1. The IPRO ESRD Network of New York Patient Advisory Committee (PAC) Patient SME Speakers Bureau Treatment Options: Our Views from the Chair End-Stage Renal Disease Network of New York October 2015

2. Treatment Options  Sharing Our Stories  Why We Chose Treatment Option  Pros and Cons of the Treatment Option  What We Want Staff to Know 2

3. 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

4. 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

5. In Center Dialysis Pros of Treatment ● Extends life? ● Concerned staff satisfies dialysis requirements 5

6. 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

7. 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 7

8. 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! 8

9. In Center Nocturnal Dialysis 9 End-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%

10. In Center Nocturnal Dialysis 10 End-Stage Renal Disease Network of New York Why I Chose the Treatment Overnight Dialysis Tuesdays, Thursdays, Sundays Gentle blood flow rate - 300

11. In Center Nocturnal Dialysis 11 End-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

12. In Center Nocturnal Dialysis 12 End-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

13. Peritoneal Dialysis 13 End-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

14. Peritoneal Dialysis 14 End-Stage Renal Disease Network of New York Why I chose the Treatment Nephrologist recommended No blood, no needles In control and involved

15. Peritoneal Dialysis 15 End-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

16. Peritoneal Dialysis 16 End-Stage Renal Disease Network of New York What I Want Staff to Know INFECTION CONTROL Wash your hands! I want to keep myself well

17. Home Hemodialysis 17 End-Stage Renal Disease Network of New York Dawn Edwards My 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

18. Home Hemodialysis 18 End-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

19. Home Hemodialysis 19 End-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

20. Home Hemodialysis 20 End-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

21. Home Hemodialysis What 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 21 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.

22. Question for the Audience: 22 End-Stage Renal Disease Network of New York Think about it: What treatment option would YOU choose?

23. For More Information: 23 End-Stage Renal Disease Network of New York Peer mentors are available

24. Questions? Comments? 24 End-Stage Renal Disease Network of New York

25. Thank YOU 25

26. Contact IPRO ESRD Network of New York Patient SME Speakers Bureau Info@nw2.esrd.net (516) 209-5578 CORPORATE HEADQUARTERS 1979 Marcus Avenue Lake Success, NY 11042-1002 REGIONAL OFFICE 20 Corporate Woods Boulevard Albany, NY 12211-2370 www.ipro.org