INCENTER DIALYSIS CARE --NEED SOME PT INPUT

[chattyKathy1959]

My time is 12:00 noon, but I never get hooked up till 12:45, this really infuriates me!  My pet peeves are   the chairs are so uncomfortable and the tvs are horrible! Most of the channels are fuzzy....I don't understand why my Davita center can't have nicer chairs and newer tvs? I believe they charge over 16,000 per week for dialysis, why can't they afford nicer amenities?? Oh well, just had to get this off my chest( permacath and all!) 

[sullidog]

the social worker would not grant my request because she didn't want me to leave, I'm guessing she's the one that has to get the ball rolling as far as the paperwork, etc.

[HILINE]

the social worker would not grant my request because she didn't want me to leave, I'm guessing she's the one that has to get the ball rolling as far as the paperwork, etc.

\

she see's you as money 

[cattlekid]

And that's where I would be going straight to your ESRD network for resolution.  Your SW should be working for you in whatever you need to facilitate a good outcome for yourself. 

I forsee the same with my center.  I plan on investigating switching centers after the first of the year so I can go on home hemo.  I've pretty much told everyone in the center the same.  When the day comes that I am ready to switch, if I get even one minute of resistance from my current center, I am contacting my ESRD network and raising holy hell.  Sure, they're going to miss my $2300 per week in income but it's not my problem.

the social worker would not grant my request because she didn't want me to leave, I'm guessing she's the one that has to get the ball rolling as far as the paperwork, etc.

\

she see's you as money 

[dialysisadvocate]

As I read through all your posts, I contiue to be frustrated and am only reminded that providers are not doing sensitivity training with their staff. It appears through these comments that there are alot of 'atitude' problems with staff... This is a result of staff being resentful and annoyed that how dare a patient/family/friend request safe care 

I do not recommend patients to contact the Network but suggest they file a complaint with the state agency. I have heard, from too many patients, that the Networks don't come through and that they (pt) have more problems. Some have told me that the NETWORKS go back to the unit and give the patients name. Further, the Network has no authority e.g. if you file a complaint with your state, the state does an investigation and they CAN write what is called a 'statement of deficiencies' This shows what the facility did not do that they were suppose to, then the facility must write a plan of how they will correct the problem. tHIS has more weight than the NETWORKS in my opinion..

For anyone in Ct, i HAVE received the inspection reports and will be posting to the website in a few weeks.

opinions of Roberta Mikles - Dialysis Patient Safety Advocate
www.qualitysafepatientcare.com

[cattlekid]

Oh, and over the last few days I thought of a couple more things that my center needs to work on. 

Decor:  the paint scheme is puke yellow and puke brown.  If I had to work there, I would be depressed in a week.  New paint in more soothing colors, please.

Parking:  there needs to be a designated parking area for transport vehicles.  I have been parked in by a transport vehicle more times than I care to count.  The transport vehicles pull right up to the front door and park, which is fine, but then those of us who are in the regular spots near the door can't get out. 

[The Lady]

I wish someone would invent more comfortable chairs. My legs and back usually feel like hell after 4 hours. Plus, I've read about Dialysis Chairs with built in heat! I am one of those people who start shaking and freezing practically the moment my blood starts being removed. I'd love a nice warm chair to sit in!!

Besides that, I have little to complain about. My center is pretty awesome compared to many!

[cattlekid]

Ask the staff at your center if the temperature on your machine can be turned up a little bit.  I had in-hospital dialysis a couple of weeks back and the tech gave me a tour of all of the functions of the machine.  One was that the temperature could be raised to prevent the cold feeling.  Not sure if the dr. has to prescribe the temp or if the temp can be raised by staff without it.

I wish someone would invent more comfortable chairs. My legs and back usually feel like hell after 4 hours. Plus, I've read about Dialysis Chairs with built in heat! I am one of those people who start shaking and freezing practically the moment my blood starts being removed. I'd love a nice warm chair to sit in!!

Besides that, I have little to complain about. My center is pretty awesome compared to many!

[CebuShan]

I still would like volunteers to be allowed in to give us manicures and mini-pedis.  And hot tea.  Just a thought.

       

Wow, Rerun I like that idea!   

I love my center.The staff is very nice and compassionate. They are very conscious of infection control. I did have to change centers for a few months and the SW got me in another very good one. THEY had the heated seats!! I too get very cold while on D. I started out with one blanket and I'm up to 3 plus a "slanket" (blanket with sleeves). My temp has to be low because otherwise, I get the most horrible cramps.

