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Author Topic: Things for an RN not to say to a care partner  (Read 7590 times)
Simon Dog
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« on: September 29, 2015, 11:59:24 AM »
Things for a home care RN not to say to a semi-reluctant care partner:

- "90% of patients doing dialysis do it in-center"
- "In center is fine"
- "If in-center was bad, we wouldn't do it"

The first being heard from my RN; the last from my MD.

What I would prefer RNs say to care partners:

- "Yeah, in-center - we're stacking up the bodies like cordwood"
- "We actually see fewer adverse incidents at home than in-center"
- "If you go in center, you can get treated by a gen-you-whine high school graduate with 6 weeks of training"
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PaulBC
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« Reply #1 on: September 29, 2015, 12:18:39 PM »
I would have clicked "like" if I could and left it at that (but they don't have that feature).

So if I have a comment, it's just that medical professionals have a different mandate from patients and their care partners. Anyone who looks a little reluctant might be unreliable, and they don't want to apply pressure when there is an alternative. They also don't want to say that anyone is getting inferior care, though they probably should at least provide statistics on outcomes for different modalities instead of insisting that all are identical.

I think the bottom line is that you can't expect doctors and nurses to help you make the most difficult decisions. They should provide complete information, but any attempt at persuasion, say from semi-reluctant to cautiously enthusiastic, is something left to the people close to you.
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Angiepkd
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« Reply #2 on: September 29, 2015, 07:33:34 PM »
Wow.  My doc was insistent that I consider home hemo.  He told me the outcomes were better.  My nurse was very supportive and helpful.  Didn't experience anyone who thought in-center was the best option.  I am thankful for them, as they made me see I could do it.  They did not coerce or force me, but gave me some good things to research.
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
cattlekid
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« Reply #3 on: September 30, 2015, 08:27:58 AM »
One of the partners in my nephrologist's practice told me I was going to die if I started home hemo. 

I didn't think anything of her asinine statement since I knew she was part owner of the clinic I was leaving since they didn't offer home hemo. 

Quote from: Angiepkd on September 29, 2015, 07:33:34 PM
Wow.  My doc was insistent that I consider home hemo.  He told me the outcomes were better.  My nurse was very supportive and helpful.  Didn't experience anyone who thought in-center was the best option.  I am thankful for them, as they made me see I could do it.  They did not coerce or force me, but gave me some good things to research.
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Angiepkd
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« Reply #4 on: September 30, 2015, 08:53:33 PM »
Quote from: cattlekid on September 30, 2015, 08:27:58 AM
One of the partners in my nephrologist's practice told me I was going to die if I started home hemo. 

I didn't think anything of her asinine statement since I knew she was part owner of the clinic I was leaving since they didn't offer home hemo.

I can't imagine being told that!  I would be so ticked off!  My nephrology group owns several dialysis clinics that don't do home hemo, but they encouraged me anyway.  I guess I am very blessed to have such a good team.





Edited: Fixed quote tag error-kitkatz, Admin
« Last Edit: October 07, 2015, 10:39:10 PM by kitkatz » Logged
PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Simon Dog
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« Reply #5 on: October 01, 2015, 07:36:31 AM »
The Massachusetts CMR (regulations with the force of law) for dialysis clinics requires all clinics to either have a home treatment program or a referral arrangement with a clinic that does.

MDs willingness to offer home treatment varies considerably.   One of the new patients at my clinic was there because although his previous clinic offered home treatment, his MD did not think he was up to it and told him he'd not get that modality under her care.    My RN told me she has seen patients who were non-compliant in=clinic (missed treatments, arriving to late to get their full dose, etc.) become totally compliant once on the home program.

Off topic - Did nocturnal last night.  It was great not having to think about Dr. O's cautions about flogging the fistula when I turned the blood flow all the way up to 300.
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Rerun
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Going through life tied to a chair!
« Reply #6 on: October 02, 2015, 05:46:07 PM »
I love the DaVita Survey...  from 0 to 10, 10 being the most likely....   How likely are you to refer friends and family to DaVita....

