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Author Topic: Help with research please?  (Read 6896 times)
thuy4343
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« on: January 14, 2016, 01:56:46 PM »

Hi everyone, my name is Thuy and I'm currently a senior at the University of California, Davis. As a senior, I have to do a project and I chose Kidney Disease and Dialysis treatments. I'm working towards a solution that will hopefully help dialysis patients have a better experience with the treatment (less pain/discomfort), but to get there I have to gather information on how patients feel about the treatment. You do not need to fill out any information about yourself; it is completely anonymous! There are 1 of 3 surveys you can take depending on if you receive dialysis at home or in the hospital, or if you administer dialysis. Please help me help others by doing the survey! Thank you very much!

For caretakers:
http://goo.gl/forms/yyy09yT70T

For home users:
http://goo.gl/forms/fNlzp0CBqX

For hospital/clinic patients:
http://goo.gl/forms/Y9gWEPm6jS


« Last Edit: January 27, 2016, 01:22:35 AM by thuy4343 » Logged
PatDowns
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Celebrating 60th B'Day. 12/26/15

« Reply #1 on: January 14, 2016, 03:10:07 PM »

Did you receive permission from IHD administrators to do this survey?  Until it is given, I suggest members be careful and not open the surveys until this is known.
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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
kitkatz
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« Reply #2 on: January 14, 2016, 05:14:19 PM »

I have responded to this member for more information on his project.  I looked at the survey.  It is anonymous and does not ask for any personal information.  Members can decide for themselves whether to participate or not.


kitkatz,Admin
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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
thuy4343
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« Reply #3 on: January 14, 2016, 05:40:50 PM »

Hi everyone,

I've apologized to kitkatz through email already, but I wanted everyone to know that I am sorry if this bothered you in any way. I did not email any admin before posting, that was my mistake. I am not sure if I will be granted permission to keep this post up, but it is an anonymous survey. My only intention for it is to gather information about how you feel about dialysis so that I can try help to help a lot of people in the future. Thanks.
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kristina
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« Reply #4 on: January 15, 2016, 02:02:13 AM »

Hello thuy4343,

I have had a look at your anonymous survey about "Hospital Patients receiving Hemodialysis"
and it seems to be specifically a "lidocaine"-related and "reasons to participate in self-dialysis"-survey...
Since I have never used "licodaine" in any shape or form and don't use self-dialysis either,
there is hardly anything for me to fill in and I wonder what the survey is really all about?
Many thanks from Kristina.
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Vt Big Rig
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« Reply #5 on: January 15, 2016, 05:53:23 AM »

Also in your home dialysis section you ask a question about why better than in "hospital".

First of all I assume you mean in a center .....and since I have never been in center I left it blank as I have no basis for an answer. And it won't then let me submit because it is a "required response".
Logged

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
iolaire
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« Reply #6 on: January 15, 2016, 05:57:07 AM »

Hello thuy4343,

I have had a look at your anonymous survey about "Hospital Patients receiving Hemodialysis"
and it seems to be specifically a "lidocaine"-related and "reasons to participate in self-dialysis"-survey...
Since I have never used "licodaine" in any shape or form and don't use self-dialysis either,
there is hardly anything for me to fill in and I wonder what the survey is really all about?
Many thanks from Kristina.
I went ahead and filled it out, I don't use lidocaine and have no issues but I still put that the needle insertion was a four at the pain level.  (That's highly subjective.)  It will help the data to have people who don't have issues with needles.   This type of data will help the person understand more about dialysis.  Likely they have a limited view of it.  Just from my center and my shift I'd say 80+% of the patients do not use lidocaine.
Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
kitkatz
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« Reply #7 on: January 15, 2016, 11:16:17 AM »

Thuy4343's information he sent to me about his project.


I apologize, I didn't know. I read the rules and didn't see anything on it so I did post it up.

I'm a student at the University of California, Davis. As stated I am in my senior year. I'm in the biomedical engineering program at UCD and it requires that everyone take part of the senior design project before graduation. The Biomedical Engineering department gets many requests each year from firms and hospitals on problems that they want the students of the department to help solve. The professor that runs the project (Professor Passerini) looks through these requests and filters out what he thinks is good as a project for us students. Good means that its solution is open ended and that it can be done in the time frame given (~ 6 months). We work in a team of 4-5 on these projects for 6 months, with 4 progress reports and 4 design reviews spread out in those 6 months. At the end of the time period, we are required to have a working prototype of the device we created to help solve the issued presented to us.

