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Author Topic: Fistula Education Materials (Includes FEAR of Fistulas)  (Read 3361 times)
Meinuk
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« on: February 02, 2011, 09:53:07 AM »

This is what is available on the Fistula First Website:  http://fistulafirst.org/Patients/PatientEducationalMaterials.aspx
(includes a link to a video with a kinda familiar face...)


Fistula or Catheter: The Patient's Perspective  http://fistulafirst.org/LinkClick.aspx?fileticket=dS2HSHjdV4U%3d&tabid=202
 
Access = Lifeline  - New http://fistulafirst.org/LinkClick.aspx?fileticket=NNmrkftUtcA%3d&tabid=202
One page educational flyer for patients, advantages and disadvantages for each vascular access type used for hemodialysis.  From the FFBI Coalition, Clinical Practice Workgroup.  Spanish Version  http://fistulafirst.org/LinkClick.aspx?fileticket=kezCyKcDKTg%3d&tabid=202

Access Options for Dialysis http://fistulafirst.org/LinkClick.aspx?fileticket=Ml3leoq3Hz0%3d&tabid=202
One page article (page 3) covers access options, why each is used, pros and cons of each, access care, and what problems to report to your care team. From the NKF Family Focus newsletter.

Buttonhole Cannulation - Video http://www.homedialysis.org/pros/links/BillMovie1.flv
Dialysis patient Bill Peckham self-cannulates using the Buttonhole technique.  Provided by Home Dialysis Central.


Caring for & Developing Your New Fistula: What You Should Know http://fistulafirst.org/LinkClick.aspx?fileticket=puiGBUWIl0o%3d&tabid=202
Tri-fold brochure tells you about exercises you can do after fistula surgery to help the fistula develop well and mature faster. Also covers how to care for your new fistula, including listening to the bruit, feeling for the thrill, and watching for signs of problems.  Provided by ESRD Network 12, the Heartland Kidney Network.

Choosing Your Hemodialysis Vascular Access http://fistulafirst.org/LinkClick.aspx?fileticket=iZhh7gCQeQA%3d&tabid=202
Two page article (page 6-7) describes access options, pros and cons, how to choose an access, access care, explains how to ask for a referral to a vascular surgeon, where to find a surgeon who has made a lot of AV fistulas, and how to ask for a second opinion. It includes a list of questions to bring to an office visit with a surgeon.  Provided by the NKF's Family Focus Newsletter.

Conquering Your Fistula Fear  http://fistulafirst.org/LinkClick.aspx?fileticket=uLbaUq3M9xs%3d&tabid=202
Three page fact sheet has a wealth of information on how to conquer fear of dialysis (such as needle sticks and blood loss) and fear of the medical setting, health care providers, and/or surgery.  Also covers concerns about how a fistula looks and gives tips on dealing with strangers' questions. Provided by ESRD Network 12, Heartland Kidney Network, with input from the 18 ESRD Networks across the nation.
 

Dialysis Needle Fear: Easing the Sting http://fistulafirst.org/LinkClick.aspx?fileticket=p88GAcZU2M0%3d&tabid=202
Three page article explains needle fear and has tips you can use before and during needle placement to reduce fear and pain.  Provided by Home Dialysis Central (MEI).


Dialysis Patients Speak: A Conversation About the Importance of AV Fistulas
http://www.networkofnewengland.org/Fistula%20First/FFResources.pdf
A 12-minute video, designed exclusively for patient audiences old and new, you will see renal professionals you may recognize and real dialysis patients telling their access stories from the heart. It is humorous, moving and educational. There is major emphasis on placement and use of AVF as a first blood access, and strong cautionary tales about catheters. The conversational style of the video is non-threatening, sincere and candid. Our hope is that your patients see the video and are encouraged to have discussions about vascular access choices.  Provided by ESRD Network 1, Network of New England


Doppler Imaging & Vessel Mapping http://fistulafirst.org/LinkClick.aspx?fileticket=rj7Zf4UnRHc%3d&tabid=202
 Illustrated, tri-fold brochure explains what a Doppler study is, types of Doppler studies (Duplex Doppler, Color Doppler), and how to prepare for a Doppler.  Provided by ESRD Network 12, the Heartland Kidney Network.

