the ipro esrd network of new york patient advisory committee (pac) patient sme speakers bureau...
TRANSCRIPT
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The IPRO ESRD Network of New YorkPatient Advisory Committee (PAC)
Patient SME Speakers Bureau
Treatment Options:Our Views from the Chair
End-Stage Renal Disease Network of New York
October 2015
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Treatment Options
Sharing Our Stories Why We Chose Treatment Option Pros and Cons of the Treatment Option What We Want Staff to Know
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In Center Dialysis
End-Stage Renal Disease Network of New York 3
My Story
Fred Atkin: Kidney Cancer Advocate
● 2001 Papillary Renal Cell Carcinoma. Survivor - so far● 2011 AV Fistula● 2012 Cardiac Event Hospitalized - Initial Dialysis
Intake at Dialysis Center: Overwhelming Too Much-Too-Soon - Too Much to Sign● Infiltrated at first in center treatment● Excluded from first Team Review
● Became ESRD Network PAC Representative and Patient SME
MYGOAL - Change US Dialysis Culture
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In Center Dialysis
End-Stage Renal Disease Network of New York 4
Why I Chose the Treatment
● I DIDN’T choose it
● Nephrologist Ordered in Hospital
● Initially no knowledge of alternative options
● Went directly from hospital to In-Center
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In Center Dialysis
Pros of Treatment
● Extends life?
● Concerned staff satisfies dialysis requirements
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In Center Dialysis
End-Stage Renal Disease Network of New York 6
Cons of Treatment● Hospitalizations: In about 4 years of dialysis hospitalized many times:
TAVI
Pacemaker
● Stunning Harms: Brain; Heart; Kidneys; Gut; Skin
● Prisoner of the Chair
● Limited to Small Molecule Removal
● No proven Standards for Bicarbonate Values
● No Alkalosis/Acidosis testing
● Unreliable CO2 blood testing at distant labs
● Travel is difficult
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In Center Dialysis
What I Want Staff to Know● We are Clients!
● We want to be EDUCATED not DOCUMENTED
● Lowering machines dialysate ½ degree below Client’s body temperature reduces Stunning
● Ensure clients wash prior and after dialysis
● Inform clients of all meds and dosages prior to insertion and identify blood draw tests
● Vitamin K2 reduces calcification
● Nutrition during dialysis is needed to improve mortality and reduce hospitalizations
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In Center Dialysis
What I Want Staff to Know (Cont’d)● Capable clients require in chair exercise PROGRAM (bike, stair stepper) to reduce muscle loss and increase waste removal
We Clients fully appreciate all you do for us even if we don’t
tell you often enough!
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In Center Nocturnal Dialysis
9End-Stage Renal Disease Network of New York
Michael Butler
My Story
•Travel on Dialysis – Tobago, Puerto Rico, San Diego, and Milford, Ct (nocturnal in-center).
•On standard in-center dialysis – bloated, toxic, exhausted
•Chronic heart failure – ejection fraction 19%
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In Center Nocturnal Dialysis
10End-Stage Renal Disease Network of New York
Why I Chose the Treatment•Overnight Dialysis
•Tuesdays, Thursdays, Sundays
•Gentle blood flow rate - 300
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In Center Nocturnal Dialysis
11End-Stage Renal Disease Network of New York
Pros of the Treatment
•Less side effects
•Feeling better
•Increased energy levels
•Improved quality of sleep
•Better appetites and more freedom with diet
Cons of the Treatment
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In Center Nocturnal Dialysis
12End-Stage Renal Disease Network of New York
What I Want Staff to Know
•Modality is under utilized
•More nocturnal dialysis centers
•More patient education
•Share this information
•A patient friendly schedule
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Peritoneal Dialysis
13End-Stage Renal Disease Network of New York
Stephanie Dixon: Infection Control Advocate
My Story
•Feeling run down, lack of energy
•Delayed Surgery
•Had to start on dialysis or I would to die
•Concerned about daughter 14 and son 18 what would happen?
•MD recommended PD
•4 years then to HD
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Peritoneal Dialysis
14End-Stage Renal Disease Network of New York
Why I chose the Treatment
• Nephrologist recommended
• No blood, no needles
• In control and involved
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Peritoneal Dialysis
15End-Stage Renal Disease Network of New York
Pros of the Treatment•More freedom with diet/fluid
•Travel easier
•Increased energy level
•Clinic visit only once a month
Cons of the Treatment
•Infection
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Peritoneal Dialysis
16End-Stage Renal Disease Network of New York
What I Want Staff to Know
• INFECTION CONTROL
• Wash your hands!
• I want to keep myself well
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Home Hemodialysis
17End-Stage Renal Disease Network of New York
Dawn EdwardsMy Story
•1993: 24 year old single working Mom •Pregnant? Lower Back Pain?? No Period? ESRD•Nephrologist suggested in center or PD
• “But PD will give you an infection and you will die”•Depressed: decided to withdraw from dialysis. •New nephrologist, said “try PD before you stop dialysis totally” •PD for 10 years until Transplant •Transplant for 6 years •2006 – 2010 Network Community Outreach Coordinator•2010 Multiple Medical Complications back on PD, could no longer work•Colectomy/NO PD. MRSA – in hospital 2 months.•Changed centers and doctors because my center did not have HHD. •HHD with a Catheter
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Home Hemodialysis
18End-Stage Renal Disease Network of New York
Why I chose the Treatment
• Couldn’t do PD any more - PD preferred treatment
• Had to be in control
• Data shows good outcomes
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Home Hemodialysis
19End-Stage Renal Disease Network of New York
Pros of the Treatment:
•Improvement in Outcomes:
• Kt/V
• Mortality
• Feel better, more energy
•Less stress/Better health
•Less recovery time after treatment
•Less fluid/dietary restrictions
•Sleep better
•Able to go back to work
•More quality time
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Home Hemodialysis
20End-Stage Renal Disease Network of New York
Cons of the Treatment:
• Switch centers/nephrologist
• A lot of responsibility – have to do everything yourself
• Not as short a treatment as I thought it would be
• Self cannulation
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Home HemodialysisWhat I want Staff to know:
• Some patients do not have a choice on vascular access
• Going home can change the most non compliant patient into a dialysis super star Best dialysis going based on the data and outcomes
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• Excellent for patients that want a transplant because you are in better health and for patients that have a hard time with diet/fluid
• When patient feels better it changes the whole family dynamic
• I feel better now than I ever did, including when I had the transplant.
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Question for the Audience:
22End-Stage Renal Disease Network of New York
Think about it:
What treatment option would YOU choose?
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For More Information:
23End-Stage Renal Disease Network of New York
• Peer mentors are available
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Questions? Comments?
24End-Stage Renal Disease Network of New York
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Thank YOU
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Contact
IPRO ESRD Network of New YorkPatient SME Speakers Bureau
(516) 209-5578
CORPORATE HEADQUARTERS
1979 Marcus AvenueLake Success, NY 11042-1002
REGIONAL OFFICE
20 Corporate Woods BoulevardAlbany, NY 12211-2370
www.ipro.org