We chose and got assigned to do the dialysis access needle. We work with a mentor (a specialist in the field) to help us define goals and patient needs that will contribute towards the design of our project. Right now, there is some speculation going on that many patients refuse to do self-dialysis at home because they are scared (either scared of the pain or hurting themselves). We need to prove or disprove that quantitatively, so we chose a survey. The survey is broken down into simple questions that allow us to assess the real problems of dialysis and why people don't do it themselves or at home. The survey would be a really great help to us if you allow it to be posted, and we hope that with that information we can really produce a device that can help patients in the future. The survey is anonymous, but I completely understand if you feel like it's inappropriate in anyway. Please let me know what you decide.

Thank you,
Thuy
Logged



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
PatDowns
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« Reply #8 on: January 15, 2016, 08:10:12 PM »


I went ahead and filled it out, I don't use lidocaine and have no issues but I still put that the needle insertion was a four at the pain level.  (That's highly subjective.)  It will help the data to have people who don't have issues with needles.   This type of data will help the person understand more about dialysis.  Likely they have a limited view of it.  Just from my center and my shift I'd say 80+% of the patients do not use lidocaine.


Lidocaine, administered as a shot, has not been the first choice as a numbing agent in almost a decade.  Its use causes additional scarring which isn't good for fistula/graft longevity.  Plus, it depresses the vein, making for harder needle insertion, espeically in newly formed fistulas/grafts.    Most patients now use a product called EMLA CREAM to numb the area of needle insertion (generically, 2.5% lidocaine and 2.5% prilocaine).  Patients apply the cream 30-60 minutes before treatment and tape a piece of saran wrap around the area to hold in place.  When removed that part of the arm should be sufficiently numbed for the dialysis needles.  The main negative - it causes skin thinning over time.  - 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
kristina
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« Reply #9 on: January 16, 2016, 02:19:27 AM »

Thuy4343's information he sent to me about his project.


I apologize, I didn't know. I read the rules and didn't see anything on it so I did post it up.

I'm a student at the University of California, Davis. As stated I am in my senior year. I'm in the biomedical engineering program at UCD and it requires that everyone take part of the senior design project before graduation. The Biomedical Engineering department gets many requests each year from firms and hospitals on problems that they want the students of the department to help solve. The professor that runs the project (Professor Passerini) looks through these requests and filters out what he thinks is good as a project for us students. Good means that its solution is open ended and that it can be done in the time frame given (~ 6 months). We work in a team of 4-5 on these projects for 6 months, with 4 progress reports and 4 design reviews spread out in those 6 months. At the end of the time period, we are required to have a working prototype of the device we created to help solve the issued presented to us.

We chose and got assigned to do the dialysis access needle. We work with a mentor (a specialist in the field) to help us define goals and patient needs that will contribute towards the design of our project. Right now, there is some speculation going on that many patients refuse to do self-dialysis at home because they are scared (either scared of the pain or hurting themselves). We need to prove or disprove that quantitatively, so we chose a survey. The survey is broken down into simple questions that allow us to assess the real problems of dialysis and why people don't do it themselves or at home. The survey would be a really great help to us if you allow it to be posted, and we hope that with that information we can really produce a device that can help patients in the future. The survey is anonymous, but I completely understand if you feel like it's inappropriate in anyway. Please let me know what you decide.

Thank you,
Thuy

Hello kitkatz, many thanks for this useful information, it is very much appreciated.
Thanks again from Kristina.
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
thuy4343
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« Reply #10 on: January 26, 2016, 02:47:11 PM »

Hello thuy4343,

I have had a look at your anonymous survey about "Hospital Patients receiving Hemodialysis"
and it seems to be specifically a "lidocaine"-related and "reasons to participate in self-dialysis"-survey...
Since I have never used "licodaine" in any shape or form and don't use self-dialysis either,
there is hardly anything for me to fill in and I wonder what the survey is really all about?
Many thanks from Kristina.

