Assumptions will get you nowhere (a small rant)

[cattlekid]

So as I continue along in my reading here and elsewhere, there is a continuing theme that just irks me to no end.  It's the theme of "you're in ESRD, which means you are helpless and must rely on others".  Along with another related theme of "if you choose to be on in-center dialysis, you *will* be sick and disabled and not well". 

These themes just bother me endlessly.  I see them in my clinic as well, with how the SW, dietitian and neph treat the patients.  Maybe it's because most of the patients are elderly and many have limited English skills.  I've fought this fight with the staff already - I'm young (only 40), and have full command of my faculties.  I work full-time, do incenter D 3x per week and still manage to maintain my household and have some semblance of a social life.  I don't need the patronizing attitude and information hoarding of the SW and dietitian.  I actually had the dietitian say that they deliberately withhold information from patients when they first start in-clinic because they feel overwhelmed.  I gave her the what for and told her that she is NEVER to withhold information from me again - in fact, I told her that all I need her for from this point on is to hand me my lab sheet each month.  Anything else I can find out from my own research.  The SW is just as pointless - I had to do the KQDOI (or whatever the acronym is) questionnaire last month and then when it came back, there were low scores on some areas and she absoultely had nothing to offer on how I could improve those scores. 

And for those who say that I should start a different modality, please save your typing.  My mom is currently being tested to donate and I have another live donor in the wings as well.  I prefer incenter D as a stopgap until I know that I have no live donors left to be tested.  At that point, I'll switch to NxStage. 

What is it about ESRD that makes people assume we automatically become helpless invalids?  I totally understand that I may be an anomaly - but gosh dang it, give me some credit, already.

If you've made it this far, thanks for reading and have a drink on me.   

[Cordelia]

I'm a year younger than you and I completely agree with your post     

I get very offended when someone says I'm "THE INVALID" I'm quite capable of everything, so I need a machine to clean out my kidneys, so what, I'm just like everybody else.

I go to what's called a "Satellite Unit" dialysis clinic where the patients are younger and not too old and don't have amputations. That helps me to feel not "so sick"

[MooseMom]

(Taking a sip of ice water)  I SO understand.  My mother was on D for 5 years, and she fit the patient-mold you described.  I think you are right...I think most incenter patients are of the same type, and the staff reacts accordingly.  It's understandable, I guess, but it's unfair and unwise.  I guess it is easier to deal with all patients the same way, and SWs get lazy.

You shouldn't HAVE to change your modality just so that you can get good treatment from staff that won't infantalize you.  Those who have the luxury of being able to dialyze at home are lucky that they can do it, but most people HAVE to go in center for a whole myriad of reasons, and that does not mean that they should automatically be treated as amorphous blobs.

I have to admit that I have this idea in my head that equates in-center dialysis with disability.  If you have great staff and get good dialysis, then there is no reason that in-center D shouldn't be a viable choice.  But I do think that in the profit-driven D world in the US today, that ideal is hard to achieve for a lot of patients. 

I can certainly understand how incenter D would be a good "stop-gap" choice while awaiting a live donor transplant.  I would probably do the same.  And I would probably end up posting a similar rant on IHD.

I think you are indeed an anomaly.  Your staff probably doesn't have a lot of experience dealing with relatively healthy ESRD patients.

[Willis]

Well, I'm 58 and I don't care what they say because I still work 50-60 hrs/week and exercise strenuously at least 10-12 hrs/week, sometimes more. My younger colleagues don't want to do anything after work except go grab a beer. (Nothing wrong with that BTW, I don't mind a pint or two myself once in awhile.) I doubt most of them could keep up with me. 



 

[cattlekid]

I think that's awesome!     I hope to take after my maternal grandmother...she's turning 85 in August and she rocks!  She bought herself a laptop, got hooked up to the Internet, keeps track of us on facebook, drives everywhere, travels and has a marvelous time.  Takes one(!) BP pill a day - amazing!!!!!   

