Gerald Slept Here!

[willowtreewren]

Oh, funny, Del! 

My grandfather was a moonshiner in the house where I grew up. I never knew him, but the folks around there knew the house! LOL!

It was in my mother's family on the Eastern Shore of Maryland.

 

[Gerald Lively]

Off to the operating room once again.  Angioplasty – until they get it right!!  Unless they get it wrong.  Yes, I caught the good Doctor eyeballing my bicep. Whatever!

This amounts to minor surgery, sort of.  I go in, argue over the hospital gown, give in, lay on a gurney under warm blankets until the warmness is gone, they wheel me in, I tell a joke, I zonk out, they wheel me out, and they say something about “routine”. 

The good old days are gone; we used to dance in the waist high weeds . . . er . . . grass, naked – okay, I had sneakers on – but I can dance no more.  All I can do is sing:  “I left my arm, in San Francisco, high on a hill, in my surgeon’s care . . . . . .

Doesn’t make sense?  Neither does this surgery.

gl

[boswife]

oh gl,, you always make sence to me....mabie it' an age thing?  lol   Sure hope THIS time they get it right???  Wishen you the best.. check back and let us know...      <----- yea, im into group hugging.  A socialphob thats into group hugs?  hum!

[willowtreewren]

Let us know how the roto-rotor job goes, Gerald.

[Gerald Lively]

Not much to tell.  They wheeled me in and I zonked out for most of an hour, and it was over.  My forearm is sore, the bandages are still on, and the good Doctor says he thinks we got it this time (widening of the vein).  I told jokes going in, jokes going out and that’s about it. 

Time will tell what variety the results might be.

gl

[willowtreewren]

I hope this time did the trick! 

Aleta

[Gerald Lively]

Third surgery for the fistula.  My wrist is still in ban after a day. Don’t wanna take it off.  Yet.  It feels okay.  (Yes, he is a Vascular Surgeon).  According to him, they angioplastied the crap out of that vein. 

I would like to comment on the anesthesia;  I don’t recall blinking out or missing any time, or waking up.  No hangover.  The Doctor said I was out for 45 minutes.  Michael Jackson shoulda got some of this stuff.

So, my wife and caregiver went to Sacramento today, leaving me alone.  I’m starving.  Had to make my own coffee.  Auggie is pestering me for play, so I took the little monster out in the forest and I believe he was wow’d by it all.  Oddly enough, our big cat followed as if he was protecting that little pooch.  Who knows was “pet ESP’ is at work here? 

“Big cat”?  After the big forest fire, we picked up a stray at the rented house.  Big calico.  She immediately made for a closet and dropped six new kitty-cats.  We kept four.  Judging by the widely different looks of those four cats, Mama-kitty got around the neighborhood.  I asked who she caroused with, but she isn’t talking.  She seems to like me – as long as I have a pocket full of dry pet food. 

So, we are in the deep woods and those urban critters are enjoying a touch of freedom.  That is, no cars, lots of places to explore and just a few faces they need to recognize.  And they all know how to use the pet door.

Still starving.  I wonder if I can stay alive for another four hours.  I feel naked without my caregiver and wife.  I wonder how much this recess-shopping trip  will cost?

gl

[Gerald Lively]

Someone:

If I stopped my dialysis, how long would I live?

8% kidney function at the moment. 

gl

[MooseMom]

gl, that's not an easy question to either ask or answer.  I guess it depends upon whether there are other health issues at play.  Still, it is a valid question and is asked more often than you think.

There have been numerous posters here on IHD who have said that they have decided to stop dialysis.  I don't feel completely comfortable saying this because I don't want you to think that I am deaf to your despair, but GL, if this is a road you decide to take, please speak to your doctor and to your family first.  And please consider hospice. 

There seems to be a general consensus here on IHD that it is wise to give dialysis at least six months before taking such drastic action.  Could you do that?

I am so sorry that you have been dealt this horrible hand.  I am so sorry for all of us.

[Gerald Lively]

I talked to my Doctor today.  I talked with the supervising tech.  I exploded like I haven’t in the last 30 years.  I shed my frustrations and complaints about the way they treat me and the other patients and I didn’t cut through the haze they live in.  There is an utter lack of respect for the patients needs and personalities.  I haven’t been treat so badly since I was a kid and if you think about it, that time period includes my stint in the military.

