.  Dialysate flow of 700 ml/min and blood pump speed of 375 ml/min should be considered. 

First thing - how well are you being dialyzed in center?  While the Hemodialysis Product (HDP) is the gauge for longer time hemodialysis, single pool KT/V  and urea reduction rate (URR) - please Google for definitions if not familiar with the terms - are still the standards for conventional, in center dialysis treatment adequacy.  My nephrologist likes to see my spKT/V stay above 2.1 and URR at 78% or higher.  I can accomplish both goals with running 4 hours.  I also feel well after dialysis and to do most activities on non treatment days.  To me, that's the best indicator of good dialysis.  KT/V and URR are shown on your monthly blood work.

Listen to your body and learn how you can mange with the renal diet.

As for what to look for in your clinic:

Moosemom is correct - infection rates are horrible in dialysis units.  Pay close attention to how often the floor staff wash their hands - not just using Purell or other hand sanitizer. Do they wear gloves when setting up/tearing down the machine and doing ANY medical procedure especially cannulation?  Do they CHANGE gloves between patients?  How well are the patient stations (machines and chairs) cleaned between patients?  Does staff open the chairs up to get in between side arms/cushions?  Do they just use one cloth to clean both the machine and chair - especially with the chair getting cleaned after the bottom of the machine?  Do they rinse out the saline over flow bucket with a bleached rag and water between patients?  Do they clean the dialysate lines from the hanson connections all the way down?

To keep this from becoming an issue with me, I do in center selfcare, including cleaning down my station and setting up the machine.  Will your nephrologist sign off on you doing the same?

How overworked is the floor staff?  Standard should be 4 patients to 1 patient tech / 1 LPN for every 8 patients / 1 RN for every 10 patients (not necessarily on the floor, but in the building).  Does the center experience high floor staff (mainly tech) turnover?  How much experience does the floor staff have in dialysis?
Do you watch to make sure your machine is set correctly for your treatment needs?  Fluid removal, dialysis treatment time, heparin infusion rate, pump speed, dialysate flow, even that the correct dialyzer is used?  Most dialysis units use a standard 2.0 Calcium/2.0 Potassium bath.  Do you know what your nephrologist has prescribed for you?  If different, does the staff hook up a jug of bath made to your prescription?

Do you self cannulate?  Unless your graft/fistula is placed in a hard to get to location in your dominate arm, then you should start sticking yourself.  If you have a fistula, the buttonhole technique is the best way to go.  After a short period of time, you begin to use blunt end needles that inflict minimal pain.

Look around, is the dialysis unit kept clean?  Problems with bugs?

There are other things to look for in a clinic including availability of social worker and dietitian services, and how well staff actually tries to help patients become educated about their illness and treatment.  While government regs stipulate monthly education, the facilities interpret that as to giving everyone a handout.

"I want to be able to go to the center, get my dialysis and leave and not think about it until the next treatment..."  - that's also a choice if you are willing to accept the possible consequences.  Bottom line, there is no easy choice.  To do well in center, you need to take/demand, if necessary, responsibility and control of your treatment.   Basically, it's the same as doing it at home, without having it all in the home!   Yes, that's asking a lot, but your health is as stake. 

Even though you are waiting for a transplant, it is not a cure for ESRD and unfortunately, no guarantee that you will not be back on dialysis.  So learn all you can.

[Henry P Snicklesnorter]

.

[Genlando]

Moosemom is correct - infection rates are horrible in dialysis units.  Pay close attention to how often the floor staff wash their hands - not just using Purell or other hand sanitizer. Do they wear gloves when setting up/tearing down the machine and doing ANY medical procedure especially cannulation?  Do they CHANGE gloves between patients?  How well are the patient stations (machines and chairs) cleaned between patients?  Does staff open the chairs up to get in between side arms/cushions?  Do they just use one cloth to clean both the machine and chair - especially with the chair getting cleaned after the bottom of the machine?  Do they rinse out the saline over flow bucket with a bleached rag and water between patients?  Do they clean the dialysate lines from the hanson connections all the way down?

To keep this from becoming an issue with me, I do in center selfcare, including cleaning down my station and setting up the machine.  Will your nephrologist sign off on you doing the same?
"I want to be able to go to the center, get my dialysis and leave and not think about it until the next treatment..."  - that's also a choice if you are willing to accept the possible consequences.  Bottom line, there is no easy choice.  To do well in center, you need to take/demand, if necessary, responsibility and control of your treatment.   Basically, it's the same as doing it at home, without having it all in the home!   Yes, that's asking a lot, but your health is as stake. 

