A Renal Care Center...fantasy

[dialysisadvocate]

Moosemom - email me directly - rmiklesrn@aol.com with what you would like to see --- I can compose a query to our hospital advocacy groups and see if anyone in your area would be interested in speaking/communicating with you -- worth a try? what have you got to lose --
Hey, my outspokenness regarding lack of safe care in many units puts me in a position where no one probably would want to give me dialysis one day ------ providers do not find me as one of their favorites as I speak the truth about alot of incenter care
opinons of roberta mikles www.qualitysafepatientcare.com

[Sue]

I completely agree with you MaryJoe, I am pre-dialysis and apart from a two session education program which was run by the renal team at a major hospital I feel as if any information I get is down to me. I have a great nephrologist and urologist but as far as other supports go... nothing!!

[Lillupie]

Im so angry. This is what I put on Facebook:

"NO OFFENSE TO PEOPLE, DONT READ IF YOU DONT LIKE IT. JUST MY RANT FOR THE DAY, FREE SPEECH
 Hey If I have cancer, there is sooo much research out there for me, and special treatment, and I can beat cancer, and people have. if you go on dialysis you will eventually die, there is NO beating it, no research being done. If you go to a dialysis center you will smell urine and feces because you are trapped in a chair and cannot get up and will poop on yourself, blood squirts out of people's exit sites. You are not allowed to eat or drink during this time or you might puke on yourself because your blood pressure drops sooo low. If I have cancer I can get to eat whatever I want to be strong. On dialysis you cant eat or drink anything but red meat, and its the most restricted diet (nothing that you normal people consider healthy). You can get, if you are lucky enough, im not, to get a transplant, and still die from that, and eventually from dialysis's complications you will die. THERE IS NO REMISSION FROM KIDNEY FAILURE. But whoo hoo I can breathe one more day. Think of this before you think what is worse. best of all, your precious tax dollars pay for it all, so watch your weight, diabetes, and blood pressure!"

Im sick to my head of not hearing anything about it. I think I am going to finish my 175 page book if only I can get home  hemo people to share their experiences so people can understand that home hemo is an option.

Lisa

[MooseMom]

  Lillupie.  I'm not even on dialysis yet, but I am nonetheless really pissed off.

I keep coming back in my mind to the facility referenced by Bill.  Why can Seattle have plans for a great renal facility but not the rest of us?

You should definitely write that book.

[dialysisadvocate]

Has anyone, just curious, read the DFRs (Dialysis Facility Reports) at www.propublica.org/dialysis for NorthWest Kidney Centers? I would be curious to see how they rated ...

I know when my father went to WA state to visit my sister we tried to get him into a NWKC but there were none in the area that he was visiting... we had heard that these were the best and that this provider did really care.

As I read about Davita being now part owner of NxStage, I just smile to myself. Prior to the QIP, our unit, for example -- never really focused on home dialysis,, as soon as the QIP started, WOW,, pictures of home dialysis all over the umit to the point of overkill...it is all about money and making money for the stockholders ---that is the bottom line - and when you have corporate level people making positive statements about care, then you read their surveys, you have to ask 'what is wrong iwth this picture? Don't these corporate people care that patients are not receiving day to day care that is in compliance wth policies/procedures and federal regulations.

opinions of Roberta Mikles  www.qualitysafepatientcare.com

[MooseMom]

I mailed my letter yesterday, so thanks to everyone for their ideas.  I included a copy of the press release from NWK centers.  What's funny is that just now, I've opened my mail box and have found a 2012 Summer Program Calendar from my local hospital in which is listed guest speakers on various topics along with classes that one can take.  Again, nothing for renal patients.  But I thought I'd share with y'all what IS available for cancer patients at the cancer care center (the one that already exists, not the new one they're planning).  Tell me if you would be interested in any of these classes/activities if they were offered to you, the renal patient:

1.  LivingWell Yoga

Yoga enhances wellbeing by relieving tension, increasing flexibility and improving balance and strength.  Participants in this weekly class enjoy gentle stretches, breathing exercises and conscious relaxation.  Open to all cancer survivors, caregivers and family members.

2.  LivingWell Fitness

This upbeat class takes you through a variety of fitness techniques, including cardiovascular routines and light weight training using fitness balls and bands.  Movements can be modified for all fitness levels.  Open to both men and women. 

3.  Look Good, Feel Better

In collaboration with The American Cancer Society, trained beauty professionals help female cancer patients cope with the side effects of chemotherapy and radiation (I guess men don't care what they look like?).  Learn makeup techniques, skin and nail care tips, as well as suggestions for wigs, turbans and scarves.  Each participant will receive complimentary cosmetics. 