Not only is this a total disruption of my lifestyle, which I think I can cope with, but I am treated as an insult by those who are supposed to help.  I was so goddam angry they had to step back lest I reach out and crack some skulls. I made them interrupt my session for a meeting.

As an abused youth who has seen a daily beating, I know when I am just tolerated, talked down to, shunned and mistreated.  The first thing they did after my rant was have me sign some papers saying if I do this again I am out the door.

My fistula is not yet developed so home dialysis is not an option.  There is another dialysis center in town but I am not sure I should burn this bridge.  Instead I would rather force their care.  My bitch list is very long and it was not well received.  My gripe included documents showing that they take too much water out in every session.  Who do you know that has survived a water outtake of 6.4 kilos?  All I got for that was a shrug and an insult by the nurse who did it.

I really hate dialysis and this is not living, this is nothing more than a prelude to death.

By the way, suicide is not out of the question.

gl

[KraigG]

So, is the new fistula working? I'm on my second one, and neither one works. So I use the catheter they put in my shoulder in the hospital nearly 6 months ago. And you know what? It works perfectly!

I shower every day. Why not? I don't shower in the sewer. And the center is clean, super clean. And I've had no infections. I tell everyone to go screw themselves if they suggest that isn't a good idea. I've checked myself out of the hospital ADA too many times to count.

Don't let the doctors ruin your life. Let them make suggestions, but don't take their word for the gospel.

[cattlekid]

I'm sorry, whomever told you this is feeding you a giant load of BS.  I started my home hemo training with my catheter and there are plenty of other individuals who do home hemo with a long-term catheter.  I would push this big time with the clinic that you were looking at for the home hemo.  Make them tell you in no uncertain terms why they will not let you at least start the training with the catheter.  They can always bring you back in clinic for a few days to establish your buttonholes once your fistula is developed.  Hell, my training nurse even came to my house every night for a week to finish establishing the buttonholes because I ran out of time off work. 

I know it takes a lot of energy you might not have, but please push the home hemo option.  You need to get out of your clinic and get control of your own life if that clinic is so bad - especially if they are taking off 6.4 without batting an eye. 

My fistula is not yet developed so home dialysis is not an option. 

[Gerald Lively]

While I am not shy and retiring, I feel trapped.

To help make my point about the RIA dialysis people; “cattlekid” just outlined an option that I have never heard until now.  I can’t dream these options up, someone at RIA should have told me.  Why didn’t they tell me?

They answer: they don’t give a rat . . .  about their patients.  I have to get outta that place, dead or alive.  I won’t take this anymore.

gl

[MooseMom]

Some clinics are good, others are not.  Sounds like you got a "not".

Have you researched home hemo, and if so, is this an option you'd like to pursue?

If so, tell your clinic this is what you want.  If they give you reasons why you can't/shouldn't, bring that list to IHD, post it and let us have a look.  We can perhaps together come up with counterarguments.

[cattlekid]

Home hemo is not something that most clinics are going to come right out and push - heck, my own nephrologist isn't sold on it but sees that it's working for me.  If you are serious about home hemo, please send me a PM and I can put you in touch with a patient advocate from NxStage that can help you work through the system.

While I am not shy and retiring, I feel trapped.

To help make my point about the RIA dialysis people; “cattlekid” just outlined an option that I have never heard until now.  I can’t dream these options up, someone at RIA should have told me.  Why didn’t they tell me?

They answer: they don’t give a rat . . .  about their patients.  I have to get outta that place, dead or alive.  I won’t take this anymore.

gl

[ToddB0130]

Gerald ---- Please take cattlekid up on the offer to help you get the right contacts to have you switch over to home hemo ASAP.  I enjoy having you on this board way to much and am sad to hear you this frustrated and at the end of your rope.  You've told plenty of your story in your posts and you've overcome so much adversity in your past,  with the help of your wife (and hopefully this board) .... you can get beyond these nimrods at your clinic.  Have you told your nephrologist that they're taking off way to much fluid during your treatments ?  Perhaps he can intervene on your behalf.  TAKE CARE.

[Gerald Lively]

Today, a day that shall live in Dialysis infamy, proceeded with angst, threats, and other demeaning comments.  My appointment is 10 AM and I was on time, prompt as all patients should be.  As the world turns, these are the days of our lives and know not what the immediate future holds for you and I. 

I do believe my outburst of complaints last Thursday, which included a rather long list of creative expletives, was much too close to Friday the 13th.  Today, the administration attempted to solidify their position by having me sign one more paper (the third one) that says another outburst will result in me being booted out of RAI and onto the street.  Don’t let the door slap you on the ass on the way out.  I did exploit the situation by reintroducing my laundry list of complaints.

