Gerald Slept Here!

[Gerald Lively]

One effect of this troublesome time, has been the loss of my sense of humor.  If this transfer works I may be back with the jokes.  Perhaps the RAI dialysis center thinks I am a buffoon, perhaps they really are negligent service providers.

Disconnecting will not be easy but I agree that how my doctor reacts is key.  In any case, I’m outta there as soon as possible.  They have driven me to the edge and it is very dark on the other side.

Thanks for the positive reiforcement.

gl

[willowtreewren]

Oh, Gerald,

You really, really do need your sense of humor. 

I hope you can get this resolved ASAP. Not only for you, but I miss your lively banter. I'll know things are looking up when that returns.

Aleta

[natnnnat]

Wishing you a cool and determined head GL and a light at the end of the tunnel.  No train jokes allowed.  Hoping you encounter someone generous enough to help and maybe even an entire clinic full of good people.  I know there is an idiot everywhere you go, but you need the ratio of idiot:non idiot to shift in your favour.
Its not easy to be the best person you can be (cool headed, calm, reasonable, helpful, amusing) even when you're well, let alone when you're dialysing.  I wish you inspiration, determination, clarity, and opportunity.

[MooseMom]

While poor behaviour shouldn't be "condoned", I do think that a new dialysis patient should be treated with the utmost compassion.  I suspect that too many clinic staff just do not know how devastating starting dialysis can be.  Maybe they don't have either the imagination nor the humanity to be able to put themselves in your shoes.  You would think that people who work with dialysis patients would know better, but maybe the job just sucks the empathy out of them, leaving them as dry husks without any feeling at all.

This probably sounds naive, but if I were a social worker or a tech or manager in a dialysis clinic, and if I had a new patient who seemed this distraught and unhappy, it wouldn't occur to me to chastise him/her.  I don't understand why these people don't see your behaviour as a sign that they're crap.  You are not expressing your displeasure because you have nothing better to do.

We patients do have to be our own best advocates, and that is not always easy to do when you are ill, frustrated and frightened, not to mention depressed.  It is in our best interests to present our complaints in a logical, diplomatic manner, but it's not always possible to do that.  When you feel so out of control of your life, it is easy to resent those who you perceive have wrested that control from you.  This is the point that natnnnat is making, and she is right.

Keep us informed on how things are going.  Stay Calm and Carry On.

[natnnnat]

I have been negotiating a complaint with the health system in my state ever since my mother in law died.  Its unbelievably frustrating and depressing, and I can't actually trust myself to talk to "them" face to face, because I believe if I did, that I would rapidly morph into an hysterical, screaming, crying, punching, name-calling banshee.  I would probably enjoy it too.  But it wouldn't be good for the complaint process.  I feel like I have to be as rational as possible, and find ways to "prove" that my family "suffered" as a result of actions on the part of health system employees.  The irony is just bizarre.   So I've made all my interactions written, and made them write back.  Maybe this isn't the best way to go, but its the only way I could proceed with the amount of calm wisdom I have at my disposal.

In particular, regarding one's interactions with health systems, I think that patients and families are perpetually on the back foot, because you don't want to get them off side.  Well, I don't at any rate.  When my mother in law was still alive, I desperately tried to keep the mounting frustration of the family from showing to nurses and doctors, because Marge needed all the care she could get, and they already, quite clearly thought that we were major pains in the ***.  If they knew we were all ready to kill them, they would probably have given Marge even worse treatment.  So I never told them off to their faces.  In a way, I envy you for letting your feelings show.  If I was the patient, maybe I would be less careful and more demonstrative.

And though it makes sense in some ways to say "I am the consumer, do as I want", in fact patients are not like consumers, because patients are sometimes ill, unconscious, have short timelines, need urgent care, or don't have the time, money, energy or opportunity to shop around.  They can't always just take their money elsewhere.

