NxStage User's Plight

[Rich Berkowitz]

Anna Bennett, a dialyzor in NYC, who supposedly is getting treatment from Davita, just got dumped from nocturnal and actually home dialysis because she dialyzes alone. This is an absolute travesty as we all should have the right to treat with any modality we choose. As adults, we must be allowed to use our own judgement in term of what is best for our lives. If there was any example why home dialysis dialyzors must have an organization representing them, this is it. If you're not familiar with Anna's plight, go From the Sharp End of the Needle and read her posts. This should be mandatory reading for all dialyzors.

It's also the time for some direct action, whether that's a petition to Davita or Anna's NY representatives. Let's get our act together and support our sister in need.

[Rich Berkowitz]

Who's struggle is it, Anna's or ours?

This is a portion of a post I made on the NxStage_Users listserv. And there already has been a positive response.

Who knows how many people have requested home dialysis but have been denied.

In Anna’s case, I think it is a situation of pure ignorance and questionable breech of medical ethics for DaVita Columbia to arbitrarily force Anna back in-center. Without knowing all of the information I wonder if it was business as usual because they weren’t getting paid for the extra treatments. But this situation isn’t just about Anna — it’s about each and every one of us. Whether we have been dialyzing alone, as I have openly admitted to my center although my wife originally signed an agreement or others that have a real partner, life happens and so does death. At any time those with partners can lose them, either temporarily or permanently. Should we be forced to go back in-center because we are now alone? I don’t think so and I know most of us have sworn never to go back. So I really think Anna’s struggle is ours and we need to come to her assistance in some fashion.

We can do the regular thing of calling and petitioning and so forth. If I was in NYC I would march in front of the center. But thinking outside of the box, here’s one idea I came up with. The center said that Anna would have to go back in-center when her supplies ran out. I’m not sure how much she still has, but what if the other dialyzors in the NxStage community keep her supplied by shipping some of our own. I can easily order additional dialysate or SAKs without causing anybody’s eyes to rise. We can literally keep her supplied so she never runs out — let DaVita try to figure it out. Don’t laugh — I’m dead serious about it . I think we should try to mobilize as many other NxStage dialyzors as we can. This is the time for action.

[richard st amour]

I too read Ann’s story at Sharp End of the Needle and find it to be more than a travesty I find the whole situation to be a disgusting display of arrogance on the part of the provider. Purely a human rights violation with overtones of morale and ethical discrimination. Shame on these oath taking people ...and I do hope that Anna does go public to the max....keep us posted

[Dori Schatell]

Hi y'all,

I'm very distressed to hear about Anna's situation. When we first started Home Dialysis Central in 2004, our position was that anyone who had blood outside the body (i.e., doing HD) needed to have someone there.

But over the past 4 years, as we've realized that longer and/or more frequent treatments are different in terms of their symptom profile (and thus danger level) than standard in-center care--and that adults should be able to choose to take on some level of "risk" if need be to have a better quality of life (including the ability to work), we've changed our minds.

A number of folks here dialyze alone, and with reasonable precautions such as blood detectors, IMHO, it is safer to dialyze at home and get far superior dialysis than it is to dialyze in-center and get only 3-4 hours per treatment 3x/week--with a survival rate that, well, let's not go there.

It's tricky for DaVita, I'm sure, because the FDA has not approved any machine for self home dialysis. But once a device is on the market, an MD can prescribe it for any purpose, and that's how self home dialysis is done now. I wonder if a change of nephrologist might help Anna to stay at home?

[Beth Witten MSW ACSW]

There are other patients in the U.S. that are dialyzing alone. They know what they're doing -- both in knowing how to do all the steps of their dialysis including what to do in an emergency and they know that there is some risk involved and they've chosen to accept that risk to do dialysis at home and to get more dialysis than they'd get in a clinic.

One argument I'd have in support for no difference with NHHD doing it alone or with a partner is that the likelihood is that the partner will not be awake while the patient is doing dialysis so if anything bad happened while the partner is asleep, he/she wouldn't wake up anyway.

Is there any legal paperwork that could be drafted and she and her family could sign that explains the risks and absolves the clinic of any legal liability should the unforeseen happen?

Are they afraid the state survey agency will cite them for allowing a patient to dialyze alone? Can she call the state survey agency to ask if there is any regulation that requires an HHD patient to have a partner?

If the issue is that this doctor will not allow his/her patients to dialyze alone, are there any other doctors or providers within driving distance that allow patients to dialyze alone on NHHD?

[bobeleanor]

Hi Folks

I guess some on this board speak or read in a different language. Outside of my asking questions that were purely dialysis (blood ,pth,etc) one of things I thought I had been working to get across was the need for a nation wide set of do's and don't's. That's why this site is so important. The folks who run this and the folks who post here, we are the luckly ones. For any # of reasons we have all come home and brought with us many different experiences. I had to to get away from davita ,simplely due to do outside issues that were happening in my life. I did find a non profit center that was more what I had in mind as a medical center. But that hasn't stop me from looking for ways to help folks who are still ""in center" . And fighting or at least looking into how we who are on dialysis no matter what type can have have real rights.

