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Author Topic: "The BINDER Force Awakens"  (Read 2923 times)
turtley
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« on: January 24, 2016, 07:34:50 AM »

Protein, the Monkey,  a BIG  hit  this week  starring as Darth Vader.  Pts.,staff, MD loved it.   They really got the message that taking binders  is like tasering phosphorus away.  Of course they  got a treat to go with it.
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PatDowns
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Celebrating 60th B'Day. 12/26/15

« Reply #1 on: January 24, 2016, 08:50:55 AM »


 Of course they  got a treat to go with it.


I'm sure you know that you're really pushing those of us who strongly believe you're infantilizing patients who are adults.  Do you work in a clinic with the overwhelming number of patients are either Black Americans or Hispanics?  While, demographics probably shows their FORMAL education level is below the national average.  However, that doesn't mean you have to treat them like children to explain the importance of taking binders or not skipping treatments or whatever concept you're trying to get across.  That's disrespectful and patronizing at best and maybe even exhibiting an ingrained racist attitude at the worst.     

EDIT:  As a patient advocate, this is how I try to help those who are having a problem with remembering to take their binders.  First I'll say I'm sure you know the consequences of not taking them.  I'll even go over the physical outcomes in a way that they can immediately relate to - like the horrible itching - and then to the bone disease and potential of having to be cut on in the neck area to remove their parathyroid glands. Then I'll explain what those are and how they relate to kidney failure.    Then, I'll get to the heart of the problem.

I'll ask, what's keeping them from taking their binders?  I'll even offer up a few suggestions so maybe they won't be as hesitant to open up.  If they have to rely on government financial support and/or disability payments, I'll say I know many of the binders are pretty expensive., are you having a hard time paying your co-pay?  Sometimes, patients in this situation it comes down to either paying an important bill (gas/electric/water)  or their meds.  If you're faced with having your lights immediately turned off or the outcome of not taking binders, what would you do?  And, if this is the problem, I would suggest talking with the social worker who can probably help find some help with subsidizing utility bills or the specific binder being used.  Worst case, get with the RD and see if there can be a change to a less expensive binder.

If they're taking Renvela, it's not uncommon to hear the pills are so big, they have to take so many with each meal, and "waste" a lot of fluids just to take them.  I'll first suggest breaking in half and taking with something they like to drink instead of water. If I see that's not getting a good reaction, I'll then suggest talking to the RD to see if there can be a switch in binder.   I'll mention I take Fosrenol which is chewable.   I'll also be honest and say it's kind of chalky tasting, but I don't usually have to take more than one with each meal and I don't have to drink anything to take them.  That gets their attention.

Then there are folks who say they are sometimes unexpectedly away from home at meal times and don't have binders with them.  For them I'll suggest keeping a pill container small enough to keep a few binders in it while easily fitting in their pants pocket (or purse for women).  If they are working a desk job, I'll suggest also keeping some pills in their desk drawer or in the glove compartment of their car if working outside an office..  And finally, if they're quite social and always out visiting with friends/relatives,  to ask them if it would be OK to leave a few pills in their medicine cabinets.  I'll tell them, if need be, to explain in their own way the importance of the binders.   If cost isn't a problem with spreading out the supply a bit, this is a great idea.

These are the main reasons I hear for not taking binders.  I'm sure there are others.  However, it is up to you as an RD in coordination with the SW to figure out what's going on in a way that that best relates to the individual.  Nothing beats one on one interaction.  Dignity matters.

Hope this gives you useful prospective from a 35+ year esrd vet. - PatDowns
« Last Edit: January 24, 2016, 10:06:37 AM by PatDowns » Logged

Frank Moiger aka (previously) NoahVale and now PatDowns, the name originally chosen by a good dialysis mate who died in 12/2013.  I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
Charlie B53
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« Reply #2 on: January 24, 2016, 10:12:48 AM »


I don't remember who is was that was quoted as saying

"you cannot please all the people all of the time."