Hi Kristina,

First, I apologize for not responding sooner; other aspects of this project have become more time sensitive lately. Right now the RN we are working with thinks that a lot of people don't participate in self-dialysis is because they are scared of pain, and his end goal with this project is to have more patients do it themselves at home because of lower costs. Because we met him in a hospital setting, we were presented in a different environment where they use lidocaine as opposed to the EMLA cream that many people use now. If you would like to participate (thank you if you do) then if you could just answer the questions that do relate to you then it'd be helpful. I have made quite a few revisions to the clinic/hospital survey, so I think more things will pertain to you now.

This survey's purpose is for us to try and get a sense of what patients feel and need as opposed to what the RN has been telling us. I hope I answered your questions, but if you have any more please feel free to ask!
Logged
thuy4343
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« Reply #11 on: January 26, 2016, 02:50:24 PM »

Also in your home dialysis section you ask a question about why better than in "hospital".

First of all I assume you mean in a center .....and since I have never been in center I left it blank as I have no basis for an answer. And it won't then let me submit because it is a "required response".

Yes, I apologize for the confusion. My group and I were presented with this project in a hospital setting, so we were unaware of the clinics. I have fixed the survey since, and if you would still like to participate (thank you if you do) then please do. Thank you!

If you have any more questions please fell free to ask :)
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thuy4343
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« Reply #12 on: January 26, 2016, 02:52:40 PM »

I went ahead and filled it out, I don't use lidocaine and have no issues but I still put that the needle insertion was a four at the pain level.  (That's highly subjective.)  It will help the data to have people who don't have issues with needles.   This type of data will help the person understand more about dialysis.  Likely they have a limited view of it.  Just from my center and my shift I'd say 80+% of the patients do not use lidocaine.

Thank you very much for your participation iolaire! that and the information you just provided will be really helpful in the next coming week!
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kickingandscreaming
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« Reply #13 on: January 26, 2016, 06:39:58 PM »

I'm not going to fill out the survey because, although I am a home user, I use peritoneal dialysis and not home hemo.  So the issue of needles doesn't come up in PD.  Before starting PD, I did 2 months of in center hemo, but I also didn't have to confront the needle issue as I have a neck/chest (AV) catheter and the "sticking" part doesn't have to go into my flesh.  I can tell you, however, that I am needle phobic, and the idea of being stuck with 2 horse needles multiple times a week is more than I can even imagine.  Not to mention doing it to myself if I were in home hemo.  Totally out of the question.  Death is a more pleasant option to me than that.  I hope some young biomedical engineer can think up a better way than the current one.  Maybe a bionic fistula that feel no pain.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
thuy4343
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« Reply #14 on: January 27, 2016, 11:54:20 AM »

I'm not going to fill out the survey because, although I am a home user, I use peritoneal dialysis and not home hemo.  So the issue of needles doesn't come up in PD.  Before starting PD, I did 2 months of in center hemo, but I also didn't have to confront the needle issue as I have a neck/chest (AV) catheter and the "sticking" part doesn't have to go into my flesh.  I can tell you, however, that I am needle phobic, and the idea of being stuck with 2 horse needles multiple times a week is more than I can even imagine.  Not to mention doing it to myself if I were in home hemo.  Totally out of the question.  Death is a more pleasant option to me than that.  I hope some young biomedical engineer can think up a better way than the current one.  Maybe a bionic fistula that feel no pain.


Thanks for your input! It really is helpful in terms of figuring out the logistics. From what we have so far, many people dislike the amount of time it takes, so I find this your view very interesting because no one has brought up that they had needlephobia
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Vt Big Rig
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« Reply #15 on: January 27, 2016, 03:35:40 PM »

Also in your home dialysis section you ask a question about why better than in "hospital".

First of all I assume you mean in a center .....and since I have never been in center I left it blank as I have no basis for an answer. And it won't then let me submit because it is a "required response".

Yes, I apologize for the confusion. My group and I were presented with this project in a hospital setting, so we were unaware of the clinics. I have fixed the survey since, and if you would still like to participate (thank you if you do) then please do. Thank you!

If you have any more questions please fell free to ask :)

But I still have no in center experience and would still have to leave it blank.
Logged

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
thuy4343
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« Reply #16 on: January 27, 2016, 04:14:47 PM »


But I still have no in center experience and would still have to leave it blank.