4.  Healing Touch and Reiki Energy Healing

Healing Touch and Reiki are gentle, noninvasive energy healing systems that channel energy through the hands of a trained practitioner, which are placed on or above different parts of the client's fully-clothed body and support the body's own natural healing process.  the healing energy flows to wherever it is needed, promoting deep relaxation, well-being and inner calm.

5.  Culinary Comforts

Culinary comforts is a four week class that teaches healthful food preparations and is designed for people living with cancer and their caregivers.  Our instructors will prepare and serve the group one entree, one side dish and one dessert each class.  The health benefits of the ingredients are discussed so that recipes easily can be replicated at home.  Those attending all four sessions will receive a complimentary copy of "The Cancer Fighting Kitchen".



How many posts have we read/written about diet and exercise and stress reduction in the renal patient?  Do any of you get anything like these services at your clinic or neph's office?  I think quite a lot of us could benefit from some renal cooking classes or gentle exercise classes with other kidney patients.  And if you don't want any of this stuff, then you don't have to sign up, but it sure would be nice to have it offered.  Again, if they can do it in Seattle, then what not anywhere else?

[cattlekid]

MM, I'm not going to quote your whole post other than to say that this is exactly the type of thing that chafes my privates.  These are all classes that should be offered to ANYONE going through ANY type of chronic illness, not just cancer.  I would take advantage of all of them.   

Why cancer continues to get singled out for special treatment never ceases to amaze me.  Like I said before, is it because dialysis patients tend to be looked at as old and sick and dying anyhow?  My guess continues to be it's because these classes would cut into the precious profit margin of the LDOs.   

[MooseMom]

These are all classes that should be offered to ANYONE going through ANY type of chronic illness, not just cancer.  I would take advantage of all of them.   

You know, that's a really good point.  Maybe I shouldn't be carping about a renal care center, per se.  Maybe I should be pushing for a "chronic illness center".  Thanks for that thought.

[WishIKnew]

Oh, I really like the direction this is headed now.  Not pitting one illness (say cancer) against another but working together to create something better for all who suffer.  I noticed the American Cancer Society sponsored a class or two on your list.  Wonder if the National Kidney Foundation would do the same?

[amanda100wilson]

Dialysisadvocate, I did not know that NxStage is part of Davita?  Please can you send me your source.  Many thanks

[Zach]

http://www.marketwatch.com/story/nxstage-medical-davita-buys-7-stake-for-20-mln

Feb. 7, 2007, 5:30 p.m. EST

NxStage Medical: Davita buys 7% stake for $20 mln

DaVita Inc. (DVA) acquired a 7% stake in NxStage Medical Inc. (NXTM) as part of a multi-year collaboration agreement aimed at expanding the availability of home hemodialysis to patients in the U.S.

NxStage, Lawrence, Mass., said DaVita paid $20 million, or $10 a share, for the stake and also purchased all of NxStage's System One portable hemodialysis equipment currently in use for $5 million.

DaVita, Torrance, Calif., further agreed to purchase the majority of its future home hemodialysis equipment needs from NxStage.

NxStage closed Wednesday at $8.50, down 22 cents, or 2.5%.

[dialysisadvocate]

THis issue of reimbursement I can certanly understand, however, I have always been a strong proponent of the following:
A COMPANY PROVIDING DIALYSIS SERVICES CAN STILL GET THEIR PROFITS UP FOR THEIR TOP DOGS AND THEIR STOCKHOLDERS AND STILL PROVIDE QUALITY SAFE CARE ----THAT IS THE BOTTOM LINE  0f course, I have seen facilities cut suplies in many areas but as far as safe care, let's take a look at infection prevention --- I give California as an example -- the inspection reports, known as surveys, clearly show that nothing has truly changed with that which the state finds wrong when then enter a facility to inspect it... staff still do NOT wash their hands and follow facility policies -- so, my question is. what has this got to do with revenue-- As I observed staff in many units, the shortcuts taken to avoid correct practices are really not shortcuts... maybe something in staff's miinds say I dont have to do that, I wont, or my patient wont get an infection or maybe, just maybe they do NOT understand the rationale behind policies to protect patients..
opinions of Roberta Mikles  www.qualitysafepatientcare.com

[MooseMom]

I know we tend to demonize the LDOs, and maybe that is not always a fair assessment.  I know that DaVita has had a share of NxStage for some years now...is this a good thing or a bad thing?  What exactly does it mean for patients?  I've never been able to quite work that out.

[Whamo]

Anyone on Medicare should be writing their local politicians and urge them not to cut our benefits or cut our services.  Both parties seem willing to throw us under the bus if they can get away with it.  I think they're waiting until after the next election.  For sure, the Republicans will do it, and perhaps, the Democrats too.  It could get ugly.  AARP does a good job of reporting on the proposals at their website.