FAQ Brochure for Patients and Families http://fistulafirst.org/LinkClick.aspx?fileticket=WM_jAiywHuE%3d&tabid=202
A collection of Frequently Asked Questions for Patients and Families.

Fistula Complications: Stenosis & Thrombosis http://fistulafirst.org/LinkClick.aspx?fileticket=g-uRP0bFuiA%3d&tabid=202
Tri-fold brochure explains narrowing (stenosis) and clotting (thrombosis) and describes non-surgical treatment options, including interventional radiology and angiography.  Provided by ESRD Network 12, the Heartland Kidney Network.

Frequently Asked Questions about AV Fistulas http://fistulafirst.org/LinkClick.aspx?fileticket=idC4DZQl8Y0%3d&tabid=202
Two page fact sheet presents vessel mapping as a first step in helping to decide if you are a candidate for an AV fistula.  Provided by ESRD Network 12, the Heartland Kidney Network.
 
In Control (Vol. 1, No. 1: Fistulas) http://fistulafirst.org/LinkClick.aspx?fileticket=8MTpjoC4e1M%3d&tabid=202
Four page patient newsletter section explains your access options, why fistulas are best, asking for and caring for a fistula, and why it's a good idea to put in your own needles. Provided by Life Options (MEI).

Just the Facts: Vascular Access  http://fistulafirst.org/LinkClick.aspx?fileticket=ZoOLdaWnOLk%3d&tabid=202
Illustrated, two page fact sheet gives an overview of access types, offers tips to avoid infection, blockage, and injury to your access. This fact sheet includes an overview of what happens in access surgery, including a brief discussion of anesthesia and what you can do during dialysis to protect your access, with sample questions you can ask your care team.  Provided by Life Options (Medical Education Institute, Inc; MEI).

Kidney School Module 8 - Vascular Access: A Lifeline for Dialysis http://fistulafirst.org/LinkClick.aspx?fileticket=MMnEVPm9HAE%3d&tabid=202
Illustrated, 27 page module offers tips to help you protect your blood vessels and improve your chances of having a good fistula.  This module also has tips for dealing with fears such as surgery, needles and needle sticks, and worries about access scars. Includes personal stories and information on numbing creams to ease needle pain.  Provided by Life Options' Kidney School (MEI).


Maintaining Your Lifeline http://fistulafirst.org/LinkClick.aspx?fileticket=VgtHUp-6mt4%3d&tabid=202
Illustrated, 12 page newsletter has information on getting ready for access placement, symptoms to watch for after surgery, and tells you how to check for your thrill and bruit.  Also describes narrowing (stenosis) and how to prevent it.  Provided by ESRD Network 12, the Heartland Kidney Network.

Patient Education Video: Your Access to Success http://fistulafirst.org/LinkClick.aspx?fileticket=ejGvmJV-SE8%3d&tabid=202
Your Access to Success is a video produced by Renal Network 11. The video educates patients on the different types of vascular access. In it, patients describe the benefits of receiving dialysis with an arteriovenous fistula. (13 minutes in length)

 
Phase 1: AAKP Patient Plan  http://fistulafirst.org/LinkClick.aspx?fileticket=STaQzzzCcwM%3d&tabid=202
Fifty six page book, Diagnosis to Treatment Choice, explains on pages 7-12 how to work with your care team to deal with your emotions about kidney failure. Also covers depression, anxiety, and how to talk about kidney disease with your family and friends.  Pages 15-16 describes access care steps before the needles are placed to protect you and your access.  Provided by  the AAKP.


Phase 2: AAKP Patient Plan http://fistulafirst.org/LinkClick.aspx?fileticket=7iagCHeULSs%3d&tabid=202
Fifty seven page book, Access and Initiation, pages 5-6 gives a detailed overview of fistula placement, from choosing the site to deciding the best choice if a problem occurs.  This book describes exercises that will help your fistula work better, and how to check your new fistula after surgery.  Provided by the AAKP.


