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August 28, 2008


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Miz Flow

..I sit here and read this with my jaw on the ground. I'm speechless.....I just don't know what to say.

What are you going to do??

Anna Bennett

When I first heard that I was no longer being seen by my health care team and that my dialyzing at home was threatened, I was stunned, and my jaw dropped as well, then I was angry, then sad, now I am back to angry yet focused.

Even though I live alone, I am not alone. I have support in this, and the security of knowing that things will work out, it is just going to be a lot of work that I wasn't planning on.

Melissa Darnley

Anna this is incredible. It makes me so mad and I wish there was something I could do for you down here in Australia. There is nothing worse than just to be treated like you don't exist and are just another number when you know damn well what the best care is for you and what will ultimately keep you fit and well longer. Thinking of you. Will let Australian Dialysis Buddies know of your situation so we will all be thinking of you on the other side of the world.

Roberta Mikles, RN Patient Advocate

Anna: First, you are courageous to bring your situation forth as many are only too aware that the fear of retaliation is 'alive and well' in many facilities throughout the United States. What happened to you, should not happen to anyone, and I am sorry you have to experience such. As was stated in one government report, (2003) -unless information is brought to the public, often situations go unnoted by all, including our elected officials, who might not be aware of less than quality safe care conditions. Perhaps it would be interesting to learn, from obtaining a copy of the survey, why the facility closed? It is imperative, for quality of life, that those who can dialyze at home do so with support of providers.
Please keep updating us. Your courage will support others to also come forth with problems they are experiencing.
Roberta Mikles RN Health Care Patient Advocate

Rich Berkowitz

Anna, this is a total travesty of justice and a violation of your civil rights. Dialyzors should have the right to choose the modality best for them — no ands, if, or buts. Since you've chosen to make this public, why not call the ACLU and press your case with them. I know for a fact that NxStage does not require a partner — it's the clinic if anybody. I also know that Wellbound has a specific procedure for allowing dialyzors to treat alone. It seems that Davita does it to cover their own butts regardless of what's best for the patient.

It also seems that DaVita has dug itself a hole. Davita is one corporation — each center does not stand alone. Even if New York has certain requirements, Davita has a problem. The fact that you were allowed to dialyze at home with the approval of another Davita clinic in the same state not only sets precedence that Davita allows it, but also can put them in hot water in that they violated the law by allowing you to do HHD alone. It seems to me they have put themselves in a pickle.

It's time for we dialyzors to demand our rights. You go girl!

LeRoy Holmes Jr.

Go Get 'Em Anna! If it can happen to you, it can happen to any of us. Give 'em hell!

Prof John Agar

Dear Anna

I dont know what to say ... and that is (nearly) a first for me.

This is so sad. So very sad. That in what one hoped might be enlightening times, the dark persists. As you know, home dialyzors (to use a Bill Peckham term) have been dialysing here, alone, for 40 years.

It is so sad that fear ... fear of litigation, fear of the unknown, fear of being an unknowing, maybe even fear of a knowledgeable and capable dialysis patient (I am sorry to use the term 'patient' on Bill's site but old habits die hard) ... should be so prevalent still.

I dont know how to help you or how to change the misconceptions so many of my colleagues and our nurses still have about dialysis - yet I HAVE tried my best to do so in my own small way. Here, in Oz, we are not so unenlightened - and I am thankful for that (as are our patients ... there I go again, Bill). One day, hopefully, the US will catch up but, it is truly sad to see how far behind the rest of the world you are starting from.

But, like you, I despair at times like this. Dont give up though. I wont either. There are more than you know, out here, that actually DO understand.

John Agar

Roberta Mikles

Anna, I agree with John Agar. And,if there is anything that I can do to help, please do not hesitate to contact me. Hopefully, and we pray that this will be resolved so that the result is in your best interest that will support your quality of life. Although not everyone is a candidate for home, for various reasons, those that choose to do so should be able to without such obstacles. Roberta Mikles, Health Care Patient Advocates, RMiklesRN@aol.com

Alec Vachon

Anna, If I understand your post correctly:

(1) you dialyze at home with NxStage product;
(2) your clinic support was provided by a DaVita unit, which shut down on 8/15;
(3) DaVita made a referral to another DaVita unit which is not supporting your home dialysis solution; and
(4) You wish to continue home dialysis with NxStage product.

IMHO, you have a MEDICAL EMERGENCY, and should be screaming bloody blue murder to people who have responsibility to fix your situation. My suggestion is to compose a short e-mail with above four bullets (and link to posts here) plus a bullet that the situation constitutes a medical emergency. Add a catchy subject line ("HELP -- DaVita Drops Ball on My Home Dialysis"). E-mail to following individuals/enterprises WHO HAVE LEGAL AND/OR MORAL RESPONSIBILITY FOR FIXING THIS MESS (if you have problem with e-mail addresses, let me know):

Davita management (i.e., Kent Thiry)
NxStage management
ESRD Network of New York
Centers for Medicare and Medicaid Services (CMS) National Office
CMS Regional Office
Your Congressman
Your Senators

This list is not exhaustive (NY State or NYC Health Departments may be appropriate, etc.) but just a place to start. Keep banging away until someone fixes the problem. You should not accept in center as the solution. In addition, you might also add NKF and AAKP.

Alec Vachon

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