[natnnnat]

Gregory came in to see what I was up to in here.  I read my post and MM's to him.  He said, he's seen people "go off" in the dialysis clinic, and then they got "the treatment".  This is where attention becomes lessened, one moves slower in the queue, one is seen last, etc etc.  It probably isn't helping to tell you that they used to call it "the treatment".  The way he describes his old clinic sounds like a novel by Kafka sometimes. His tactic was to learn how to do his entire treatment himself, be very self sufficient, and be co-operative and amusing.  But I also recall (he's wandered off now, worrying because he reckons his kidney has blown a gasket or the rings are leaking and he wont be off dialysis for much longer).. I recall that when he started dialysis, they told him he was an "angry young man".  But later he must have made friends with them somehow, and he is still on good terms with one of the nurses from those days.  So that is why I hoped for you to find the non-idiots somewhere in all this mess, and to recover your usual sense of humour and maybe cool head.  Maybe in your new clinic, but if all else fails, in this horrible one you are in now, until you get plan b sorted out.  You'll need a strong nerve and a cool head for some time now. 

[Gerald Lively]

Met with DaVita today.  Will be changing dialysis service providers by the end of the week.  Goodbye RAI.

[willowtreewren]

That's good news, Gerald! (and I love the picture! You are quite the handsome guy!)

Aleta

[cattlekid]

Awesome!  I am so excited.  If there is any issue with the DaVita clinic and getting up and running with NxStage, my offer still stands to put you in touch with the NxStage patient advocate.

[Gerald Lively]

Eeeeeeeaaaaahyahooooooooo.  Wowie Zowie!  Hot banana sundae with a cherry on top (not really)!!!!!!!!!!!!!!  Yeeeeowie by goooooollllleeee!

[natnnnat]

Eeeeeeeaaaaahyahooooooooo.  Wowie Zowie!  Hot banana sundae with a cherry on top (not really)!!!!!!!!!!!!!!  Yeeeeowie by goooooollllleeee!

Honk! Trying to imagine the dignified gentleman in the picture carrying on like yosemite sam.  Failing.

[ToddB0130]

Congrats Gerald.  Your home hemo adventure with NxStage is about to begin !!  Keep us all posted.

[willowtreewren]

Eeeeeeeaaaaahyahooooooooo.  Wowie Zowie!  Hot banana sundae with a cherry on top (not really)!!!!!!!!!!!!!!  Yeeeeowie by goooooollllleeee!

Honk! Trying to imagine the dignified gentleman in the picture carrying on like yosemite sam.  Failing.

 

Don't ya just love the exuberance! 

Aleta

[Gerald Lively]

As many of you know, I have had a falling out with my dialysis service, RAI.  During the six months there, they have made two critical mistakes, which I presume were due to inattention.  Yes, twice they took out more than 6 kilos of water during a single dialysis session.  And yes, the staff did not undertake measures to correct what I have identified as unprofessional.  It has been up to me to ask the key questions during the hookup.  I am not a doctor.

The other game in town is DaVita.  I toured their facility and it seems sterile compared to RAI, a good thing.  I have talked with the person who trains home dialysis patients, they social worker and I have asked questions as we roamed through the facility.  It all seems to be the best option available at this moment.

Our plan is to take dialysis  until my fistula develops, then go through the required training, then I will be home.  Unless something better comes along.  Perhaps my fistula will be so good that I could drive myself to the center and back, thereby freeing my wife’s time.  Who knows?

My concerns per the confrontational meetings at RAI, was patient care.  Through that lens I surveyed DaVita.  There are, no doubt, other aspects that may be of concern.  I have been searching this forum for comments on DaVita’s patient care.  I have read much on their corporate practices and those comments were universally negative.  A few have questioned their patient care practices.

Thursday will be my last day at RAI.  Those people have cautioned me about DaVita without being specific.  This may be organization jealousy.  I don’t know.  I would appreciate any comments on DaVita patient care you might have - - good or bad.  Give me a clue on what to watch out for, anything that might be enlightening.

Gerald Lively

[MooseMom]

Gerald, I've been reading posts for a long time from IHD members who are Davita patients.  Some have had bad experiences while some have had good ones.  I would hate to condemn all clinics affiliated with the big providers, but studies do show that too many clinics put profit above patient care.  However, as you have learned, so often it is the prevailing attitude of the nurses/techs/managers that dictate how a specific clinic is run, so you are best placed to see how THIS particular clinic is run.  If the manager is efficient and has excellent patient care as his/her priority, then you will probably be much better off than if you were in a not-for-profit clinic run by an idiot.

