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Author Topic: Worldwide research project - please participate in our survey  (Read 5878 times)
GoingThere
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« on: January 07, 2013, 07:11:52 AM »
Dear Sir/Madam,

dialysis patients can have issues when having AV fistula as AV fistula can include scar tissue and the appearance of “bulging veins” at the access site. This can affect persons’ self-esteem which is related to body image for several reasons: people care about how others view them; people want to fit in and not stand out or appear different; people feel judged and evaluated according to looks. These are the reasons why Slovenian Kidney’s disease society  research group conduct a survey among HD patients around the world to see how they cope with AV fistula.


You are kindly invited to participate in this pioneer project. Filling out the anonymous questionnaire at the following link https://www.1ka.si/a/14221 will take only 7 minutes of your time. All the gathered data will be used strictly for scientific purposes. The results of the study will be published on this website.

The questionnaire will be available till the end of March.

Thank you for your time and cooporation!

We would also like to thank to the admins for allowing us to post this survey.

Yours sincerely,

Slovenian Kidney’s disease society research team
Logged
1995 - kidney biopsy - IgA
2002 - BP 220/140 - hospitilized
2004 - stage 3 of kidney failure
2005 - stagae 4of kidney failure
2009 - on the edge of stage 5
july 2010 - stage 5
14 july 2010 - catheter inserted and first D session
15 july 2010 - AV fistula created
dec. 2012 - tx with major rejection (plasmapheresis, atg, prednisone pulses)
apr 2013 - kidney function stable
CebuShan
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« Reply #1 on: January 07, 2013, 08:02:12 AM »
I answered it. Interesting survey.
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Think GOD doesn't have a sense of humor?
HE created marriage and children.
Think about it! LOL!
GoingThere
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« Reply #2 on: January 10, 2013, 01:41:26 PM »
C mon guys, we can do better than that. Your voice is a voice of change.
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1995 - kidney biopsy - IgA
2002 - BP 220/140 - hospitilized
2004 - stage 3 of kidney failure
2005 - stagae 4of kidney failure
2009 - on the edge of stage 5
july 2010 - stage 5
14 july 2010 - catheter inserted and first D session
15 july 2010 - AV fistula created
dec. 2012 - tx with major rejection (plasmapheresis, atg, prednisone pulses)
apr 2013 - kidney function stable
MaryD
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« Reply #3 on: January 10, 2013, 03:56:29 PM »
I've already done it.
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kit78
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« Reply #4 on: January 13, 2013, 10:42:45 AM »
I did it.
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Inherited PKD from my Mother who died at age 52
2001 Transplant - Blessed...only on list for 4 days
2012 Lost Transplant and had Pneumonia
2012 June - started Dialysis
2012 December -  Back on Transplant list
kitkatz
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« Reply #5 on: January 13, 2013, 08:40:57 PM »
Done.
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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
GoingThere
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« Reply #6 on: January 18, 2013, 05:46:28 AM »
Till now we have received 22 answers. I must write something that this post will be on top again  :shy;
Logged
1995 - kidney biopsy - IgA
2002 - BP 220/140 - hospitilized
2004 - stage 3 of kidney failure
2005 - stagae 4of kidney failure
2009 - on the edge of stage 5
july 2010 - stage 5
14 july 2010 - catheter inserted and first D session
15 july 2010 - AV fistula created
dec. 2012 - tx with major rejection (plasmapheresis, atg, prednisone pulses)
apr 2013 - kidney function stable
Rivy
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« Reply #7 on: January 18, 2013, 08:53:09 AM »
 :thumbup; Thank you for doing this..This has been on my mind about my AV fistula and the appearance of it that makes me feel less self-esteem then I should...No one understands how you feel that don't get it..Thank you for doing such a great job! 
Rivy :cuddle;

Quote from: GoingThere on January 07, 2013, 07:11:52 AM
Dear Sir/Madam,

dialysis patients can have issues when having AV fistula as AV fistula can include scar tissue and the appearance of “bulging veins” at the access site. This can affect persons’ self-esteem which is related to body image for several reasons: people care about how others view them; people want to fit in and not stand out or appear different; people feel judged and evaluated according to looks. These are the reasons why Slovenian Kidney’s disease society  research group conduct a survey among HD patients around the world to see how they cope with AV fistula.