Well, I'm 58 and I don't care what they say because I still work 50-60 hrs/week and exercise strenuously at least 10-12 hrs/week, sometimes more. My younger colleagues don't want to do anything after work except go grab a beer. (Nothing wrong with that BTW, I don't mind a pint or two myself once in awhile.) I doubt most of them could keep up with me. 

[misslynette]

This is interesting to read. My husband is disabled, was before his kidneys failed. But he can maintain a decent life, and tend to his needs for the most part. I have been frustrated by the lack of information in the clinic. It seems as if everything has to be forced out of the staff. No one has ever suggested we sit down and discuss his options. We've researched the different kinds of dialysis and brought them up at the clinic. Then they jump all over it.

Maybe it's as y'all have said: they view the people in clinic as being a certain personality type? having certain health issues? I don't know, but it is f.r.u.s.t.r.a.t.i.n.g.

Someone dropped by Mike's chair day before yesterday, said "transplants aren't the answer, probably can't get one because you're O+, everyone's O+, gotta take drugs, Medicare only pays three years," etc etc etc. So they discussed peritoneal. "Not the answer, lots of infection risk, lots of supplies, real hassle" etc etc etc. So onward to home hemo: "Not the answer, gotta have someone to help, can your wife do it? is she capable? gotta take a class, lots of supplies" etc etc etc.

WTH? We don't need pollyanna, but it's discouraging enough to find ourselves with this completely new set of circumstances to deal with, without having Mr. Hopeless drop by to chat. Turns out, Mike would be covered for more than 3 years of anti-rejection drugs because he was on Medicare before his kidneys went out.

My plan is this: Get that fistula, which should have been done looooooong ago, get evaluated for transplant at the same time, get Nxstage so we can travel while awaiting the transplant he needs.

I don't get giving up from the outset. And I really don't get the no-information/incorrect-information thing.

Sorry for adding my min-rant to yours, but I really hate this sense of helplessness that seems to be expected. Not helpless. But good/accurate information would be a huge help.

[cattlekid]

From reading here and elsewhere and from my experiences, I truly think that center staff just can't handle anything more than the basics.  They downplay anything else because it means more work for them and something outside of the norm.

 When I was ranting to my dietitian and SW, I told them that if my donors don't work out, I'm gone.  I am bolting for a different clinic chain that does NxStage training.  Currently, I dialyze at an FMC center and the closest NxStage center to my home is a DaVita center.  When I told them that I might be leaving, you should have seen the look of shock and horror on their faces.  They started sputtering about how they have a clinic in their chain that does NxStage training.  Sure, I'm going to drive 10 miles each way out of my way when I can go to a closer clinic just a couple of miles down the road.  Sorry, I'm gonna take my commercial insurance and bolt.  I'm sure that got back to the clinic manager right away - it seems like ever since I dropped that bombshell, I get a lot better treatment around the clinic.  Actually, I think that the dietitian and SW are scared of me - because I told the dietitian if she ever withheld info from me again, she was going to be reported. 

I don't take kindly to being kept in the dark.

Someone dropped by Mike's chair day before yesterday, said "transplants aren't the answer, probably can't get one because you're O+, everyone's O+, gotta take drugs, Medicare only pays three years," etc etc etc. So they discussed peritoneal. "Not the answer, lots of infection risk, lots of supplies, real hassle" etc etc etc. So onward to home hemo: "Not the answer, gotta have someone to help, can your wife do it? is she capable? gotta take a class, lots of supplies" etc etc etc.

WTH? We don't need pollyanna, but it's discouraging enough to find ourselves with this completely new set of circumstances to deal with, without having Mr. Hopeless drop by to chat. Turns out, Mike would be covered for more than 3 years of anti-rejection drugs because he was on Medicare before his kidneys went out.

My plan is this: Get that fistula, which should have been done looooooong ago, get evaluated for transplant at the same time, get Nxstage so we can travel while awaiting the transplant he needs.

I don't get giving up from the outset. And I really don't get the no-information/incorrect-information thing.

Sorry for adding my min-rant to yours, but I really hate this sense of helplessness that seems to be expected. Not helpless. But good/accurate information would be a huge help.

