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Author Topic: profile - Perry Ecksel  (Read 3739 times)
pecksel
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« on: February 02, 2009, 07:29:30 AM »
Hello all. I am Perry Ecksel, and in 1982, along with Robert Rosen, I started the National Kidney Patients Association. I kept it going until the mid 1990's. We fought the Government, Nationsal Medical Care,-(WR GRACE) the physicians and what seemed to be the world.  We did, however attain lots of publicity and won some small battles.  With Robert's death and the lack of patient support it became difficult to continue. During that time we raised issues such as re-use, poor patient care, misuse of products, etc.  It was an uphill battle and since it was funded by me alone, very frustrating, and costlyl.  The one unfulfilled goal in my life was to help those on Dialysis to receive quality care.  Now that I have retired, I would like to reinvolve myself in this battle.  I am not on dialysis - just one who cares about righting wrongs.
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MandaMe1986
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« Reply #1 on: February 02, 2009, 07:38:53 AM »
You sound like you will be a wonderful person to have.  :welcomesign;
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
Zach
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"Still crazy after all these years."
« Reply #2 on: February 02, 2009, 07:55:40 AM »
Welcome to IHD, Perry!

You and Robert Rosen were fighting for dailysis patents at a time when centers were making their 15% profits and not always providing quality care.  The two of you exposed abuses in reuse and other areas of patient care, and for that many of us are grateful.

Glad to have you in our community!
 :beer1;
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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
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
willieandwinnie
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« Reply #3 on: February 02, 2009, 08:07:06 AM »
:welcomesign; Perry. Glad you joined us and look forward to hearing more from you.  :cuddle;
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Bill Peckham
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« Reply #4 on: February 02, 2009, 09:41:01 AM »
Welcome Perry. There is still much to be done to improve the provision of dialysis.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
monrein
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« Reply #5 on: February 02, 2009, 09:55:16 AM »
Welcome Perry, as you well know, there is still no shortage of need for advocacy in the area of good quality dialysis provision.  Profit greed is alive and well and in the medical arena the bottom line is often at the expense of patient well-being.  I live in Canada and am often appalled by some of what I hear on this board.  I look forward to your posts and to hearing your views on these issues.
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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
Zach
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"Still crazy after all these years."
« Reply #6 on: February 02, 2009, 10:08:18 AM »
Just a little history about the Goliath that Perry Ecksel and Robert Rosen had been fighting against:

Death and Deficiency in Kidney Treatment
 
By KURT EICHENWALD
The New York Times
Published: December 4, 1995
http://query.nytimes.com/gst/fullpage.html?res=9D07E4DC1E39F937A35751C1A963958260&sec=health&spon=&pagewanted=1


We need to know the past fights to understand the way forward.
 8)
« Last Edit: February 02, 2009, 10:10:51 AM by Zach » Logged
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
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
drinkboy
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« Reply #7 on: February 02, 2009, 11:02:30 AM »
Welcome aboard...nice to have you join our group
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paul.karen
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« Reply #8 on: February 02, 2009, 11:24:39 AM »
Thanks for coming to IHD to help promote better services for patients with dialysis. :waving;

Zach that was a good if not disturbing read thx.
P&K
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
Joe Paul
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« Reply #9 on: February 02, 2009, 11:36:55 AM »
Welcome Perry, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
thegrammalady
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« Reply #10 on: February 02, 2009, 11:52:35 AM »
 :welcomesign;
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
Romona
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« Reply #11 on: February 02, 2009, 01:13:17 PM »
 :welcomesign;
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #12 on: February 02, 2009, 01:31:25 PM »

Welcome Perry, I am glad you could join us. I look forward to your participation!

Thanks Zach, for the link to the 1995 article - one quote stood out to me, "Based on the evidence I have seen in litigation, I must conclude that this company is driven by economics, and not by any overriding concern for the welfare of its patients," - sad that this is still a problem 14 years later!
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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
kellyt
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« Reply #13 on: February 02, 2009, 02:14:53 PM »
 :waving;   And Thank You for your efforts!      :welcomesign;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Tinah1968
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ME
« Reply #14 on: February 02, 2009, 06:59:23 PM »
 :welcomesign;
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Tina
Fistula Oct 2007
Started Dialysis May 22, 2009
Dan.Larrabee
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« Reply #15 on: February 02, 2009, 08:19:08 PM »
Thanks for all the work you have done. Being new to dialysis, I will never know what it was like before you made a difference.  :clap;
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AKA Dialysis Dan
Feeling the best I can because of Home Hemo
Doing it the best way I can by making it Nocturnal
Sharing it to help everyone feel they best they can
www.youtube.com/dialysisdan
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« Reply #16 on: February 03, 2009, 12:49:00 AM »
Welcome to our community, Perry!  I am very pleased that you would take the time to join us.   We appreciate all that you have done for dialysis patients.  This group has become much more than just a website for a lot of us: it is a genuine family, caring and sharing  :grouphug;  And we are happy that someone like you is now part of our IHD family.  I am looking forward to your input. :cuddle;




Bajanne, Moderator
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
jessup
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« Reply #17 on: February 03, 2009, 01:41:59 AM »
G'day and  :welcomesign; mate
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G-Ma
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« Reply #18 on: February 03, 2009, 01:48:17 AM »
 :welcomesign;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
pelagia
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« Reply #19 on: February 03, 2009, 03:21:29 AM »
 :welcomesign;  It's great to hear that you have a renewed interest in the cause.  I am looking forward to reading your posts.
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
paris
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« Reply #20 on: February 03, 2009, 04:29:10 PM »
We are very glad you joined IHD.  It will be good to have your participation and knowledge.  We will all be looking forward to reading more from you.   :welcomesign;






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It's not what you gather, but what you scatter that tells what kind of life you have lived.
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