You are kindly invited to participate in this pioneer project. Filling out the anonymous questionnaire at the following link https://www.1ka.si/a/14221 will take only 7 minutes of your time. All the gathered data will be used strictly for scientific purposes. The results of the study will be published on this website.

The questionnaire will be available till the end of March.

Thank you for your time and cooporation!

We would also like to thank to the admins for allowing us to post this survey.

Yours sincerely,

Slovenian Kidney’s disease society research team
Logged
gothiclovemonkey
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« Reply #8 on: January 18, 2013, 08:01:21 PM »
done
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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
TX listed 8/1/11 inactive
LISTED ACTIVE! 11/14/11 !!!
boswife
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us and fam easter 2013
« Reply #9 on: January 18, 2013, 08:56:41 PM »
i did it  too :)  I asked bo for answers but i did it for him a few days ago though so would be included in your first count... hope you get a bunch more  :2thumbsup;... 
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Lexxtech18
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Be good to yourself when nobody else will.
« Reply #10 on: January 19, 2013, 04:58:44 AM »
Done! Interesting survey, I'm very curious to see the results.  :2thumbsup;
Logged
Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
GoingThere
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« Reply #11 on: January 31, 2013, 01:41:46 AM »
I must write something to bring this post on top.
I already conducted survey among slovenian HD patients and results will be presented with poster at Spring Clinical meeting in Orlando, Florida from April 2-6. Although I'm the 
first author I won't be there as crowded places present danger to me due to ATG in high doseage of drugs. But three of my colleagues will be there.


GT
Logged
1995 - kidney biopsy - IgA
2002 - BP 220/140 - hospitilized
2004 - stage 3 of kidney failure
2005 - stagae 4of kidney failure
2009 - on the edge of stage 5
july 2010 - stage 5
14 july 2010 - catheter inserted and first D session
15 july 2010 - AV fistula created
dec. 2012 - tx with major rejection (plasmapheresis, atg, prednisone pulses)
apr 2013 - kidney function stable
SugarBear
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« Reply #12 on: January 31, 2013, 01:29:59 PM »
Thanks for bumping as I might have miss this post.  I did the survey and was wondering have you thought of posting this link on Facebook?  There are several dialysis groups on there.  You may significantly increase your respondent numbers.
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Xbox GT: ShonumShogun

CKD due to FSGS 1999
Drop from Stage 4 to Stage 2 ESRD 2000
ESRD 2005
Started Dialysis September 13, 2006
Short Daily Home Hemo March 2009
Back to In-Center Hemo August 2009 (Too Many Hours)
Nocturnal Home Hemo with Remote Viewers  May 2010
Received Transplant March 1, 2012
Transplant Failed in October 2017
Nocturnal Home Hemo with Remote Viewers December 2017
del
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del and willowtreewren meet
« Reply #13 on: January 31, 2013, 02:51:32 PM »
Done!!
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Don't take your organs to heaven.  Heaven knows we need them here.
GoingThere
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« Reply #14 on: February 01, 2013, 02:08:57 AM »
Quote from: SugarBear on January 31, 2013, 01:29:59 PM
Thanks for bumping as I might have miss this post.  I did the survey and was wondering have you thought of posting this link on Facebook?  There are several dialysis groups on there.  You may significantly increase your respondent numbers.

Tnx for the idea. I will do that. Which groups did you have in mind?