I've only been on D for a year, but I totally agree that each patient should take responsibility for his/her care.  I'm not afraid to dress down people for inadequate care or even bad manners.  And unlike a lot of people, I know how to properly complain. 

For example, several months ago, I had voiced my desire to start home HD (NxStage) to the Center Director.  She ignored my repeated requests.  I was patient, but it became obvious that she wasn't going to follow up on my request.  So one day, I got a phone call from  an RN at Fresenius headquarters.  She was with the group that did the "Right-Start" training when I first started dialysis.  I knew that she could raise holy hell if something wasn't right at my center.

I explained to this nurse that for some reason, my center director was ignoring my request to start my NxStage training.  Furthermore, I told her that I was concerned about my longterm health at the center, because 4 patients had died during the Christmas/New Year holidays alone.  She promised to follow up on this quickly.  That was a Friday night. 

The following Tuesday, the center director pulled me into a conference room with a bunch of Fresenius employees.  She started off by apologizing for not following up on my request in a timely manner.  She then told me that they would start my NxStage training shortly.  The next week, the Technical Manager and trainers inspected my house, and they told me that I would be starting training by the end of this month.  Amazing what proper complaining can do!

I would definitely prefer to do my dialysis at a center and forget about it, but frankly, I don't trust the people at my center.  My Neph. has already told me that they wouldn't allow me to do "self-service" dialysis in the center.  Although they allow me stick myself, I have to wait for a nurse to push Heparin, and a Fresenius employee has to put me on the machine.  I can't imagine dealing with the lazy and impolite employees at my center for the rest of my life.  My run time is supposed to start at 10 AM on Tu-Th-Sa's but usually, I don't get on the machine until 12 PM.  I know that the NxStage is going to take up a lot of my time at home, but at least it'll be on MY schedule.  Plus, I'm sick and tired of suffering through 3 days a week of what I call "Dialysis by McDonald's."

[okarol]

Hey PatDowns,
What woke you up?  Glad to see how far you've come since your introduction!
Every chance I get I ask our representatives why we are "building mansions with Medicare." They say they are aware of the obscene payroll's of the dialysis companies, but it's a free market and dialysis is not regulated.
You no doubt have seen:
"Salary info for dialysis CEO's" http://ihatedialysis.com/forum/index.php?topic=20389.0 and
"Davita Inc. (DVA) Chairman & Chief Exec. Officer Kent J Thiry sells 42,524 Shares" http://ihatedialysis.com/forum/index.php?topic=22286.0
My daughter's dialysis clinic had 2 RN's for 54 chairs, and about 30% of the tech's who were trainees - paying for their education while practicing on patients! According to the Propublica's info I was able to ascertain that the clinic still has not been inspected sine 2001 - yes 01!!!
And speaking of Propublica's investigative articles - that was due to many people, including patients and caregivers who are members here, sharing info and collectively working to expose the problems: "ProPublica Report Slams Dialysis Centers" http://ihatedialysis.com/forum/index.php?topic=21048.0
It's a mess, insurance companies and Medicare and dialysis providers - all making money (and don't get me started on UNOS, and how they spend their billion $$) yet, when it comes to transplants, the living donors, who risk their lives, have to DONATE their organs!!
I'll bet in your many years of dialysis you've seen it all. Stick around, you might learn something here too.

[MooseMom]

PatDowns, I don't think anyone really disagrees with you.  I would love to see the benefits of home dialysis translated into the clinic environment.  I am not sure I particularly want to bring dialysis into my home; I like the idea of having my treatments at my clinic that is literally 2 minutes away and then coming home and forgetting about it.  But the advantages of more frequent dialysis in a clean, friendly, comfortable and even entertaining environment, overlooked by someone who has only my wellbeing as their highest priority, just does not seem to be available in most clinics, so if I want that sort of treatment, I can get it only at home.  That's fine for me, but what about all of the other patients who just cannot do home dialysis?

And yes, it IS up to the individual patient to decide just how they want to receive their treatment, but too many patients are not educated in the pros and cons of all modalities.  Who should be responsible for their education?  What do you do with those who may not have family who are that interested in advocating for them or who don't have internet access?  Why should patients HAVE to be educated at all?  I mean, shouldn't nephs and clinic staff be trusted to treat their patients with professionalism and compassion?