I do wish my center had internet. They just have TV but it is good cable. They also have let my husband come in and sit with me after I've been cannulated. They are great about calling him for me about 1/2 hr before I'm finished (That's how long it takes to get there from his work).

I also have a horrible fear of needles but they have been great about working with me to help me overcome my fear a little. (I don't think it will ever go away completely)

The one thing that they haven't done yet that I wish they would is teach us how to "Clamp, Cut & Run!"  I have a basic idea but I would like to know a bit more. I live in tornado country and there is no way they would be able to get 9 (max) of us off our machines if the sirens went off. I have asked them and will continue to ask them until they get tired of hearing it and just teach us all.

I really don't care one way or the other about the privacy curtains. We have all laughed about the "privacy policy"(HEPA, I think?) Unless they gave us all private rooms, pretty much NOTHING is private in a Dialysis center!   

[sullidog]

I think all centers should be required to use the crit line. Also with patients with no UF they have to be given back what the minimal setting on the machine removes, sometimes techs don't like to do this because the bp is fine, however when the patient goes home their bp will sometimes drop causing them to get lightheaded at home. I complained to a tech about this once and she said "Well I didn't remove anything, that's just dialysis."

[CebuShan]

I think all centers should be required to use the crit line. Also with patients with no UF they have to be given back what the minimal setting on the machine removes, sometimes techs don't like to do this because the bp is fine, however when the patient goes home their bp will sometimes drop causing them to get lightheaded at home. I complained to a tech about this once and she said "Well I didn't remove anything, that's just dialysis."

They always run me with the UF off but they do put back what they take off otherwise I cramp really bad. I have on occasion had light-headedness when I got home even putting the fluids back.
I feel I am lucky in a way, I still urinate. My neph described it like a tall glass of water that you keep adding to. It flows over the top but doesn't get down to the bottom. In other words: My kidneys still "function" they just don't filter. I do watch my fluids even though I don't retain fluid. I have to be careful with that, too. Last Summer, I was hospitalized for DEHYDRATION! I still laugh over that: An ESRD patient being hospitalized because they don't have enough fluid!

[CebuShan]

Sorry I posted before I finished my thought!

Sullidog, does the lightheadedness happen all the time? Did you talk to the nurse or your neph about it? Don't just accept that answer! If it is continuous, talk about it. If you are worried the Tech might get mad at you, phrase it as a question. That's what I do. "What is it during D that would cause me to get lightheaded? Is there something that I can do to prevent it?", etc.
Good Luck!

[Bren-tam]

Ask the staff at your center if the temperature on your machine can be turned up a little bit.  I had in-hospital dialysis a couple of weeks back and the tech gave me a tour of all of the functions of the machine.  One was that the temperature could be raised to prevent the cold feeling.  Not sure if the dr. has to prescribe the temp or if the temp can be raised by staff without it.

I wish someone would invent more comfortable chairs. My legs and back usually feel like hell after 4 hours. Plus, I've read about Dialysis Chairs with built in heat! I am one of those people who start shaking and freezing practically the moment my blood starts being removed. I'd love a nice warm chair to sit in!!

Besides that, I have little to complain about. My center is pretty awesome compared to many!

I was the same, after about an hour I was shivering even though I take 2 blankets and completely cover myself (the other patients call me the Eskimo) so the nurse put the temperature up half a degree and its made all the difference.
And like you I don't have any other complaints and reading others has made me realise just how lucky I am!! (never thought I'd be saying those words) 

[The Noob]

we'll put our 2 cents in here:

dietician lecturing all on diet, portion, yet most patients in the back sitting there with burger king, mcdonalds, bags of donuts, etc..

small stiff chairs in lobby.

patients walked/wheeled out to lobby and left. very low BP, and/or transport 1/2 to 1 hour later, no one checking on patient.

decent wifi, possible desktop computer in lobby with hand sanitizer beside.

stop putting pics of patients on dialysis on public board, rather put pics of these people in their heyday, to remind everyone they weren't always a dialysis patient.

better universal precautions for all.

asking ems/transport for routine to not keep running rig parked 2 foot from door blowing CM and blocking.

privacy curtains.

drop defensive attitude when questioned. look like your "user-friendly" and not ready to tear out someones throat for asking a question. no penalizing them for ask questions or don't agree with something.

have someone willing to sit down and educate patients/family on condition, treatment options, problems, etc. not just tell them to look it up on internet. many don't have, don't know how to use, unfamiliar with medical terminology.

coffee pot? ok i know thats asking alot.

more individualized treatment vs the "cookbook" method.
In the last month, several patients sent to hospital for serious side effects of "taking too much off".