[jbeany]

"if you choose to be on in-center dialysis, you *will* be sick and disabled and not well". 

I get irritated at the lack of balance to this.  It's that one-size-fits all approach that just makes my teeth grind.  Everyone has different experiences with D and the different modalities.  I hear an implied "Get a transplant" in that, as if having a transplant waves a magic wand and cures all your health issues.  Ummm, not always.  (Wanna see proof?  I've still got visible intestines because of my complications.  Or check into Otto's transplant story.)  I know people on D who continue to work full time, too.  (Take bow, Kitkat, Zach, and all the others who manage this.)  I did do better on home hemo physically, but I had several at my center who tried and just couldn't take it because of the stress of having to do it without professional back-up.

miss lynette - just ignore Mr. Hopeless! If he shows up again - send him here, please!  We'll have some fun with that boy...

As for being treated like an infant - well, ya just gotta train 'em like puppies.  Keep rubbing their noses in the fact that you have brains, you have done research, and you want to know real answers.  I think the most frequent response I got to questions for the first couple of months after I started was "No one has ever asked me that before."  Eventually they figured it out.  Arf! Arf!  Good doc.

[MooseMom]

Forewarned is forearmed.  I'm really glad this thread exists because now I am getting a good idea of how to handle D staff.  I intend to gently but firmly make it clear that I have a pretty good body of knowledge about dialysis and CKD.  If they annoy me, I will not be rude, but I will smile indulgently and courteously remind them that I know my phosphorus from my potassium, thank you very much.  I am going to work under the assumption that they will be all too happy to have a patient who is engaged in her treatment.  I plan to be the star of the show.

[jbeany]

It is possible, MM!  I had a great working relationship with my team, once they got past the "You don't know anything" stage.

[MooseMom]

By the time I start D, I will have been with my neph for at least 7 years and will have been on the transplant list for one year.  They can't possibly assume that I will know NOTHING, but in case they do, I will very shortly disabuse them of that erroneous notion.

[lmunchkin]

Well, my husband, Jay, is an INVALID!  He depends on me solely!  The In-Center D was just not his nor my cup of tea!  We went with NxStage because #1) Being at Home 2) You set your own hours of dialysis & 3) I can work full time. 

Where I gritted my teeth: Is when the center left me out all together, never told me a thing.  I went through withdrawals and pulled teeth to find out about his care.  Well not no more!  That's not to say they didn't give him good dialysis, all Im saying is, I DIDNT KNOW if he was getting cleansed like he should!  Some times they don't tell the Spouse anything! 

I do believe Modality determines your situation whether it be transplant, Incenter, or home.  But there are people with ESRD that ARE invalid and really need the help!!!!!  The nursing home's are full of them!  Well, our home is our little Nursing Home and I will care for my "little" patient and not ask anything of anyone!

lmunchkin     

[PatDowns]

Hi CK - I think you pretty well know my feelings about how patients can do well on incenter dialysis if they are willing to be aggressive in not allowing substandard care.  Unfortunately, the sickest, most vulnerable patients end up in-center and are the least able to advocate for themselves.  Providers understand this and abuse the situation with impunity.  Nephrologists are just as complicit since the providers pay them handsomely to go along with the program.

To me, this is because providers act like an oil cartel.  No matter how big or small, all are willing to play by the same rules to guarantee their piece of the pie.  While no oil producing country is willing to buck the system, so it goes with dialysis providers.   

All involved with esrd treatment are complicit - from the ESRD Networks whose BODs are comprised of the providers - the NKF and AAKP who rely on providers for funding - to the state surveyors who turn a blind eye.  It takes negligence of the highest degree coupled with a whistleblower to even get a bad facility closed down.   In states and urban areas that have a majority minority patient population in center care is even worse.  Plain and simple, it's criminal how dialysis providers are able to get away with such substandard care.  To be fair, good, incenter care can be found in the U.S.  Unfortunately, it is the small exception.