My mother was a patient at a Davita clinic in Houston.  I know she liked the techs who worked with her.  She has family living in cities from California to Florida, so being able to travel was important to her.  She had a house in Mississippi, and she'd come up here to Chicagoland to visit me at least once a year.  Her social worker was quite efficient in making arrangements for treatments away from home.

Her clinic brought in a guy from NYC to set up an inclinic nocturnal practice, and he had approached my mom to see if she might be interested.  I encouraged her to really think about it as I was just then learning more about optimal dialysis.  She asked the head nurse about it, and SHE nixed the idea; I never knew why, and my mother wasn't the kind of patient to ask questions about her treatment.  She just did as she was told.  I don't know if that was a good thing or a bad thing.  But I am very curious to know why it was unilaterally decided that my mother could not have nocturnal at the clinic.

Gerald, this is your opportunity to start with a clean slate.  Do try to go into this with a cooperative mindset, and try to see these people as your team.  You are the head coach, calling the plays, and your neph is your offensive coordinator.  He is the one to tell you what play would have the best chance of success, but ultimately, it is YOUR team and YOUR responsibility to take all advice and to make the best choice.  The clinic staff are just the members of your team; they are the ones who are there to help you reach your goal...victory over immediate death by ESRD.  They are not supposed to be the opposition.

If it is home hemo you eventually choose, do what you have to do to get trained and then get out.  Try not to be sidetracked by the incidentals unless you ultimately decide to stay in clinic.  Of course, patient safety is not a mere "incidental", but you know what I mean.  Don't sweat the small stuff. 

BTW, my mother just about always drove herself to and from dialysis up until she passed away at 81.

In summary, I'd advise you to keep your eyes open along with your mind. 

Now that you have toured the Davita clinic, what impressions did you come away with?  How did the people seem?  Did they seem nice?  I toured a facility near me, entirely spontaneously, and the social worker took the time to talk to me.  He was very enthusiastic about home hemo, and he was thrilled that I had already looked into it.  He recommended that I take a look at Dr. Agar's site, Home Dialysis Central, and he was very impressed when I told him I had already seen it.  He was generally a very nice, upbeat man who encouraged self care for his patients.  It lead me to believe that the social worker can provide a real good clue to how patient centered a particular clinic strives to be.  What was the social worker at this new Davita clinic like?
If you

[Gerald Lively]

DaVita has a nice sign out on the street.

Okay, so that isn’t on the evaluation criteria.  It was the Social Worker who gave us the information about DaVita and conducted the tour.  I noticed that the patient/help ratio seemed to be 3:1.  The facility was clean and organized.  So it seemed. 

In making this move I have to change Doctors and I have yet to meet with the new Doctor.  Will do so Friday when we meet with staff for the purpose of admission.  My old Doctor, the one at RAI, is the person who said, “We are better Nephrologists than the Doctors at DaVita.” 

You sound like my wife when she says, “Now, be good.  Don’t go in there and pick a fight.”  Well, consider this;  I never complain unless I perceive a wrong. 

So, nano, nano!

gl

[MooseMom]

You sound like my wife when she says, “Now, be good.  Don’t go in there and pick a fight.”  Well, consider this;  I never complain unless I perceive a wrong.

Ah, now this is a very telling statement.  You never complain unless you "perceive" a wrong.  Are you claiming that all of your perceptions are truth?  Can you not see that if you are tired, sick, angry and frustrated, then your "perceptions" might be way off?

You SHOULD complain if there IS a wrong.  But make sure there really IS a wrong...

Your wife is a wise woman.

[Gerald Lively]

As Stephen Hawkings recently said, “We will never understand women,” wife included.

All of life experiences and training has been aimed at finding the hole in the doughnut.  “Once a problem is well identified, it is half resolved.”  While I admit that I act at times, like a bull in a china shop, I prefer direct answers to direct questions.  Be vague and my suspicions are aroused.  I fail to see how anyone can go through life without a survey of the future (immediate or otherwise) to identify potential pitfalls.  Yep, I am not a trusting fellow.  I have been betrayed by everyone I have ever trusted at least once.  Some get more than one chance but not many.

In accordance with the patient’s bill of rights per Medicare, RAI failed me in the following areas:

1.    I was not informed of my rights and responsibilities.
2.    I was not treated with respect.
3.    My right to medical record privacy was violated.
4.    No one informed me of home dialysis for those with a chest catheter.
5.    I have seen the social worker only once in six months.
6.    Test results were not immediately available until I complained.
7.    I should have been informed at each and every hook-up about how much water will be removed.