I have a plan.  The goal is home dialysis as quickly as possible - - chest catheter or fistula.

But first a question or two.  Does the act of denial of service to a kidney failure patient represent a liability to the Dialysis Center?  I admit that I terrified the Tech Guy with my expletive loaded tirade, but my outburst was laced with many issues that should be resolved.  And, by the way, this is the third time I have met with the Center’s administration to resolve these issues.  I can safely say that they are not listening.

Next question: If I leave RAI for another Dialysis Center, can RAI blackball me?  Think about that; I told these people how they fail as administrators and how they lack people skills when dealing with patients.  That could make the rather angry.

Whatever help you can offer, whether it is good or bad, I need to hear it within the next couple days.  I have an appointment with DaVita for the purpose of opening discussions.

gl

[MooseMom]

gl, several of our IHD members are very active in patient advocacy.  One of them is Meinuk, and I am channelling her to make a suggestion that I think she would make (I am hoping that perhaps she might see your post and come to the rescue.  She knows so much more about this stuff than I do.) 

Why not contact the ESRD Network for the region where you live.

http://www.esrdncc.org/index/index

Scroll down to the US map, and click on your area to get the homepage for your specific network.  Contact them immediately and tell them what you have told us.  They should be able to get you on the right track to sorting this out.

As practice, could you list here the specific issues you would like to raise with your center?  Do you have valid complaints?  Post them here, and let's have a look at them.  Perhaps we could help you refine your comments so that you can present them in a way that won't put the clinic on defense.  But please do contact your ESRD network; this is the type of thing they should really be able to help you with.

[Gerald Lively]

Some time during the Spring of 2011, my kidney’s began to fail.  My doctors did not see this until mid-July when I was hospitalized for Hodgkin’s Lymphoma and had a CT Scan.  By then I was semi-conscious.  My creatinine was between 14 and 17 depending on who you ask.  The doctors from RAI, according to my wife, said I had only two weeks to live when I was hospitalized.  RAI was on the spot recruiting me for their service from the very beginning.  At that point I only had an 8% kidney function. That is how I arrived to the World of Dialysis.

My working career after college, was local government.  I retired from a City Manager job to deal with health issues.  I specialized in organization design, small group dynamics, and management audits.  In other words, I know what a dysfunctional service organization looks like.

