NxStage User's Plight

Discussions for Patients, Family, and Friends HD For Patients
1

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.

2

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.

3

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

4

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?

5

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?

6

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

7

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.

8

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.

[QUOTE=Dori Schatell;16613]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.[/QUOTE]

thanks
Bob O"Brien

9

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

10

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

11

Anna, please email me. If you don’t have the address, just contact Bill.

Anna, I’m sorry if your request for the group didn’t go through. Is it possible you weren’t on NxStage at the time? That’s the only reason for one being denied.

It’s been requested that you join pronto. See the link below.

You’re not dialyzing alone. We all our your partners.

12

Thanks again Rich for the sentiment. I was just starting my training on NxStage when I tried to join, (which I also stated in my request) I was asked to supply all of my personal information which I complied with, and then I was rejected.

13

Please, please resubmit – like right now!!!

14

I would be very interested to know the specific citation in the State of New York that bans selfdialysis. I would like to see the actual language and at what level the language is being applied e.g. legislative law, administrative rule, state survey interpretation. If anyone can pass along the specifics I would be much obliged. I would love to see a link.

I am highly distressed by the attitude that one must, MUST, have someone monitoring the treatment other than ones self. Let alone the idea that one must have a trained caregiver present. I agree with Professor Agar that caregivers are often a barrier to successful home hemo over the long term. It is far better to directly engage the dialyzor. If it is good enough for Oz, it is good enough for me and it should be good enough for the people of NY.

Dr. Hull has posted here in the past; word on the street has it that NxStage is more ambivalent then their materials would suggest and may have even made the same journey as MEI to the point where they are ready to admit including the language requiring a trained helper in their 510K was a mistake and one that will be hard to fix. Now would be a good time for NxStage to make a statement on the question of selfdialysis.

15

Hi Folks

The perfect set up… Two people both on dialysis ,both in the same state. Both on home dialysis, things so far great. Just like Anna said , Her life was on drive. Anna had done everything right. Opps her center changes, not her state, not her tx’s ,just her center. Anna’s right in that each person has to be fit or if they themselves are not fit to handle tx’s alone then have someone nearby is,and will be there to help. This is a CMS issue, not state. Is the state of NY paying the bill?

So Ralph , in a center that looks and says we can get fix this by home monitoring. We had a possible problem but we care about not just the phyiscal wellness, but the mental wellness of not just the person on dialysis. But also of his wife. All in the same state. In a time when there are people who are working to take away from other people they feel should be able to fend and pay for themselves, the last thing we need is a state takeing rights from the folks who need more protecting.

Right now I’m waiting on to hear back from someone on my complaint on job discrimination. I contacted my state rep who told me to contact my rep in DC,and file with EEOC which I did right away. When I went for the job phyiscal, the DR just keep going on about me on dialysis.( Dr seeing a bus going off a bridge in flames filled with people and landing on another bus oh no) And the DR said that I needed to get letters or notes, something on paper from all my DR’s stateing I was able to drive a paratransit bus. Which I did, just to get a two sentence letter from the company saying I failed the phyiscal. When I called to ask what part of the test I had failed I got no reply.

Dr John had posted on the web chats, and that we should try and get more into them. And he was right, but the web chats for some of us(me) are a very new thing. And as some of you know my spelling isn’t up there with the great writers. Just like Bill said this very alarming… I will send off an email to one or both of my state rep in DC who I think are on the kidney commitee( Joe Pitts, and Phil English ?) I will check right after I post this.

Pat

Are the ones who keep a eye on Ralph, from the center itself? And do you have to still fill out flow sheets?

[QUOTE=Pat Colongione;16615]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[/QUOTE]

thanks
Bob O"Brien

16

Bob,
Yes I still fill out part of the flow sheets. The observers who are at our Saratoga Center fill in the rest.
I fill in Weight, BP, Temp, Hepering, cartridge, cycler # etc. But I just do this at night right after we are on and then call the center with the info. They verify the Litres and FF and BPS and how much I will take off Ralph. They are monitoring and writing down everything that the Short Daily people need to keep track of.
In the morining I call in with BP,Temp and readings off the machine. Along with weight and time we stopped. I sleep all night unless there is an alarm. If we do not answer the alarm with in 1 minute the phone rings. If Ralph has to go to the bathroom during the night I call them while I am starting to get him off so they know what is going on. Otherwise the phone is ringing to find out what is going on. If we do not answer the phone they call our local fire dept/911 to send someone.
If they loose power or the internet system goes down we are called and told to get off. Which we do.This does not happen very often. Like maybe once a year.
It truly is a great system.
The internet is truly a great system.
Does this answer your question?
Pat

17

Hi Folks
Hi Pat

Yes , I like the idea of the basic set up. It just seems odd that they (center) can not tell all that over internet. When I had issue with my machine I had called nxstage and they were telling me what #'s I had put into the machine.

Thanks

bob obrien

18

When I give them the numbers they verify what I put into the machine.
The BP and weight and tempreture are something different and have to be told to them.
Pat

19

Bill,
I contacted our clinic head and this is what he said.

I think it is in CMS Conditions for
Coverage and/or NYSDOH Accreditation restrictions that there must be
either a ‘staff assisted’ or trained assist to help a patient dialyze at
home. We had to submit and display how we can ‘remotely staff assist’
home patients to dialyze safely. There were many other elements we had
to follow, log, educate, etc to comply with NYSDOH rules on this before
we started back in 1998.
Does this help?
Pat

OTE=Bill Peckham;16622]I would be very interested to know the specific citation in the State of New York that bans selfdialysis. I would like to see the actual language and at what level the language is being applied e.g. legislative law, administrative rule, state survey interpretation. If anyone can pass along the specifics I would be much obliged. I would love to see a link.

I am highly distressed by the attitude that one must, MUST, have someone monitoring the treatment other than ones self. Let alone the idea that one must have a trained caregiver present. I agree with Professor Agar that caregivers are often a barrier to successful home hemo over the long term. It is far better to directly engage the dialyzor. If it is good enough for Oz, it is good enough for me and it should be good enough for the people of NY.

Dr. Hull has posted here in the past; word on the street has it that NxStage is more ambivalent then their materials would suggest and may have even made the same journey as MEI to the point where they are ready to admit including the language requiring a trained helper in their 510K was a mistake and one that will be hard to fix. Now would be a good time for NxStage to make a statement on the question of selfdialysis.[/QUOTE]

20

It’s great that Anna found a new center that will allow her to continue with her home dialysis with NxStage. I applaud everybody that came to her defense and helped her with this situation. But who’s next? It seems that many centers can act arbitrarily. In the case of DaVita with over 100000 dialyzors, they can afford to kick out some from their patient roster and it won’t affect them at all, but what about the individuals affected. Never have been in a DaVita center, I don’t have the personal experience to know how they operate except for the anecdotal things I read which has been very negative at times. However, I have been at an FMC and do have the experience at one center and it wasn’t pretty. Oh, I forgot about the time they were getting an inspection and the two days before they cleaned up and polished the floors and even gave each of the dialyzors company T-shirts which they were asked to wear. You can imagine what I did with mine. As for me, the Anna campaign continues. As I said before, her struggle was our struggle.