I just in the last couple weeks had to file with EEOC , finding that no matter how hard I worked to get myself in shape and in a program that would let me do dialysis fully(nocturnal) and had gotten all the outsides issues cleared of my plate. One of things that has bother me in last yr? has been the flight that some of the best folks who are on dialysis have taken up their own web sites or blogs etc. It is not that anything is wrong with that, but we need to have a thread on this very real issue. When I started with davita's home I did home tx's on my own all the time. And davita was well aware of this, but as long as I did my tx's and showed up once a month things were fine. They only had issues when the other outside issues would prevent me from walking lock step in line with the leader.

I was thinking that this is why I had asked for a web with real legal people. I'm not sure of others than have had the hard time given that I was or from reading Jane has had even more issues. This site now has sections for care giversof people on dialysis why not one on legal issues.

But from the start of dialysis CMS and the insurance companies,should have had built in incentives that force all of the top people in dialysis to get people home asap. I know that some can not and have real reasons. But I'm also sure that a given # can do it but, dialysis has been made into a great money making machine. Why else would we have davita and fmc. These companies did not start for the kindness of people. They saw a golden goose that was ripe for the taken. This is not to say that all the people who work at these companies are bad or uncareing. But they had to make a call, do the right thing and fight for the rights of dialysis consumers or look the other way, or move on to a new center or get out of dialysis all together.That is the one thing that those who are not on dialysis have over those on dialysis. It is a very enpowering sense. And I think it can go to a persons head.

I started this before I had a chance to read all the posts that have been posted, since Rich first started this, this is my biggest issue I have with dialysis. This sense that a company thinks it can and as Rich post shows will carry out if we do not get real legal help. I know some folks don't like the idea of court and lawyers. But in the world in which we live this a very real issue and if davita gets away with this than it dooms all of Us

Thanks

Bob O"Brien

[Dori Schatell]

This site now has sections for care giversof people on dialysis why not one on legal issues.

Hi Bob,

Mostly we don't have a board for legal issues because attorneys tend to charge a minimum of $150/hour, and we don't know any who are willing to donate their time--nor can we afford to pay them to answer questions.

[bobeleanor]

Hi Folks

Hi Dori

I find it sad, that their are no people out there who would offer some time to help with legal matters. Even if it was someone from CMS who was willing and open minded to have a real web chat or at least post on a thread as often as they could on these questions and matters. Every group out there has people standing up for there rights. And I'm very happy to see people who care, stand and fighting for people with AIDS, Alz, The homeless etc. You get the picture. Are we on dialysis the only group that folks think we have to fight are own battles. I hope Anna's issues are just the fact that she is doing home tx alone.And that Anna has not skipped tx or misled folks from the start. When I started at both centers for Tx's the folks were well aware of the fact at the start at least I would be doing most tx's alone. In now doing nocturnal , my wife is in bed next to me and it is for more comforting to her than I had thought. I still would be happy to do tx on my own, I sometimes feel that it still hard on my wife, worrying that something might happen.

Hi Bob,

Mostly we don't have a board for legal issues because attorneys tend to charge a minimum of $150/hour, and we don't know any who are willing to donate their time--nor can we afford to pay them to answer questions.

thanks
Bob O"Brien

[Pat Colongione]

Hi all,
We live in New York State and it is the State of New York that says you CAN NOT Dialyse alone.
That is why our Rubin Center started the monitoring about 8 years ago.
We are on nocturnal and are monitored from 7:30pm to 7:00am 6 nights a week with 2 people on each night.
Pat

[ALBinNYC]

Well, hello all. Long-time lurker - first time poster.

First thank you all for your support. I never expected in my lifetime to be a "cause". My current situation is indeed polarizing, but there is a solution. I have found a center in NY State that is willing (preliminarily) to take me. Hopefully this will only be a short minor inconvenience, as I have been on the UNOS list since June 2005, and eventually (fingers crossed) I'll get a kidney.

The subject of solo dialysis has many pros and cons, and is a battle to be fought on an individual basis. Just as medicine should be practiced on an individual basis. Each person's situation needs to individually evaluated. Mine is an issue of education. Nephrologists and Dialysis units need to be better educated. Based on the events of the past few weeks, I have been forced to form some very solid opinions on the business of dialysis, and I am lucky that Bill Peckham has given me a forum in which I can be heard.

Personally, this has been a devastating turn of events, and being dumped did something to me that a chronic illness never could. My trust was violated. I was blindly living my life, happy at home, work and at play, and one day it was all over. I was a solo pariah, the attitude of each interaction that I had with DaVita Columbia (the new unit) was that I was an outlaw, and I needed to come in-center for my own good. My reaction was swift and vocal - I forced their hand, and I became the aggressor.

Every physical accomplishment that I have attained in the past 10 months was taken away. My work suffered, I became depressed, and I have never in my life felt so alone. And I took a very public stance on a very personal matter. What 42 year old woman wants to publicly announce that she has failed in the relationship department? (I am not single by choice - the unfortunate truth is that no one is lining up on my doorstep looking for a relationship). That just adds insult to injury.

And Rich, thanks for being so quick to raise the flag. It softens the disappointment that I felt last year when I was rejected when trying to join the NxStage User's group.

I am going home to London this week for a planned vacation that couldn't come at a better time - also a vacation that I could never take when I was in center. When I come back, I hope to spend some time at my new center, pass any exams that they require, and then I hope to be back home in my little apartment, back to my job, and back to a quiet life.

Thank you all again, your posts have been a great resource to me in the past and a great comfort to me in the present.

Best,

Anna Bennett