Issues with RAI at Chico, California:
1.    In general there is an attitude of dismissal among the staff that directly services the patients.  This does not include the two doctors.  In practice, a patient is seated, hooked up and four hours later, is unhooked.  During that time, the patient sits, alone, unaided, unless they can flag down a technician or an alarm sounds.  There are TVs that sometimes work. We begin.
2.   A patient arriving at the appointed time, enters a lobby equipped with a receptionist window where no one is there, a restroom, and a locked door.  It is the habit of patients to knock on the door.  The trick is to catch the attention of a technician  on the inside.  Knocking is problematic, it usually does not work – unless the knock is loud and hard.  I took to kicking the door and that upset the staff.  So, there is a telephone for arrivals to call in.  On occasion that phone is answered promptly.  I cannot hear a telephone voice so I opt to bang on the door.  There is a sign instructing arrivals to use the phone but I cannot see unless I have my reading glasses on.  And I have failing eyesight. The staff told me yesterday that it is state law that the door to the "pit" be locked. This cannot be true because on more than one occassion the staff places a garbage can to prop that door open. The real problem is that the receptionist window is vacant.  The operation of the lobby is unprofessional.
3.   Inside, the room is a large U-shaped arrangement with about twenty machines and a centered counter arrangement.  Windows line the walls behind these dialysis machines.  I have an eye sensitivity problem due to a Macular Degeneration and cannot look into a glare without gaining a headache described to me by my eye Doctor as Ophthalmic Migraine.  I requested a seat/machine against the south wall and I was ignored.  Instead I have been continually place facing those windows.  My repeated requests have been ignored until this week, after I raised a ruckus ( a real loud outburst on my part ).
4.   At the beginning, there was a meeting of the staff and myself (and wife) whose purpose seemed to be the signing of a large stack of papers. I was still suffering from the effects of toxins in the blood stream.  I protested the signing of anything that I could not read.  They insisted.  I discovered that I was unable to even sign my name.  But they insisted. I told them to stuff it.  My wife signed a few of these papers.  I know that California law advises that a person read the documents before signing.  This was a book sized stack of paper.  At that point I did give a damn if I lived or died due to this delirious state of mind.  They let me in anyway.
5.   I have repeatedly requested time with the Social Worker there.  She never comes.  My wife is a social worker; I have prepared budgets for over a hundred social workers in the employ of the county here, I know social workers.  This lady is incompetent and is afraid to talk to me.  The Social Worker in this organization should be my most frequent interface with RAI.  I demanded to see her and have her out in the “pit” talking to all patients. They promised to begin that practice next week.
6.   Twice, due to inattention, the nurse has taken out 6 or more kilos of water. Until you have this happen to you, you have no idea what this does to a Human Being. One male nurse has responded to my complaint and we consult as he sets up the equipment.  This works very well.  The other Nurse has an attitude and will not consult.  Yesterday, I met with the Administration and forced this issue with said nurse present.  After, we went out to get hooked up.  She said to me. “How much do you to take out?”  This is not how to run a dialysis center.  The entire point was to “consult”, not have a patient directed service.  Her tone can be describe as facetious.  She is supposed to be the professional.
7.   I published a small list of complaints on this website a few weeks back.  The RAI staff reacted poorly to that list.  It was the second time I forced a meeting with the doctors and employees there.  This latest event will be the third time I have forced them to listen to complaints.  Having overheard the shouting, an old black man-patient said to me, “I am behind you all the way.”  His complaint was inattention.  Another black man told me he takes “horse tranquilizers” so he can sleep through the inattention.  He has a fistula and refuses to allow the staff to touch him.  That is how bad it gets.
8.   In the early months I had difficulty obtaining information.  I did complain regularly about that.  During meeting #2 we reached an agreement. I now get blood work and diet info as they are generated.  Why did I have to ask repeatedly?
9.   I am just now hearing about home dialysis for those with a chest catheter.  Even as I asked about this yesterday, they seemed puzzled at the idea.  So, I requested information on what RAI can do for me in that regard.  The betting odds are that I will hear about this again.  Why haven’t they told me about this before?  Why do I have to use “I Hate Dialysis” to obtain critical lifestyle data?  Where are the health professionals?
10.   Water.  For several months they told me to drink no more than 32 ounces a day.  During this period, once, they took out 6 kilos.  It turns out that I urinate as much as any normal person with a working kidney, and this water restriction was unnecessary.  I drink water, I pee.  I don’t drink water, I don’t pee.  I have the overwhelming impression that they treat all patients with one template.  I brought this up with the Doctor and she agreed that I could drink up to 50 ounces of liquids per day.  It seems my 8% kidneys can handle this or I don’t have a kidney condition.  Yes, we have had a CT scan of my kidneys and it was very interesting.  They were searching for kidney stones.  There were none.  This was done by my Urologist who offered no comments other than the absence of a kidney stone.
11.   More water.  There is a staff nurse who conducts the training for home dialysis.  We asked her about our domestic water supply which comes from two wells on the property; one is 345 ft. deep, the other is 200 feet deep.  We filter the particulates and have lived on this water for 35 years now.  The nurse thinks poorly of non-municipal water.  She says it may be too hard.  We have a water softener.  She says this may be too salty.  We agreed to have everything tested.  We contacted our contractor about plumbing in a new line dedicated to whatever condition the nurse requires.  We haven’t heard from here for over a month.  Now I read on “I Hate Dialysis” that softened water is acceptable.  I see this on the DaVita website as well.  This indefinite feedback from the nurse can be costly.  What is going on?
12.   There are patients in the “pit” that are seriously ill.  Several have coughing fits.  In my lifetime I have a weakness for respiratory problems (I have never smoked) and am subject to bronchitis. During my first encounter with Hodgkin’s Lymphoma I caught a bout of bronchitis and I might say that this was a difficult time for me.  So, I asked not to be seated to someone who is constantly coughing.  There are two isolated positions at the RAI pit.  These coughing patients are never placed in isolation.  At the very beginning I requested distance from these people.  It was quickly forgotten.  I am out in the pit next to these people and the isolation rooms go to ordinary patients.  For the countless time, I brought this up yesterday.  They placed me in a corner where the chair either sits directly up or lays down flat.  No in between.  Attitude.
13.   The Doctors.  We see a doctor once a week.  Right there in front of the other patients.  We talk about bowel movements, urination and other essential health data that I would rather keep to myself.  Everyone on that center now knows how often I pee and in what quantities.  Although I haven’t raised the issue, I want to know why?