Nor do I even remember the rest of the one   "For the greater good..."

We do not know the patient base where the monkey is being used.

Granted, it can seem quite infantile to some, but not all

You have to admit it can be a very tough job to get people to listen, and even harder to get them to actually follow directions.

If the monkey is helpful in improving some patients, then it can be considered a good thing for those patients.

You make valid suggestions, and they also may help, with some patients.

I don't think I would be a good candidate for the job.

Take Care,

Charlie B53
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PatDowns
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Celebrating 60th B'Day. 12/26/15

« Reply #3 on: January 24, 2016, 10:32:03 AM »


I don't remember who is was that was quoted as saying

"you cannot please all the people all of the time."


Ricky Nelson - Garden party

But it's all right now
I learned my lesson well
You see, ya can't please everyone
So ya got to please yourself

or most likely,

John Lydgate: “You can please some of the people all of the time, you can please all of the people some of the time, but you can’t please all of the people all of the time”.”

Quote

Nor do I even remember the rest of the one   "For the greater good..."


Karl Marx and the Communist Manifesto


Quote

We do not know the patient base where the monkey is being used.


You don't know enough about esrd demographics for in center patients, especially in the South and larger cities across the country.  Do the research.

Quote

You have to admit it can be a very tough job to get people to listen, and even harder to get them to actually follow directions.

If the monkey is helpful in improving some patients, then it can be considered a good thing for those patients.

You make valid suggestions, and they also may help, with some patients.


Disagree.  Not as long as a patient is willing to accept his diagnosis of kidney failure (and some stay in denial).  Appealing to the lowest common denominator is the lazy way, demeaning and an almost guarantee to never get those in denial to come around.  Renal professionals would do good to follow the principle of the Serenity Prayer in their professional lives...

G-d, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.
  ~  Reinhold Niebuhr

Quote

I don't think I would be a good candidate for the job.



An honest self-evaluation!

« Last Edit: January 25, 2016, 08:53:00 AM by PatDowns » Logged

Frank Moiger aka (previously) NoahVale and now PatDowns, the name originally chosen by a good dialysis mate who died in 12/2013.  I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
nursey66
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« Reply #4 on: January 24, 2016, 05:35:12 PM »

Re Binders ! My hubby refused to take them due to the outrageous cost !  1550 dollars for a 1 month supply , his entire SS check. Couldn't qualify for extra help because when the would add my SS and his together the income was TOO high. !
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Fabkiwi06
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WWW
« Reply #5 on: March 31, 2016, 11:09:56 PM »

I like the monkey. I'm a fan of the light hearted ways our staff approaches this illness. Life is far too short and uncertain to not have a smile.
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surprise kidney failure - oct. 2015
emergency hemo - oct. 2015
switched to pd - dec. 2015
transplant list - apr. 2016
Charlie B53
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« Reply #6 on: April 01, 2016, 05:22:37 AM »

Re Binders ! My hubby refused to take them due to the outrageous cost !  1550 dollars for a 1 month supply , his entire SS check. Couldn't qualify for extra help because when the would add my SS and his together the income was TOO high. !

Sometimes I get very frustrated at this laptop.  Evidentally my thumb gets too heavy and touches the touch pad, instantly moving the curser.  This can not just scramble whatever I've written, but someetimes sonehow it wipes out, erases, a whole paragraph and I have to start over.  Grrrrrrrrrrrrrr!

It is absurd that some medications cost do much that those of us on fixed incomes have to chose between taking the med or making the house payment and utilities.   There really is no way to do both, have a home and take our meds that the Dr's say we MUST have.

I have no solution for you.  I only want to let you know that you are NOT alone.   We could start our own Army if we could get organized.   It wouldn't be much of an Active Army as very many of us are unable to walk anywhere near a block, much less march on our nation's Capitol to demand Congress find an answer.

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SutureSelf
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Hey there!