With my rant out of the way (-; , I would like to offer a bit of perspective.  While definitely in the minority, you are not an anomaly.  Of the 400,000+ dialysis patients in the U.S., less than 1% are IHD members and fewer than that actually post on the message boards.  The vast majority of those who are taking control of their treatment and doing well are moving on with their lives.  They either don't have the time to be here - because like yourself, they're juggling treatment, work and a social life - or just flat out choose not to participate. 

I hope your Mom works out as a donor.  While I'm sure you understand transplantation is not a cure, it can allow for a more normal way of life.   

PS - I'll have my Long Island Tea tomorrow night and give a toast to you.  (-:

So as I continue along in my reading here and elsewhere, there is a continuing theme that just irks me to no end.  It's the theme of "you're in ESRD, which means you are helpless and must rely on others".  Along with another related theme of "if you choose to be on in-center dialysis, you *will* be sick and disabled and not well". 

And for those who say that I should start a different modality, please save your typing.  My mom is currently being tested to donate and I have another live donor in the wings as well.  I prefer incenter D as a stopgap until I know that I have no live donors left to be tested.  At that point, I'll switch to NxStage. 

What is it about ESRD that makes people assume we automatically become helpless invalids?  I totally understand that I may be an anomaly - but gosh dang it, give me some credit, already.

If you've made it this far, thanks for reading and have a drink on me.   

[boswife]

I guess we lucked out at our centers.  We loved the staff. They were good to us and i miss them. I miss my friends (patients) that i would talk to outside of treatment room too     That said, hubby missed ME (ok, and i him  )  so we brought it home    So, in my/our opnion,  centers CAN be good, you just may need a closer watch on some more than others??   It seems that there are huge differences in centers, treatment, and care and for what ever reasons, we all need to do what we need to do.  Im happy 'caring' for my hubby others really dislike it. 

[MooseMom]

I agree with PatDowns in that your chances of getting good care in center increase if you can aggressively self advocate.  But no one should have to.  No patient should ever have to worry that they are getting substandard care.  And how would a patient even know? It is a sin that any patient would haave to worry that money is the biggest factor in how good their dialysis is.

I suspect that the driving force behind becoming educated about your treatment and self advocacy is a deep but unspoken distrust in all dialysis providers, this fundamental suspicion that your best interests and your wellbeing are ot at the top of their list of priorities.

[Bajanne]

This infantizing of patients is part and parcel of the medical setup.  You just need to let them know that you know what is going on.  It can be very frustrating when you at 61, post-graduate, with all your faculties, holding down two jobs (one an instructor in a Community College) are treated like a 2 yr old!

[cattlekid]

And I get irritated at some of the feedback I've gotten that I should be on some other modality other than incenter D.  Well, I don't plan on being on D for much more than a few months unless my living donors don't pan out.  So why should I upheave my life and home to start some other modality when for 12 hours a week, I can go to a center less than a mile from my house, get done what needs to get done while working from the center and then have the rest of my days free?  Doesn't make sense to me at this juncture.  But I've gotten the feedback that I am doing myself a disservice to stay incenter.  I don't think that's fair either.

"if you choose to be on in-center dialysis, you *will* be sick and disabled and not well". 

I get irritated at the lack of balance to this.  It's that one-size-fits all approach that just makes my teeth grind.  Everyone has different experiences with D and the different modalities.  I hear an implied "Get a transplant" in that, as if having a transplant waves a magic wand and cures all your health issues.  Ummm, not always.  (Wanna see proof?  I've still got visible intestines because of my complications.  Or check into Otto's transplant story.)  I know people on D who continue to work full time, too.  (Take bow, Kitkat, Zach, and all the others who manage this.)  I did do better on home hemo physically, but I had several at my center who tried and just couldn't take it because of the stress of having to do it without professional back-up.

[rsudock]

This infantizing of patients is part and parcel of the medical setup.  You just need to let them know that you know what is going on.  It can be very frustrating when you at 61, post-graduate, with all your faculties, holding down two jobs (one an instructor in a Community College) are treated like a 2 yr old!

I can relate to this as well. Once a dialysis tech said to me, "OMG you have a master's degree?" Like she was so surprised that I was educated. I felt like saying just b/c I am on D doesn't mean I am some ignorant uneducated fool!