Despite this list and in a category I would call “otherwise”, there is a prevalent attitude.  Patents are treated as “things”, are demeaned, and I am not the only patient to think this way.  In writing a document such as this, one cannot describe each and every incident.  I describe this as a prevailing attitude among “some” of the key staff.
The mission of RAI is not patent first and I do not march to the drumbeat of the fascist policies of this place, and I certainly am not shy about patient advocacy.  I plan to meet with DaVita on Monday and explore my options with a goal aimed at home dialysis.  We live 30 miles from town and this seems to be the most reasonable approach.  Yet, the bridges involved seem to be burnt.  I am concerned about the residual effects of this.  Would DaVita ban me for being a disturbing factor?  How long would I last without dialysis?  Long enough to train for home dialysis?  What about these other patients?   Am I so jaded that I really am a disrupting element?  And, yes, we will be locating the nearest office for ESRD. 

How does this list fit wsith your ideas of patient abuse?

gl

[Gerald Lively]

I did not proof that post.  If you have trouble reading it, comment and I will respond.

[Gerald Lively]

I botched that post so bad I feel a need to repost.  Here goes:

Some time during the Spring of 2011, my kidney’s began to fail.  My doctors did not see this until mid-July when I was hospitalized for Hodgkin’s Lymphoma and had a CT Scan.  By then I was semi-conscious.  My creatinine was between 14 and 17 depending on who you ask.  The doctors from RAI, according to my wife, said I had only two weeks to live when I was hospitalized.  RAI was on the spot recruiting me for their service from the very beginning.  At that point I only had an 8% kidney function. That is how I arrived to the World of Dialysis.

My working career after college, was local government.  I retired from a City Manager job to deal with health issues.  I specialized in organization design, small group dynamics, and management audits.  In other words, I know what a dysfunctional service organization looks like.