Phase 3: AAKP Patient Plan http://fistulafirst.org/LinkClick.aspx?fileticket=FSE7xL0nrDo%3d&tabid=202
Forty five page book (pages 12-14), Stabilization, explains narrowing (stenosis), describes the most common sites where it occurs, and lists the problems it can lead to - like clotting. Also tells you what to expect if your fistula develops a clot.  Provided by the AAKP.


Putting "U" in Fistula  http://fistulafirst.org/LinkClick.aspx?fileticket=Y9IIZRZbvG0%3d&tabid=202
Illustrated, 12 page newsletter presents step-by-step information on having a fistula created (vessel mapping, surgery, needles, pain) and reviews numbing medications. Provided by ESRD Network 12, the Heartland Kidney Network.


Renal Health News - Patient Newsletter http://fistulafirst.org/LinkClick.aspx?fileticket=MsjKlorQKl8%3d&tabid=202
Twelve page newsletter on Fistula First covers putting in your own needles as a way for you to take charge of needle fear and have more control over your dialysis.  The buttonhole technique is also described.  Provided by the Southeastern Kidney Council.


Understanding Your Hemodialysis Access Options http://fistulafirst.org/LinkClick.aspx?fileticket=dS2HSHjdV4U%3d&tabid=202
Six page booklet has detailed information on access types, with pros and cons of each, and information about caring for an access. Provided by the American Association of Kidney Patients (AAKP).

 
Using the Buttonhole Technique for Your AV Fistula  http://fistulafirst.org/LinkClick.aspx?fileticket=aM7Q86GDN-w%3d&tabid=202
Tri-fold brochure describes the buttonhole technique for putting needles into a fistula, with history, benefits, and types of needles used.  Provided by the Northwest Renal Network.

 
Vascular Access Passport Set - Part 1 http://fistulafirst.org/LinkClick.aspx?fileticket=FHOCQ8c52rA%3d&tabid=202

Vascular Access Passport Set - Part 2 http://fistulafirst.org/LinkClick.aspx?fileticket=IMtkQxS9-_k%3d&tabid=202
Two part resource contains forms for access recordkeeping, so you can keep track of the date(s) of placement, your surgeon's name, access site(s), and any revision/cause of failure information.  Also provides cards to remind health care workers how to protect your veins (and access sites).  Provide by the ESRD Network of New England.


Your Access Care Pocket Guide http://fistulafirst.org/LinkClick.aspx?fileticket=GJkU41jvm4o%3d&tabid=202
Two page reminder guide covers the most important points about access care, using a TLC (touch, look, care) approach.  Provided by the The Renal Network, Inc.
 

 

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Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
boswife
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us and fam easter 2013

« Reply #1 on: February 02, 2011, 04:34:18 PM »

Wow!! great stuff here!!  thanks a million!!! 
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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
lsamen
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Lynda Samen

« Reply #2 on: February 03, 2011, 10:12:21 AM »

I had such "fistula fear" of leakage that I invented the "Safe~T~Sleeve" vascular access and fistula cover that you put OVER your pressure bandages to prevent leakage.  I think that they are even more imporant to the caregiver, because the bleeding thing is something that CAN be fixed.  check out our web page, "safetysleevedialysiscover.com and see what you think.....it helps to not have people always stareing at us like junkies because of our access....Thanks, take care, looks like a great day on the river......Lynda Samen
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Sincerely Lynda Samen
Inventor: Safe~T~Sleeve
Stoday
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« Reply #3 on: February 03, 2011, 07:52:16 PM »

Hmmm...

I think I'd like to know if I'm leaking so that I can put pressure on the site until it clots again.

It seems to me that the sleeve would absorb the blood but do nothing to limit and stop the bleeding.
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Diagnosed stage 3 CKD May 2003
AV fistula placed June 2009
Started hemo July 2010
Heart Attacks June 2005; October 2010; July 2011
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