My 11 months of dialysis left me very wary of dialysis centers. No one is being advocates for the patients at all. These healthy people treat us like we are all too stupid or too lazy to waste time dealing with us.

I would talk to patients all the time about different modalities of D and how to get on the transplant list. It amazed me how most people had no idea about NxStage or Nocturnal dialysis. One younger guy has been on D for 13 years. I told him , "Frankie if you were on the transplant waiting list, you would've had a kidney by now!!"

I am going to go back to my dialysis unit and see if I can help them start a nocturnal program for my friends....

[MooseMom]

cattlekid, I know you are annoyed with suggestions that you look into other modalities; I understand your reasons for wanting to remain in-center for the time being.  You shouldn't be obligated to explain your reasoning, but have you done so?  Do they understand why you've chosen the modality you have chosen?  If they can't understand your explanation, well, that's too bad for them.

On the other hand, at least they DO tell you about other modalities!  A lot of centers don't even do that!  Like rsudock just posted, it's amazing how many people have no idea that other modalities exist.  So, at least at your center, there's that.  At least you know that if your donors don't pan out, you will have the option of getting optimal dialysis at home if you so choose. 

[cattlekid]

I probably should not have been so circumspect.  It's here on these boards that I get the distinct impression that I am somehow shortchanging myself by sticking with incenter D.  I think we should all respect each other's choices for the modality that they have selected. 

My clinic, on the other hand, would love nothing more for me to stay on incenter D because they can keep the $2100 per week they are getting from my insurance company.  They did make me watch a video when I first started about the different modalities, but that was about it.  Like I said in a previous post, when I mentioned NxStage, they just about flipped out.

cattlekid, I know you are annoyed with suggestions that you look into other modalities; I understand your reasons for wanting to remain in-center for the time being.  You shouldn't be obligated to explain your reasoning, but have you done so?  Do they understand why you've chosen the modality you have chosen?  If they can't understand your explanation, well, that's too bad for them.

On the other hand, at least they DO tell you about other modalities!  A lot of centers don't even do that!  Like rsudock just posted, it's amazing how many people have no idea that other modalities exist.  So, at least at your center, there's that.  At least you know that if your donors don't pan out, you will have the option of getting optimal dialysis at home if you so choose.

[lmunchkin]

Cattlekid, I think it is great that you are capable of choosing what ever you want to do.  If you want to stay In-Center than do and don't let anyone change your mind. The point that I would like to make is that I have been 2 two different In-Centers, "the ones that our Insurance would cover".  We changed insurance company, so husband went to another center.  The first center was very accomodating, plus his nephrologist was the Director of this Unit, but when we had to change Insurance company they would not pay for that center, so he went to another and they were "bad" only in the sense of keeping me informed of his care. I knew nothing about what they were doing to him!

For a spouse, that is very frustrating, because hubby is not always aware of what is going on with him. You have to understand that this is a wonderful man that has been run through the ringer!  And really does not care anymore!  I do all the worrying and caring enough for us both!

When I spoke to his neph. about the way they were leaving me out of things, she said "have you thought about home-hemo" because she knew I had done PD on him for many years.  I looked at her like, lady, why didnt you tell me this back when he left!  She said she wanted to be sure that this NxStage was a good product before she would recommend it. 

She went to some meeting somewhere where she was then convinced.  She was big on it then.  That is one thing I can say about his nephrologist, she is a caring person.  She doesnt jump unless she is absolutely sure that it is good for her patients.

And I probably shouldn't say this, but she allowed my husband to dialysize in the clinic for three months without insurance pay till we could get into this other one. "They apparently did not have an opening" at the time, if you want me to believe that!!!
At anyrate, my point is, we were never told of this NxStage. Once neph. told me, I immediately studied about it online.  Hubby was pumped! I was pumped!  All was right with the world.

Jay and I have always been "HOME" people. We both, when that time comes, want to be at home when our lives end. We don't mind socialising, but we are not "Social" people.  Yes I too, miss some of the lovely people (Patients & their Family) at the clinics.  I still keep in touch with many of them, but to go back, I will fight tooth and nail to keep from happening!  That is us!  That may not be you! 