Issues with RAI at Chico, California:
1.    In general there is an attitude of dismissal among the staff that directly services the patients.  This does not include the two doctors.  In practice, a patient is seated, hooked up and four hours later, is unhooked.  During that time, the patient sits, alone, unaided, unless they can flag down a technician or an alarm sounds.  There are TVs that sometimes work. We begin.
2.   A patient arriving at the appointed time, enters a lobby equipped with a receptionist window which is vacant, a restroom, and a locked door.  It was the habit of patients to knock on the door.  The trick is to catch the attention of a technician  on the inside.  Knocking is problematic, it usually does not work – unless the knock is loud and hard.  I took to kicking the door and that upset the staff.  They claim it bothers the patients but the patients are the people kicking the door.  So, there is a telephone for arrivals to call in.  On occasion that phone is answered promptly.  I cannot hear a telephone voice so I opt to bang on the door.  There is a sign instructing arrivals to use the phone but I cannot see unless I have my reading glasses on.  And I have failing eyesight. The real problem is that the receptionist window is vacant.  Very unprofessional for a medical service office. 
3.   Inside, the room is a large U-shaped arrangement with about twenty machines and a centered counter arrangement.  Windows line the walls behind these dialysis machines.  I have an eye sensitivity problem due to a Macular Degeneration and cannot look into a glare without gaining a headache described to me by my eye Doctor as Ophthalmic Migraine.  I requested a seat/machine against the south wall and I was ignored.  Instead I have been continually placed facing those windows.  My repeated requests have been ignored until this week, after I raised a ruckus ( a real loud outburst on my part ).
4.   At the beginning, there was a meeting of the staff and myself (and wife) whose purpose seemed to be the signing of a large stack of papers. I was still suffering from the effects of toxins in the blood stream.  I protested the signing of anything that I could not read.  They insisted.  I discovered that I was unable to even sign my name.  But they insisted. I told them to stuff it.  My wife signed a few of these papers.  I know that California law advises that a person read the documents before signing.  This was a book sized stack of paper.  At that point I did not give a damn if I lived or died due to this delirious state of mind.  They let me in anyway.
5.   I have repeatedly requested time with the Social Worker there.  She never comes.  My wife is a social worker; I have prepared budgets for over a hundred social workers in the employ of the county here, I know social workers.  This lady is incompetent and is afraid to talk to me.  The Social Worker in this organization should be my most frequent interface with RAI.  I demanded to see her and have her out in the “pit” talking to all patients. They promised to begin that practice next week.
6.   Twice, due to inattention, the nurse has taken out 6 or more kilos of water (6 kilos is 12 to 15 pints of water). Until you have this happen to you, you have no idea what this does to a Human Being. One male nurse has responded to my complaint and we consult as he sets up the equipment.  This works very well.  The other Nurse has an attitude and will not consult.  Yesterday, I met with the Administration and forced this issue with said nurse present.  After, we went out to get hooked up.  She said to me. “How much do you want to take out?”  This is not how to run a dialysis center.  The entire point was to “consult”, not have a patient directed service.  Her tone can be describe as facetious.  She is supposed to be the professional.
7.   I published a small list of complaints on this website a few weeks back.  The RAI staff reacted poorly to that list.  It was the second time I forced a meeting with the doctors and employees there.  This latest event will be the third time I have forced them to listen to complaints.  Having overheard the shouting, an old black man-patient said to me, “I am behind you all the way.”  His complaint was inattention.  Another black man told me he takes “horse tranquilizers” so he can sleep through the inattention.  He has a fistula and refuses to allow the staff to touch him.  That is how bad it gets.
8.   In the early months I had difficulty obtaining any information.  I did complain regularly about that.  During meeting #2 we reached an agreement. I now get blood work and diet info as they are generated.  Why did I have to ask repeatedly?
9.   I am just now hearing about home dialysis for those with a chest catheter.  Even as I asked about this yesterday, they seemed puzzled at the idea.  So, I requested information on what RAI can do for me in that regard.  The betting odds are that I will not hear about this again.  Why haven’t they told me about this before?  Why do I have to use “I Hate Dialysis” to obtain critical lifestyle data?  Where are the health professionals?
10.   Water.  For several months they told me to drink no more than 32 ounces a day.  During this period, once, they took out 6 kilos.  It turns out that I urinate as much as any normal person with a working kidney, and this water restriction was unnecessary.  I drink water, I pee.  I don’t drink water, I don’t pee.  I have the overwhelming impression that they treat all patients with one template.  I brought this up with the Doctor and she agreed that I could drink up to 50 ounces of liquids per day.  It seems my 8% kidneys can handle this or I don’t have a kidney condition.  Yes, we have had a CT scan of my kidneys and it was very interesting.  They were searching for kidney stones.  There were none.  This was done by my Urologist who offered no comments other than the absence of a kidney stone.
11.   More water.  There is a staff nurse who conducts the training for home dialysis.  We asked her about our domestic water supply which comes from two wells on the property; one is 345 ft. deep, the other is 200 feet deep.  We filter the particulates and have lived on this water for 35 years now.  The nurse thinks poorly of non-municipal water.  She says it may be too hard.  We have a water softener.  She says this may be too salty.  We agreed to have everything tested.  We contacted our contractor about plumbing in a new line dedicated to whatever condition the nurse requires.  We haven’t heard from her for over a month.  Now I read on “I Hate Dialysis” that softened water is acceptable.  I see this on the DaVita website as well.  This indefinite feedback from the nurse can be costly.  What is going on?
12.   There are patients in the “pit” that are seriously ill.  Several have coughing fits.  In my lifetime I have known about a weakness for respiratory problems (I have never smoked) and am subject to bronchitis. During my first encounter with Hodgkin’s Lymphoma I caught a bout of bronchitis and I might say that this was a difficult time for me.  So, I asked not to be seated to someone who is constantly coughing.  There are two isolated positions at the RAI pit.  These coughing patients are never placed in isolation.  At the very beginning I requested distance from these people.  It was quickly forgotten.  I am out in the pit next to these people and the isolation rooms go to ordinary patients.  For the countless time, I brought this up yesterday.  They placed me in a corner where the chair either sits directly up or lays down flat.  No in between.  The chair is in need of repair. Attitude.
13.   The Doctors.  We see a doctor once a week.  Right there in front of the other patients.  We talk about bowel movements, urination and other essential health data that I would rather keep to myself.  Everyone on that center now knows how often I pee and in what quantities.  Although I haven’t raised the issue, I want to know why?
14.   I have discovered that binder pills make no difference in my bloodwork.  All of my numbers are good.  So, I went a full month without binder pills, drank beer and ate whatever I wanted.  My numbers are still good.  What is going on?

Despite this list and in a category I would call “otherwise”, there is a prevalent negative attitude toward patients.  Patents are treated as “things”, are demeaned and ignored, and I am not the only patient to think this way.  In writing a document such as this, one cannot describe each and every incident.  I call this as a prevailing attitude among “some” of the key staff.

