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

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

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

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

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%

In Center Nocturnal Dialysis

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Why I Chose the Treatment•Overnight Dialysis

•Tuesdays, Thursdays, Sundays

•Gentle blood flow rate - 300

In Center Nocturnal Dialysis

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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

In Center Nocturnal Dialysis

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What I Want Staff to Know

•Modality is under utilized

•More nocturnal dialysis centers

•More patient education

•Share this information

•A patient friendly schedule

Peritoneal Dialysis

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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

Peritoneal Dialysis

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Why I chose the Treatment

• Nephrologist recommended

• No blood, no needles

• In control and involved

Peritoneal Dialysis

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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

Peritoneal Dialysis

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What I Want Staff to Know

• INFECTION CONTROL

• Wash your hands!

• I want to keep myself well

Home Hemodialysis

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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

Home Hemodialysis

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Why I chose the Treatment

• Couldn’t do PD any more - PD preferred treatment

• Had to be in control

• Data shows good outcomes

Home Hemodialysis

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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

Home Hemodialysis

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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

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.

Question for the Audience:

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Think about it:

What treatment option would YOU choose?

For More Information:

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• Peer mentors are available

Questions? Comments?

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Thank YOU

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Contact

IPRO ESRD Network of New YorkPatient SME Speakers Bureau

Info@nw2.esrd.net

(516) 209-5578

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