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Author Topic: It's your body! Ask lots of questions  (Read 2317 times)
okarol
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« on: December 07, 2008, 12:26:12 AM »

It's your body! Ask lots of questions


Date published: 12/7/2008

It's your body! Ask lots of questions

This is in response to Helen Pfohl's letter ["Dialysis patients, ask questions," Nov. 11].

As a retired registered nurse and patient advocate, I support what Ms. Pfohl stated. The reality is that many patients, as well as family members, hesitate to question those practices that are being implemented or to ask questions related to their treatment.

This hesitation often is born out of the fear of retaliation--which is, in fact, a reality that some patients experience.

Patients are often told that if they do not like what is happening in their facility, they can transfer to another facility. Often, staff will respond to a question with either a statement or body language that clearly tells the patient, "Do not ask."

Having communicated with patients, families, and staff throughout the U.S., it is my opinion that providers of dialysis treatment facilities must thoroughly educate and train their staffs to understand that it is the patient's life and that the patient and his advocate have a right to ask questions.

Staff cannot become defensive when questions are asked.

Having reviewed hundreds of dialysis facility inspection reports, I believe that many facilities do not follow their own policies and procedures and do not follow federal and state regulations.

Additionally, it was clear in my review of inspection reports that many facilities had staff that were not adequately trained.

Roberta Mikles

San Diego

The writer is director of Health Care Patient Advocates.


Date published: 12/7/2008

http://fredericksburg.com/News/FLS/2008/122008/12072008/429562
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
kitkatz
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« Reply #1 on: December 07, 2008, 10:19:11 AM »

Duh! Just ask one of us who has dealt with them for years!
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
okarol
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« Reply #2 on: December 07, 2008, 11:45:13 AM »


Hey Kit! You read a news article!  :yahoo;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
MiSSis
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« Reply #3 on: December 07, 2008, 11:55:22 AM »

I just hate it, whether it's a dialysis center, hospital or doctor's office, when they treat you like they're doing you a big favor when in essence they're supposed to be doing the job YOU ARE PAYING THEM FOR!!!   If I'd treated my customers the way I've been treated, I'd have been fired from my job on the spot.  Seems like people just don't understand the concept of customer service and compassion anymore.
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"Keep your face to the sunshine and you will not see the shadows."  Helen Keller
okarol
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« Reply #4 on: December 07, 2008, 11:58:46 AM »


I agree. We would complain if we got bad service at a restaurant but not at the clinic! The difference is you can choose a different restaurant, but often the dialysis center is determined for you. Or you'd have to travel a great distance.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
peleroja
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« Reply #5 on: December 07, 2008, 12:34:54 PM »

I wholeheartedly agree.  When I was first assigned to a PD doctor, he wouldn't allow me to ask questions and acted like I had no clue.  I walked out of his office and straight to the director of nursing and said, "I will not have that man as my doctor."  When new medication is prescribed, I ask questions and read the information that comes with it.  If I don't like the side effects I talk with the doctor, and sometimes I refuse to take it.  If you are positive you are right, stand your ground.  After all, YOU are the only you that you have.
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Bajanne
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« Reply #6 on: December 07, 2008, 12:44:50 PM »

When I was young, in my culture, you never questioned the actions of a doctor/teacher/police officer/nurse.  We even have a saying "When your hand is in the lion's mouth, you have to ease it out gently" when dealing with these.
Thank goodness, we have come to realize that these are not perfect and we need to learn to question for our own good.
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I LOVE  my IHD family! :grouphug;
Zach
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« Reply #7 on: December 07, 2008, 01:00:59 PM »

Roberta Mikles speaks truth to power.

8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
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monrein
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« Reply #8 on: December 07, 2008, 02:50:10 PM »

I guess I was born pushy, er I mean assertive.  I've been questioning/pestering/debating with my doctors ever since I've been going to them.  Even as a kid I needed full explanations, much to my mother's embarrassment at times.  She would sometimes say in the office, that she'd explain things to me later at home but I'd insist that the doctor explain things to me first and we could go over them again at home.

I cut my fingers very badly with a machete when I was 9, digging worms to go fishing.  I bundled my three cut fingers together (one joint was almost right off), ran and got Mum to take me to the doctor but refused to show her the fingers because I thought she'd faint.  At the office I still wouldn't show her and told the doc to do the stitches as fast as he could.  No anesthetic, nothing.  He sewed the fingers back together (three stitches in each of two fingers, none in the third)  and I watched the whole time asking questions to keep myself focused not on the pain.  He told me I was his bravest patient ever.  I didn't feel particularly brave but it was pure adrenaline and stubbornness.  I was really angry with myself for making a silly mistake by cutting myself and I wasn't supposed to have been using the machete in the first place so I figured I needed to take it all on myself so Mum wouldn't kill me.  She was mad at me but also proud at how I handled it.  I let her look at my fingers once they were securely back in the right places.

Self-advocacy is super important.  Trouble is when we're really ill, it can be a real struggle.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
kitkatz
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« Reply #9 on: December 07, 2008, 07:07:53 PM »

I am currently playing bump the patient around the Kaiser docs because my neph got promoted to chief of Medicine. I hate it.  I have a doc appointment Tuesday 10:30. I had that neph for ten years I have been on dialysis after I fired the first Kaiser doc I had in hospital. What a jerk he was! My neph let me run things and make decisions for myslef. We shall see how this one works out!


Yes, Okarol, been reading interesting ones all along!  :2thumbsup;
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Chris
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« Reply #10 on: December 07, 2008, 09:04:16 PM »

I gotta remember to read this one when I have more time. Somebody post something so I'll have the link!
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
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No two day's are the same, are they?
jessup
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« Reply #11 on: December 07, 2008, 09:07:13 PM »

something ?
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