The mission of RAI is not patent first and I do not march to the drumbeat of the fascist policies of this place, and I certainly am not shy about patient advocacy.  I plan to meet with DaVita on Monday and explore my options with a goal aimed at home dialysis.  We live 30 miles from town and this seems to be the most reasonable approach.  Yet, the bridges involved seem to be burning.  I am concerned about the residual effects of this.  Would DaVita ban me for being a disturbing factor?  How long would I last without dialysis?  Long enough to train for home dialysis?  What about these other patients?   Am I so jaded that I really am a disrupting element?  And, yes, we will be locating the nearest office for ESRD. 

How does this list fit with your ideas of patient abuse?  Am I just a disgruntled patient?

gl

[MooseMom]

I certainly would not want to be a patient at your clinic, gl, and I'd be doing everything possible to get out.  It is very difficult to change the prevaling attitude in a clinic without booting all of the employees, techs and managers, so I don't know how successful you would be in your attempts to get them to be nicer to you.

I find it remarkable that there is so often no one at reception.  It's entirely possible that it IS state law in CA to keep the door to the treatment area locked; this is for the security of the patients, and I imagine that one reason staff keeps a garbage can there to keep the door open is because they don't like this particular state law.  It's inconvenient for them to keep answering the phone, which I can understand, but they should have reception manned.  That's the first thing they should do, and it shouldn't be that hard a situation to rectify.

Your clinic seems to be completely ignoring your eye/vision issues, and that's just cruel.  If they aren't going to give you a seat along the south wall, would it be possible for you to wear sunglasses to protect you from the glare?  You shouldn't have to do that.  I'd be interested to know if there is some good reason why they can't seat you where you want, especially if your doctor agrees that your eyes are fragile.  Maybe you could ask them why.

I understand your concern about being considered too non-compliant to keep at the clinic.  This is what you need to discuss with the ESRD network for your area because I am not entirely sure how this stuff works from a legal point of view.  I can't imagine how treatment can be denied you, but I do know of cases where specific clinics have refused to treat certain patients, but it doesn't follow that a patient would be refused treatment from all other clinics.  I don't want to steer you wrong here, so I'm not going to say much more about it, OK?

Privacy doesn't seem to exist in any clinic; your complaints in this regard are all too common, I'm afraid.  When my mom was on dialysis, she'd complain about the same thing.

I am horrified that you were forced into signing a shedload of papers when it was clear that you were medically unable to digest their contents.  I've worried a lot about this myself, and I have yet to figure out a way to politely refuse to sign anything until I had a clear enough head.  Do you know what you may have signed that you wish you had NOT signed, given the chance to think about it?

After rereading your post one more time, I am convinced that you need to cut your losses, find a new clinic or begin dialyzing at home.  Is your eyesight good enough to allow you to self-cannulate?  That's my only real concern about his particular pan.  I think you are one of those people who would do much better taking charge of your own treatment.

You ask a very interesting question...are you so jaded that you've become a disrupting element?  Your clinic may deserve every "disruption" you throw at them, but is this the best way to get them to listen to you?  If you yell, what people hear is not what you are saying but, rather, how loudly you are saying it.  Do you think this might what is happening to you/your clinic?  You've asked an honest question, and it deserves an honest answer.

[Gerald Lively]

The issue of my behavior and/or reaction to an accumulation of frustration is probably unforgivable to the casual observer and the staff.  They have, obviously taken a defensive position.  I can’t help that.  I simply exploded at the putdown from the staff for pounding on the door trying to get inside.  My own head says, “Enough, enough, I have had enough.”  Yes, I am worried that I came off as a disgruntled patient might.  I think I have a case.

Yes, I plan to leave RAI as soon as possible.  I hope to avoid collateral damage such as a ban from alternative service providers.  For that reason I plan to discuss this with ESRD and DaVita.  Also, I plan to inform my Doctor of a change to another Doctor, since this RAI franchise is owned by this Doctor. 

My approach at DaVita is planned to be home dialysis training with in-house dialysis for as long as necessary - - then I am out the door.

As much as I regret my explosion, I must say it was an automatic reaction.  It had no pre-thought.  I must ask myself the question, “How long am I supposed to put up with disregard?”  I am a human being and I have ego and pride, and I will never submit.  ‘Tis the basic idea of freedom.