GT
Logged
1995 - kidney biopsy - IgA
2002 - BP 220/140 - hospitilized
2004 - stage 3 of kidney failure
2005 - stagae 4of kidney failure
2009 - on the edge of stage 5
july 2010 - stage 5
14 july 2010 - catheter inserted and first D session
15 july 2010 - AV fistula created
dec. 2012 - tx with major rejection (plasmapheresis, atg, prednisone pulses)
apr 2013 - kidney function stable
chook
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« Reply #15 on: February 01, 2013, 04:58:19 AM »
Done!!
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Diagnosed PKD 1967, age 8
Commenced PD June 2010
Commenced APD July 2010
Transplant March 2011 - so lucky!
"To strive, to seek, to find...and not to yield!"
Alex C.
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« Reply #16 on: February 01, 2013, 07:53:12 AM »
FWIW, when my mother started dialysis almost 30 years ago, they gave her a vein graft on her left forearm rather than a fistula, and THAT was very, very ugly. From that day forward, she never again wore short sleeves. She even made her own clothing, and designed several tops with roomy lower sleeves, so that she  could cover the access during dialysis and not feel cold.
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Desert Dancer
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« Reply #17 on: February 01, 2013, 11:01:23 AM »
Done.
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
SugarBear
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« Reply #18 on: February 01, 2013, 03:41:59 PM »
Quote from: GoingThere on February 01, 2013, 02:08:57 AM
Quote from: SugarBear on January 31, 2013, 01:29:59 PM
Thanks for bumping as I might have miss this post.  I did the survey and was wondering have you thought of posting this link on Facebook?  There are several dialysis groups on there.  You may significantly increase your respondent numbers.

Tnx for the idea. I will do that. Which groups did you have in mind?

GT

These are the ones I usually follow, not sure if you can post without joining the groups.

https://www.facebook.com/groups/2229039880/

https://www.facebook.com/groups/25199689389/

https://www.facebook.com/groups/DialysisUncensored/

https://www.facebook.com/groups/44692413281/

https://www.facebook.com/groups/kidneyclub/
Logged
Xbox GT: ShonumShogun

CKD due to FSGS 1999
Drop from Stage 4 to Stage 2 ESRD 2000
ESRD 2005
Started Dialysis September 13, 2006
Short Daily Home Hemo March 2009
Back to In-Center Hemo August 2009 (Too Many Hours)
Nocturnal Home Hemo with Remote Viewers  May 2010
Received Transplant March 1, 2012
Transplant Failed in October 2017
Nocturnal Home Hemo with Remote Viewers December 2017
GoingThere
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« Reply #19 on: February 06, 2013, 01:23:32 AM »
Did you know that approximately 1/3 of HD patients would like to have a cosmetic surgery of their AV fistula due to "bumps".
Logged
1995 - kidney biopsy - IgA
2002 - BP 220/140 - hospitilized
2004 - stage 3 of kidney failure
2005 - stagae 4of kidney failure
2009 - on the edge of stage 5
july 2010 - stage 5
14 july 2010 - catheter inserted and first D session
15 july 2010 - AV fistula created
dec. 2012 - tx with major rejection (plasmapheresis, atg, prednisone pulses)
apr 2013 - kidney function stable
Leanne
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« Reply #20 on: February 06, 2013, 08:23:49 AM »
Done...during dialysis no less.
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Leanne

I am more than a patient.  I am a mama, friend, wife, sister, and most of all a person.

41 years old, hemo since November 2011, trained for PD and tried numerous times.  PD did not work for me , it was a nightmare :(
natnnnat
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WWW
« Reply #21 on: February 09, 2013, 04:23:50 AM »
Done.  I found it quite an interesting survey too.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
geoffcamp
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« Reply #22 on: February 09, 2013, 05:13:26 AM »
Done. Great questionnaire what/when/where can I see results?  THX. G.
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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
GoingThere
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« Reply #23 on: February 09, 2013, 06:30:40 AM »
I will do quick analysis after I'm done gathering data. But I'm focused on SCI Journals.
Slovenian results will be presented at Spring clinical meetings in Orlando. I will also post poster here on IHD.

GT
Logged
1995 - kidney biopsy - IgA
2002 - BP 220/140 - hospitilized
2004 - stage 3 of kidney failure
2005 - stagae 4of kidney failure
2009 - on the edge of stage 5
july 2010 - stage 5
14 july 2010 - catheter inserted and first D session
15 july 2010 - AV fistula created
dec. 2012 - tx with major rejection (plasmapheresis, atg, prednisone pulses)
apr 2013 - kidney function stable
geoffcamp
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« Reply #24 on: February 09, 2013, 12:59:00 PM »
Quote from: GoingThere on February 09, 2013, 06:30:40 AM
I will do quick analysis after I'm done gathering data. But I'm focused on SCI Journals.
Slovenian results will be presented at Spring clinical meetings in Orlando. I will also post poster here on IHD.

GT

Cool I actually live about 2 hours from Orlando. Can't wait to see the results. G.
Logged
Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
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