Like it is Taco Bell or something.
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Sugarlump
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10 years on and off dialysis
« Reply #7 on: October 06, 2015, 12:03:17 PM »
Since finally getting home for dialysis in January, I have been so much better. I hated in-center dialysis with a passion. The small mindedness of the staff and their inability to be flexible,
I has so many battles. And not to mention the endless travel...
I trust my care partner far more than some of the nurses, especially with the needling and his ability to program my machine (UF rate) depending on my blood pressure.
He also responds a lot quicker to my urgent requests!!! Like cramp! Need saline! Take me off now! I need a cup of tea!!!!!
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Michael Murphy
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« Reply #8 on: October 06, 2015, 05:04:01 PM »
The thing I love about my center is that they staff with usually 4 nurses, 1 nurse manager, and 5 techs .  Two nurses work the seats wear problem patients and new patients sit.  2 nurses inject medicine and check patients, and each tech takes care of 3 patients.  The reason for this staffing level is that the center is half owned by a local hospital and half by Fresinius. I use a Fresinius clinic near my vacation house and they staf with 1 nurse manager, 1 nurse, Zand one tech for every for seats.
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Vt Big Rig
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« Reply #9 on: October 07, 2015, 04:24:40 AM »
Quote from: Michael Murphy on October 06, 2015, 05:04:01 PM
Two nurses work the seats wear problem patients and new patients sit.  2 nurses inject medicine and check patients, and each tech takes care of 3 patients. 

OK, I have to ask .........  which category do you fit in  ....... "problem patient? :rofl; :rofl;

Sorry!!!!
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
PrimeTimer
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« Reply #10 on: October 07, 2015, 06:46:13 PM »
Take a look out the back of your clinic. Make sure you don't see a doghouse there. If so, RUNNN!
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Michael Murphy
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« Reply #11 on: October 07, 2015, 07:36:48 PM »
No I graduated to the adult section, I. Guess problem was a poor choice of words, the patients the staff wants to keep a experienced eye on, the funny thing is the newest tech on that shift has Ben there 15 years.
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Simon Dog
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« Reply #12 on: October 08, 2015, 07:51:12 AM »
Quote from: PrimeTimer on October 07, 2015, 06:46:13 PM
Take a look out the back of your clinic. Make sure you don't see a doghouse there. If so, RUNNN!
Why?
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PrimeTimer
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« Reply #13 on: October 08, 2015, 04:04:38 PM »
Quote from: Simon Dog on October 08, 2015, 07:51:12 AM
Quote from: PrimeTimer on October 07, 2015, 06:46:13 PM
Take a look out the back of your clinic. Make sure you don't see a doghouse there. If so, RUNNN!
Why?
You see a doghouse out back of a clinic it's probably a sign that you don't want to ever get on their bad side. However, that doesn't mean that "good" patients get manicures, pedicures and neck rubs.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Sugarlump
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10 years on and off dialysis
« Reply #14 on: October 13, 2015, 01:01:24 AM »
Now there's a thought ... rewards for good patients!!!
Behavior during dialysis or fluid control?
 :rofl; :rofl; :rofl;
Pedicures (whilst on dialysis would be good!) and nail painting!
Manicures too!!!
Gift baskets full of non-potassium treats...
How about a magic token for missing a dialysis session (I jestt!!!)
A shopping fairy to do your grocery shop whilst you dialyse hmmmmmmm that does sound good!!!
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
justagirl2325
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« Reply #15 on: October 13, 2015, 06:59:18 AM »
Along the same line as RNs are things a pharmacist assistant shouldn't say to a care partner.  "Oh you're in luck we have one box of heparin in stock, normally we don't stock it but the guy who ordered it died."
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Simon Dog
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« Reply #16 on: October 13, 2015, 08:14:52 AM »
Quote from: Sugarlump on October 13, 2015, 01:01:24 AM
Now there's a thought ... rewards for good patients!!!
It's called living longer.
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Sugarlump
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10 years on and off dialysis
« Reply #17 on: October 15, 2015, 01:05:06 AM »
The flip of side of that is of course MORE dialysis sessions   ::)
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Simon Dog
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« Reply #18 on: October 15, 2015, 07:07:45 AM »
Quote from: Sugarlump on October 15, 2015, 01:05:06 AM
The flip of side of that is of course MORE dialysis sessions   ::)
Ain't no free lunch  :o
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Sugarlump
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10 years on and off dialysis
« Reply #19 on: October 15, 2015, 08:35:14 AM »
If you go to France they feed you on dialysis (dependent on your session time baguettes,compote or yoghurt, brioche or croissant.... :guitar:
In our closest unit in England, we get a cup of tea and 2 biscuits!
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Simon Dog
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Posts: 3460
« Reply #20 on: October 15, 2015, 09:14:28 AM »
Quote from: Sugarlump on October 15, 2015, 08:35:14 AM
If you go to France they feed you on dialysis (dependent on your session time baguettes,compote or yoghurt, brioche or croissant.... :guitar:
In our closest unit in England, we get a cup of tea and 2 biscuits!
Well, I suppose if insurance or the govt's is paying, that comes rather close to a free lunch.
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