DH also wanted to add another: social worker visits in unit. no privacy. everyone says "fine" when asked by same.
but there are 3 patients that routinely cry in their chairs every treatment.
 

[sullidog]

In my old center the defensive attitude was always a problem.
Also centers should be more commidating for the blind/vision impaired patients. This includes getting handouts, emergency guides and other important info to the patient in a form that they can understand. When I started I was never informed of any evacuation or emergency procedures because I couldn't read them and I was refused to accessible formats.

[dialysisadvocate]

Again, thank you all for your input. I am glad to see that some of you have experienced good situations with caring staff. My father, when on dialysis (passed away a year ago) experienced much of what many of  you are --..

Emergency preparedness is something that is required e.g. staff are suppose to educate patients how to clamp their bloodlines and disconnect from the machine in an emergency situation. (for the person who had mentioned this).

From what i am reading, as it continues, patients are not being included fully in their treatment plans, nor are some of you being identified as the 'center of the team'.  Many of  you it appears have not been fully educated as to the machine settings e.g. temperature. I remember my father was always cold. Once, one of the staff raised his temperature on the machine to the point that he ran a fever which prompted the staff to do a blood culture. At the time, I was not fully aware of the safe temperature ranges, but quickly learned. Although we were told that the physician needed to order the machine temperature, the staff often set the temperature and changed such at their own discretion

I found, more than not, technicians would make their own decisions about treatment options, problems, etc., without consulting the Registered Nurse.

Roberta
www.qualitysafepatientcare.com

[sullidog]

you summed  that up very well! No I was never shown how to clamp the lines til a year later.

[CebuShan]

I still have not been taught what to do in an emergency. I asked about it again today since the Head RN was there. She admitted that they are supposed to go over emergency procedures with us every quarter. She stated that she was working on getting it scheduled.

[tbarrett2533]

6.  This is the biggest one...social workers and dietitians who understand the needs of those of us who are young and working on dialysis.  The ones in my center can't seem to get out of the mindset that everyone on dialysis is elderly and dependent.  They have no real-world strategies for integrating dialysis into the lives of a young working person.

DITTO!!!!!!!!!!
also, nurses, techs and other patients (the older ones at my unit)
The older Patients at my unit sometimes I just want to slap..... they come in there all smiles and happy to be there (and question why I do not like being there) b/c for them its social hour for me its runing my social life!

[dialysisadvocate]

Emergency procedures must be explained to patients and patients must be educated in this area. This is crucial. When the state does their inspections they look at this.  Patients can always file a complaint, even be anonymous, in order for the state to investigate.... This can send a message to the facility that they need to clean their act up
Roberta
RMiklesRN@aol.com

[Dannyboy]

My experience in-center is only a month.

Staff is helpful and caring, no attitudes at all.

BUT: Only gripe I have is staff are non-stop LOUD talkers (to each other, about mundane non-Dialysis stuff, weekend plans, etc.).    There is a background hum in the room, with alarms going off and etc. so they must really get the volume up to be heard from one side of the room to the other.    Annoying as heck.

[Willis]

My experience in-center is only a month.

Staff is helpful and caring, no attitudes at all.

BUT: Only gripe I have is staff are non-stop LOUD talkers (to each other, about mundane non-Dialysis stuff, weekend plans, etc.).    There is a background hum in the room, with alarms going off and etc. so they must really get the volume up to be heard from one side of the room to the other.    Annoying as heck.

http://www.bose.com/controller?url=/shop_online/headphones/noise_cancelling_headphones/index.jsp

Yes, they're expensive, but I bought an older version a few years ago at a Bose outlet store. They really do work and well worth the money. I used to use them when traveling...which, alas, I don't do anymore. But I think they'd work great for a situation like you are talking about.

 

[sullidog]

A noise issue that I've found is that the patients turn up the tv's so loud, the center gave them headphones when they started, but patients don't use them for some reason

[The Lady]

That can't happen in my unit anymore.

There is no sound on the television unless you have headphones plugged in.

[dialysisadvocate]

It has been quite a while since you all commented -- I am wondering if the problems in your units have changed, eg. are these negative aspects continuing? Have these things stopped? Have any of you addressed such? If so, what was the facility response?
We now have an 800 number for patients to contact if you are having problems iin your unit, with care, retaliation, infection, etc
1-800-874-8842
And, to view 2011 dialysis surveys (inspection reports) in California - go to www.qualitysafepatientcare.com
Roberta Mikles BA RN - Dialysis Patient Safety Advocate