Oh, you could've put i N/A for that. But i fixed the question. If you would still like to participate, it would be really appreciated. Thanks Vt Big Rig!!
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kristina
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« Reply #17 on: January 28, 2016, 03:06:20 AM »

Hello thuy4343,

I have had a look at your anonymous survey about "Hospital Patients receiving Hemodialysis"
and it seems to be specifically a "lidocaine"-related and "reasons to participate in self-dialysis"-survey...
Since I have never used "licodaine" in any shape or form and don't use self-dialysis either,
there is hardly anything for me to fill in and I wonder what the survey is really all about?
Many thanks from Kristina.

Hi Kristina,

First, I apologize for not responding sooner; other aspects of this project have become more time sensitive lately. Right now the RN we are working with thinks that a lot of people don't participate in self-dialysis is because they are scared of pain, and his end goal with this project is to have more patients do it themselves at home because of lower costs. Because we met him in a hospital setting, we were presented in a different environment where they use lidocaine as opposed to the EMLA cream that many people use now. If you would like to participate (thank you if you do) then if you could just answer the questions that do relate to you then it'd be helpful. I have made quite a few revisions to the clinic/hospital survey, so I think more things will pertain to you now.

This survey's purpose is for us to try and get a sense of what patients feel and need as opposed to what the RN has been telling us. I hope I answered your questions, but if you have any more please feel free to ask!

Many thanks thuy4343 for your kind explanation, it is very much appreciated.
I have now filled-in the form and it was a bit difficult because I don't need pain-medication (touch wood it continues like that !!!) .
I also have  - for over one year now - a tunneled-chest-catheter "installed" and I "only" have to make absolutely sure
that "it" is kept clinically clean at all times and does not come into contact with any dampness or any water etc...
Thank you again for your kind effort and I do hope this survey does help dialysis-patients in the future
and I send you my best wishes,
Kristina. :grouphug;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
thuy4343
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« Reply #18 on: January 28, 2016, 10:48:49 AM »


Many thanks thuy4343 for your kind explanation, it is very much appreciated.
I have now filled-in the form and it was a bit difficult because I don't need pain-medication (touch wood it continues like that !!!) .
I also have  - for over one year now - a tunneled-chest-catheter "installed" and I "only" have to make absolutely sure
that "it" is kept clinically clean at all times and does not come into contact with any dampness or any water etc...
Thank you again for your kind effort and I do hope this survey does help dialysis-patients in the future
and I send you my best wishes,
Kristina. :grouphug;

Thank you so much kristina!!! I'm sure your responses will be very helpful regardless. Your kind words truly inspire me to always try my best. It's people like you that make me love the field I chose! I wish all the best for you, and I can only help that my device might help you in the future.  :thx;
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Vt Big Rig
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« Reply #19 on: January 28, 2016, 04:33:56 PM »

Finally got back to this. Hope it helps. Perhaps you can post your results and conclusions.
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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
Heisenburg
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« Reply #20 on: January 28, 2016, 09:09:07 PM »

>For caretakers:
>http://goo.gl/forms/yyy09yT70T
>
>For home users:
>http://goo.gl/forms/fNlzp0CBqX
>
>For hospital/clinic patients:
>http://goo.gl/forms/Y9gWEPm6jS

Submit does not work.
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Heisenburg
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« Reply #21 on: January 28, 2016, 09:44:44 PM »

I have responded to this member for more information on his project.  I looked at the survey.  It is anonymous and does not ask for any personal information.  Members can decide for themselves whether to participate or not.


kitkatz,Admin


 :oops;

The [submit] button does Smiley  :) birthday  :birthday;  lol   :lol; Wink   ;) bestwishes   :bestwishes; pics?  bandance   :bandance; you're crazy  :urcrazy; Grin   ;D Angry  >:(  sarcasm :sarcasm;  secret   :secret;  :( Sad   :boxing; boxing   :o Shocked    8)  Cool    ??? Huh   ::) Roll Eyes   :P Tongue   :-* Kiss   :'( Cry   >:D Evil   :twocents; twocents   :oops; oops   :banghead; banghead  :pray; praying   :laugh: laugh   :blank: blank   :police: police   :embarassed: embarassed   :sos;Help
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Edited: Fixed quote tag error-kitkatz-Admin

EDITED: Fixed smiley tag errors as examples-kitkatz,Admin
« Last Edit: February 01, 2016, 03:33:57 AM by kitkatz » Logged

You all know exactly who I am. :)
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