PS:  Hemodoc certainly doesn't need me to either defend him or to interpret his postings, but he does not "bully" any patient who choses incenter over home dialysis.  His goal is to make sure that every patient who is either facing dialysis or will do so in the future has access to all information about the pros and cons of each modality, ie, informed consent.  His ultimate goal, just like yours, is to make sure that all patients get the dialysis they need in order to lead they lives they want to lead.  It doesn't matter whether that good care comes from a clinic or from a home environment; all that matters is that patients get the opportunity to get good anemia treatment, good bp maintenance, good phosphate clearance and that the patient feels well.  Dialysis should not in and of itself disable the patient.  Unfortunately, for most dialyzors, that means getting dialysis at home.  Shouldn't be that way, but how many incenter patients get much choice in how frequently they get dialysis?  Do you really think that a national day of protest is really going to make all of the various powers that be say, "Of course we will allow our patients to come into clinic and dialyze when they want, how they want and for however long they want!"  I don't think so.

Anyway, I don't think you should disparage anyone who is advocating for better treatment of dialysis patients, whether they be at home or in clinic.  At least Hemodoc practices what he preaches.  Anyone who makes the effort to educate renal patients is OK in my book.  I don't think you and he are in disagreement about anything fundamental to this discussion.

You're right...patients do need to be vigilant and do need to be self-advocates, but I resent the fact that they HAVE to do these things.  This shouldn't even be an issue.

[rsudock]

I wrote to President Obama.  I believe in going to the top!

    Oh Moosey you crack me up!!!

Hey lay off on Hemodoc...he is always putting out good info for all!!!

Come on we are all in the same boat let's not cut anyone's throat and throw them overboard ok?!

[Bill Peckham]

PatDowns you left luck off your list of how to thrive on incenter D.

Why are there relatively few people who engage in advocacy? um because they feel sick?

My go to example of patient apathy is the story of the Kidney Expo. This was an event NW Kidney Centers produced, it's goal was that 15% of NKC patients would attend i.e. 200 current NKC dialyzors (home or incenter) - it was all my idea because I was tired of seeing the same two dozen people at NKC patient education events (these were yearly half day events at a hotel with speakers and a meal). The Expo's theme was Knowledge equals Power. I wanted NKC patients and their families to understand the many things one has to do to accommodate needing dialysis and I wanted family members, blood relatives of dialyzors, to go through a screening for CKD.

I proposed having an Expo. Each booth would present one aspect of CKD and/or dialysis care. There would be 70 or so booths. 1/3 vendors, industry folk, 1/3 local community partners and 1/3 NKC produced booths (different departments proposed booths and then pulled them together in science fair fashion, to talk about travel or pharmacy or home dialysis, etc). The idea being you, the dialyzor, would walk through the exhibits with your family member and stop at booths and learn something about dealing with CKD.

At the Expo NKC managed an elaborate CKD screening area that checked BP, BMI, and did the test for diabetes (I'm forgetting the name but involves a finger prick) and a urinalysis to check for protein in the urine, so an elaborate and invasive process that ended with a one on one consult with an actual nephrologist (who was there volunteering their time on a Saturday) who could suggest how to follow up on any sketchy results.

There were also presentations and food and a kids area with one of those bouncy things. I'm probably forgetting stuff, there was a lot going on.

Then to get people in the door I arranged the donation of the football stadium's club level - we just had to pay the clean up fee ~$500 - through a contact that I did some side work for, so a nice venue a place a lot of people hadn't been. Then I lined up donors who in the event donated, I think it was $27 to NKC for every person who attended. This meant if you and three family members (any age) came to the Saturday Expo, your attendance would trigger an over $100 donation to support the not for profit NKC. Just by attending. And we had donated door prizes - good ones like iPods to give away. There was five dollar parking (usually it was $12 to park near the stadium). We promoted it in every way we could think of, I'd say we went all out.

So with all that how many of the current NKC patients (a total census of about 1,300) attended? 118. Which was an improvement but not the goal. Overall we had over 1,000 attendees, with about 120 going through screening, a good number of family members who learned a thing or two, but only half the patients who were are real target. We tried over the next two years to tweak it, try other approaches but could never get more than 120 or so dialyzors to attend.