If this list does not make a person a bit skeptical about dialysis providers, then nothing will.  I have exhausted my list of phone inquiries, internet searches and I have read all of the documents I could find so that I will be the best informed patient to enter the halls of DaVita.  Trust no one and no one will deceive.

I have a never ending need for input.

gl

[MooseMom]

You are now a much more experienced patient than you were 3 months ago.  Make your experience work for you.

Take this list of complaints with you to Davita.  Tell them courteously but pointedly that these were the areas in which you felt RAI was lacking, and what will Davita do differently?  Give them the opportunity to address your concerns now rather than later.  The complaints you listed are not difficult to resolve.

Ask how available the social worker will be. 

Information really is power.  If I were you, I'd be wary of clinics where they discourage patient information and education.  If your clinic encourages self-care and is happy to give you all requested answers to your questions regarding your treatment, then you know you will be with people who value your judgment and who trust that you are listening to your own body.

Try not to go into this expecting failure and dismay because if you do, you may face a self-fulfilling prophecy.  You're a smart man, and I am sure you will find a way to make these people work FOR you, not against you.

[ToddB0130]

Also Gerald --- make sure Davita knows your needs/requirements for handling your special eye and respiratory needs as well.  It will be helpful for you to make sure they're working to accomodate your needs from the first visit and from there,  they should be able to hopefully have their 'Gerald space' once you've got your routine scheduled.  GOOD LUCK.

[Gerald Lively]

You guys don’t give me enough credit.  Friday I will meet the staff at DaVita and that includes the Doctor, Staff Director and the Social Worker and I expect others to be there.  At that time I will be asking my questions about service.  Once agreed, I will become the lighter side of Gerald.  There is a season for all things; a time to learn, a time to be calm, and a time to see the door of opportunity.  This is my season for relaxation and a capitulation of all things to my spouse.  I listen more than I don’t.  I try not to live in the past even if the future is short.  Yet, I need to spread the straw evenly before I sleep.

Gerald

PS:  Todd – why do you have my photo as your avatar?

[Gerald Lively]

Go placidly amidst the noise and haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story.

Avoid loud and aggressive persons, they are vexations to the spirit. If you compare yourself with others, you may become vain or bitter; for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs; for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.

Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here.

And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul. With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be cheerful.

[MooseMom]

You guys don’t give me enough credit.

I can't speak for others, but as for myself, no, quite the opposite.  I give you all the credit in the world.  I know that underneath the understandable frustration and even anger, there is a very smart and capable man who knows how to get what he wants.

[natnnnat]

...underneath the understandable frustration and even anger, there is a very smart and capable man who knows how to get what he wants.

And underneath the grey top is a rippling set of greasy sixpacks, according to your remark about Todd's avatar.
Re the impending new clinic:  Hooray!  Here's to a gentle and easy ride.  Go you good thing.  etc.

[JustDee]

Desiderata....truer words have not been written.  "As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story.".....easy to read, hard to follow.  I am an Old Hippie Woman, I believe in peace and Love, I believe in tolerance, I believe that all should be civil and kind spirited,..........and YET when people are apathetic, mean spirited or just hateful I have a small teeny tiny tendency of being a bit Uncivil (hubby says I'm BRUSK).  Talking in a not quiet voice I tend to give people a piece of my mind that they didn't request.  I believe in Sunshine and Moonbeams but when folks are mean-spirited or have attitudes that provoke homicidal tendencies I sit not quietly in the corner thinking of rainbows and puppies but rather let my tongue out for a good wagging.  People should be nice, people that are paid to take care of people should be extra nice, people that take care of sick people need to be empathetic, patient and helpful or find another job.  This is our Health that we're fighting for and these doctors/nurses/aids/whatever need to help us in the fight or get the heck out of the way....impeding our progress could be detrimental to their Health.  Gerald, I am not yet on Dialysis, and I plan to go the PD route...after reading all of your posts I'm fairly sure that Dialysis Centers are not the place for me.  I truly hope you find happiness and Sunshine in your new Center....and hurry up and get going on that Home Dialysis.