If I have made you feel like you need to pick my kind of modality, then Im sorry, that is not my intent!  But I will PUSH NxStage cause he is doing sooooh much better.  He hasn't had to be Hospitalized in a year now!  That is a Godsend, cause before he was constantly in & out for all different reasons!  I never knew whether he would come through or not.  It is down right frightening at times for me! 

But I also know that In-Center's are there for a purpose and some really do the best that they can possibly do for those with Kidney disease.  No one can convience me, that all nurses & techs are just there to get money and it is just a job.  That is simply not true.  There are some excellent Dialysis Nurses in those clinics!  It's just the rules & regulations of the unit that "Bite".

Sorry about this prolong post.  Im babbling, AGAIN!

lmunchkin     

[jbeany]

I probably should not have been so circumspect.  It's here on these boards that I get the distinct impression that I am somehow shortchanging myself by sticking with incenter D.  I think we should all respect each other's choices for the modality that they have selected. 

Sorry if we're giving that impression, cattlekid!  We do our best to respect others' choices. 
We're more than happy to point out that PD can be a great way to start for as long as it lasts - unless you're diabetic and you aren't interested in gaining 100 pounds a year - or if swimming is a huge part of your lifestyle.  We've had lots of discussions about the pros and cons of transplants vs. long term D and why some don't want the surgery. (Cancer risks, difficulty with anesthesia, etc.) Home D can be a great option, too, but only if you are capable of the organization, training, and have the space and (sometimes!) help needed to deal with it.  Nocturnal works well too - unless being away from your house/family/spouse for odd hours doesn't work for you either - or it just isn't offered where you live. 

We tend to get pushy about other options because so many of our new members don't know a thing about them.  (I hadn't heard so much as a whisper about NxStage until IHD's founder started talking about it.) 

If we're not pushing the options on here, then where are the members in bad centers going to hear about them?  If you are hearing "Why are you still in-center?"  do try and remember that the meta message to that is "Do you know what your choices are?"

[MooseMom]

I apologize most profusely if I EVER gave the impression that I think you are "short-changing" yourself by going incenter!  First of all, you have to live with whichever modality you choose.  It's YOUR life, YOUR decision.  No one here on IHD is living your life, so frankly, our opinions are largely irrelevant!

The gripe isn't about WHERE you get your treatments.  The gripe isn't about clinics per se.  The gripe is about HOW MUCH dialysis you get, and the fact is that you can get more dialysis at home.  Now, if it were possible to get MORE dialysis in a clinic, especially a clinic where you can self-cannulate if you want, well, that would be wonderful!  If your clinic happens to offer nocturnal hemo, that's terrific! 

As long as you feel you are getting all the information you need to make the best decision for yourself, and as long as you are feeling well and your body is being well-taken care of so that it will be in the best shape possible for surgery and the post-transplantation rigors, then the opinions of the rest of us are not terribly important!

You're not stupid.  You know what you're doing, and why.  We support you in whichever decision you make for yourself.  You've decided to stay incenter for the foreseeable future, and we will unflinchingly give you all the support you wish!!

(I learned about NxStage from IHD, certainly not from my neph!)

[kitkatz]

I have been in center for twelve years now, going on thirteen in November.  I figured out the best patient is an educated patient.  Since finding things out for myself happened early on, 4th day of diagnosis, I know my options and can discuss them with my providers, docs, social workers and dietician. It was like pulling teeth to get answers from the docs when this went down. I had to request information from patient services myself.  Then they asked me "Haven't you gotten our welcome packet yet?" . I was thrilled to say the least    Welcome to dialysis and kidney disease.  I fired the doctor that would not give me information while I was in the hospital.  He was an idiot and I told him so.  He called a family meeting with my husband so he could coerce me into the treatment he wanted me to do. He did not educate me on his treatments and it sounded like quackery to me.  I read everything patient services gave me and my sister went on line and ordered some videas and information for me.  Several years later, IHD.com become a primary resource.