Some rebuttals:  If the door is held open by a garbage can at the same time they tell me they cannot open the door without a phone call per state law, who is breaking the law?

If all of these things can transpire, what is there that I am not aware of?

gl

[cariad]

Gerald, I am sorry that you are going through all of this nightmare. I would get out of there. I do not think you have to worry about being banned from other units, and many have told about transferring out of an awful clinic to one that perfectly suits their needs. If the doctor owns the clinic and is doing nothing to address these unacceptable issues, then he/she is as much to blame. So, absolutely, switch doctors as well.

Another resource if you do find you are being denied dialysis, treatment which you have a legal right to be able to access, go to dialysisethics.org or PM plugger (Chris) through IHD. He has experience battling the horrible clinics. I do know that these behavioural contracts are what they try with "difficult" patients (in quotes because I don't believe you are such a patient) and creates a paper trail for them to use to bar you from the premises. You MUST by law be able to receive dialysis, and home dialysis is seen as a good option for people who, for whatever reason, do not get on with their unit. I know these places always craft everything to make it seem like its entirely the patient's fault, and that can really play with your head after a while. Get away from them, it is not worth the upset to stay on principle. They sound downright monstrous to me.

[ToddB0130]

Gerald --- as others have said on this board, you *are* a customer,  not just a patient ...... and as such,  I think you have a right to try to tell them your issues and hope they would work to resolve them (in business,  it's never possible to satisfy *every* customer and that's why there are other choices).

I think you have a great plan in mind.  Go to ESRD and Davita and explain to them that you're willing to do in center dialysis only for as long as it will take for you to do the training for home hemo. (I think you hate in center dialysis more than dialysis itself .........you've certainly been through a great deal in your life already and I *think* if you're able to get to a modality that will provide you more freedom and self control than in center does,  you'll get past some of this).

It is sad (and a bit scary) to hear the stories about bad customer care at dialysis centers.  I'm still pre-D and it all makes me quite nervous about my own choice for in center. (I live alone and don't feel I am in a position to start this journey on my own with either home hemo or PD).  I sure hope my experiences with the people who work at at the center are decent.  Having to start this at all is traumatic enough without dealing with poor workers.

With regards to not having someone in the reception area --- Is that a center requirement (to have a receptionist) ?? If so,  you can report them .... particularly if the garbage can thing is really a security risk or not allowed.

My advice - Keep looking for other options to move to another center (I don't think you'll be 'banned' for having a 'bad attitude' if you can clearly communicate what you are looking for an what you need .... honestly,  like I said above ..........you're a customer and ask long as another center is able to get you in their seat and generate some billing ......they will take you).  Until that happens,  please *try* to keep working with the center you are at.   Requests to be seated in particular seats due to your eye problems and respiratory history are completely fair.   The fact they're not honoring them seems to mean they're not taking you seriously.   I say that you should 'pull out the big guns' and get one of your doctors (or more if you have them) to write a note saying THEY are requiring you be seated in a place that will be satisfactory for both your eye and your respiratory conditions.

Of course,  if your currently center really is being douchey about it,  they may make you wait longer for your 'required' seating or do something else miserable .........but like I said,  do your best until you can get set up in another center and then give them the big F.U.

One last thing ........... when you do go to the Davita,  see if you can 'chat' with some of the patients that are on the floor while you're there.  They may be able to give you a bit of a 'heads up' on that center as well.  And be up front about your "demands" ..........talk to the center manager and get a commitment that they'll seat you regularly in a seat that suits both your eyes and respiratory concerns (frankly to put it bluntly,  your current center is being dicks about that .............. you are scheduled to be there regular days and regular times,  how hard would it be to say (in general) ..."This is Gerald's seat" when he's here M-W-F from 11AM to 3PM (or whatever) ..... seems really petty of them.  They could certainly be more organized.

And being Pre-D .......the whole fluid thing kind of still confuses me .......... Can't you say "I'm feeling pretty good,  let's start by taking of 3 kilos (6 pints of water) and see how it goes" ........... I really hope I'd be the one to control this (at least as much as they do). Personally 'patient directed care' sounds pretty good to me !!

Anyway Gerald --- You have my best wishes.  I hope very soon that you are regaling us all with your stories about your home hemo training and implementation.  VERY SOON I HOPE.  Hang in there.   You have every right to demand better care and concern from your clinic.  You may be right that they think you're a disruptive patient ........I think you're AWESOME.  Keep up the fight to get what you want and deserve.