« Reply #7 on: April 09, 2016, 05:14:26 AM »


It is absurd that some medications cost do much that those of us on fixed incomes have to chose between taking the med or making the house payment and utilities.   There really is no way to do both, have a home and take our meds that the Dr's say we MUST have....


I've noticed in numerous threads you have posted about being on a fixed income and always having to make a choice between making house/utility payments and getting expensive meds or something else that could help your quality of life.  Also from past postings I know your wife works.  Even with her income added to your (I assume) monthly SSI, your total household income might still be in a range where you can qualify for assistance.

Have you talked with your dialysis center social worker or dietitian about assistance programs offered by the pharmaceutical companies that make Fosrenol and Renvela, two of the most widely used higher priced phosphorous binders?  If you are getting your meds through a Medicare part D plan instead of from your wife's insurance, you still might qualify for extra assistance and a lower price.

Here are a couple of other resources in Missouri that base financial assistance on total household income and whether someone has a disability:


Many Missouri residents need help but do not know what services are available. The Missouri Pre-Eligibility Tool can be used to determine if you may be eligible to receive the following Missouri benefits: Child Care Subsidy (CC), Food Stamps (FS), Temporary Assistance (TA), MO HealthNet for the Aged, Blind and Disabled (MHABD) and MO HealthNet for Families and Children (MAGI).

The Missouri Pre-Eligibility Tool is not an application. At the end of the pre-eligibility tool, an application(s) for services can be made by completing, printing, and mailing the application(s) to your Family Support Division local office.

https://dssapp3.dss.mo.gov/fmwBenefitCenter/PreEligibilityTool.aspx

and

The Missouri Low Income Home Energy Assistance Program (LIHEAP) has two components: Energy Assistance/Regular Heating (EA) and Energy Crisis Intervention Program (ECIP). EA is designed to provide financial assistance to help pay heating bills for Missourians during the months of October, November, December, January, February, and March. Eligibility requirements for EA are based on income, household size, available resources and responsibility for payment of home heating costs. Eligibility for EA may also qualify individuals for additional financial assistance through ECIP.

http://dss.mo.gov/fsd/liheap.htm

Plus, for medications there is this discount program for those without a medication component to their health insurance, or of they do, these prices may be lower:

http://www.helprx.info/

Hope you can find some additional resources through these programs so you don't need to be in an "either/or" situation, especially when it comes to medications.

- SutureSelf


 
« Last Edit: April 09, 2016, 05:15:44 AM by SutureSelf » Logged

I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
Michael Murphy
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« Reply #8 on: April 09, 2016, 05:52:26 AM »

I assume you are on Medicare part d for prescriptions. There is a other solution that may seem more costly but may actually save some people money.  There is a app for smart phone called Goodrx it finds the lowest price near the user and provides a coupon. If you buy your drugs with the coupon it may or may not save you money but what it will do is.pull the cost away from part d and save the part d money for more expensive drugs.  Even without Goodrx access the same thing can be accomplished by buying common drugs from pharmacies that have a discount plan such as Wallmart.  I
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Charlie B53
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« Reply #9 on: April 09, 2016, 03:39:35 PM »



Fortunate for me, I am a Veteran with a Service-Connected Disability.   Those few meds I do have to pay for my co-pay is only $8.   I do however have a Part D plan that has a 90 day Zero co-pay.  Enough of my maint meds are on that plan that it is worthwhile to pay the $18 monthly premium.

Wife works only part-time.  Mostly for the Insurance which is currently better than Medicare and most all the Part B plans.

Do to our combined retirements, VA pension, Annuity, we are NOT eligible for any assistance anywhere.

I know we are not the only ones on fixed incomes, I was taking the liberty of explaining how burdensome high med costs can be for some people.

I will look into the heating assistance.  We pre-buy propane anywhere from $1500 up every year.  Coming up with that all at once doesn't happen easily.  I usually hock the title to my truck, then pay it off within the next year.  Mid-summer, do it again.  I love my Credit Union.  And I'm sure they love the interest I end up paying.

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