So apathy is a problem among dialyzors. That's not news but to come on here of all places to rant about apathy is deeply misguided. These are the people who are engaging in their care. I really see no point for your scorn, none of this is easy. I am having trouble seeing the point you are trying to make Pat, what is you point? Other than trying to set an example what exactly have you done to engage you fellow incenter?

Your initial post was that high equity prices are a result of patients not engaging in their care. That makes no sense. You say that writing blogs (and I assume posting on IHD) is not going help the cause. Again that makes no sense and does not reflect my experience at all. Later in the thread comes your disparagement of Peter which seems to be driven from your own defensiveness and suggest that this whole post was triggered by that defensiveness.

I really don't think you've made any sort of coherent point.

[MooseMom]

I don't really care how much profit these companies make; I just wish they'd spend that money in a way that served both their patients and their staff better.  Instead of giving all that money to shareholders and to CEOs, why don't they set up special academies that serve as teaching institutions to train dialysis nurses?  Use the money to pay for staff that will accomodate people who want to do nocturnal dialysis.  Expand home dialysis programs.  Build nicer clinics.  Don't scrimp on supplies and infection control protocols.

I think the dialysis landscape is a perfect microcosm of what America is becoming.  We like to promote ourselves as fiercely independent, but we rob dialysis patients of the opportunity to resume their lives and their work when we shove them into clinics that operate for corporations' profits.  We take people who WANT to be independent and who WANT to take responsibility over their own lives but then we tell them no, sorry, but you have to live according to our schedules and our rules.  So you end up with disabled and dependent people who are loathed by our society.  You know that's the truth.

We also like to promote ourselves as a compassionate people, yet we choose not to treat the ill with compassion because screw 'em, they cost too damn much.

This may be a bit off the wall, but look at how public sector workers in Wisconsin have been painted as living off the taxpayer.  Well, they sure got put in their place, right?  Their fellow citizens decided that they weren't going to pay for those workers' benefits anymore because dayum, that's just not fair that they're getting something I'm not (what that is, I'm not sure, but it sure must be something because that's what the pundits are telling us!).  So at what point do you think that the American taxpayer is going to start thinking that dialysis patients on Medicare are getting special treatment and that's just not fair!  Do you think we will get BETTER services, better treatment, more compassion?  Do you think the American taxpayer is going to care after a renal patients' national day of protest?  All they are going to see is one set of people wanting more money spent on them, money that comes from taxpayers' pockets.  Flippin' good luck with that.

Rant over, but probably not for long.

[jbeany]

Thanks for further proving my point, JB.  Counting on one hand out of 100s of thousands of patients on dialysis.  Our group of patients is the least vocal, most prone to victimization that I have ever come across.

No, Pat - what happened is you completely missed my point.  You're expecting advocacy not just for themselves, but for everyone, from people who are having a hard time getting out of bed in the morning. 

I spent months at a time where my definition of a good day was one where I was strong enough to make it to the bathroom before I threw up, even if I was so dizzy I had to crawl.  At one point pre-D, my hemoglobin was 6 for several months before they finally found out what was wrong.  It took me 45 minutes to make it up a flight of steps and I could fall asleep sitting up in an uncomfortable chair if the person I was talking to turned away for a couple of minutes.  I'm hardly the only one on here with those kinds of symptoms - and you're expecting us to be politically active at the same time?

Plus, what's the percentage on how many dialysis patients are actually young?  Hemodoc just had it one of his posts - 24,000 out of the huge total of D patients.  So the vast majority are at an age when they would have retired and started taking it easy because they were older and less active in the first place.  So you're looking for full steam advocacy from patients who wouldn't have the energy even if their kidneys wouldn't have failed. 

We are fighting for advocacy on this board - we're advocating that every member who shows up here learn as much as they can to help themselves.  How many of them didn't even know about NxStage before they read about it on this site?  I didn't, and I was instrumental, along with 2 or 3 other patients at my center, at pushing for it.  I was the first patient they ever trained at my center.  If I hadn't logged on here and read about it, I would have fumbled along with the inadequate info from the docs and center staff - and I had a good center compared to most, since it was non-profit and in a relatively small town.

And seriously, a boycott?  That's certainly one way to lower company profits - by killing off the weakest of their patients.

[Zach]

What about organizations such as Lori Hartwell's Renal Support Network?
Are they not good advocates for those on dialysis?

[okarol]

What about organizations such as Lori Hartwell's Renal Support Network?
Are they not good advocates for those on dialysis?