Volume 5

December 2012

The

Special points of interest:

• Patient Advocacy

• Facility Patient Representative

• Dining on the Go!

• Patient's Bill of Rights

• Patient Advisory Committee

• Super Staff Award

• Anemia Resources

• Grievance Procedure

• Home Dialyzors United

• Recipe

• Potassium Finder

• Word Search

• Patient Resources

one Star News etter

The secret is – YOU have more power than you know.

Really. Would you say you were an advocate? Given your experience living a life with kidney disease, of course you are! And you have incredible power to change not only the course of your own care in a positive way, but that of your fellow patients and in fact, the delivery of care itself. We have all, with what we have learned on this journey, become “subject matter experts;” uniquely qualified to share the information that people making decisions about our care need to know. And our opinions and ideas on our healthcare are being welcomed across the system as never before. It’s about so much more than numbers and statistics.

Advocacy is defined as changing “what is” into “what should be.” In healthcare, advocacy is all about the need to be respected and listened to, and to be involved in the decision making that will affect our lives at every level. Advocacy comes from the need to support people in finding resolutions to issues that concern them; the need to redress an inequality or injustice in the system and to promote health and access to health care in communities and the larger public. In our case, this can be accomplished by sharing our story and experiences in a meaningful way that puts a face on kidney disease and those issues important to us that will help promote well informed decision making about the delivery of care by those charged with doing so.

Continued on pages 2 – 4

Advocating for Change – Making a Difference

A Newsletter for People with Chronic Kidney Diseases and Their Families The End Stage Renal Disease Network of Texas, Inc. 4040 McEwen, Suite 350 Dallas, Texas 75244

Phone: 877-886-4435 www.esrdnetwork.org

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In recent years, we have heard more and more frequently phrases like: “patient centered care,” “patient engagement” and “patient empowerment.” The Institute of Medicine (IOM) defines patient centered care as “Health care that establishes a PARTNERSHIP among practitioners, patients and their families to ensure that the decisions respect patient wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care.” Patient centered care is also one of the overarching goals of health advocacy, in addition to safer medical systems and greater patient involvement in healthcare design and delivery.

Dr. Howard Koh, the Assistant Secretary for Health in the US Department of Health and Human Services has said: “Advocacy is the engine for change, and the beauty of it is that it can begin with just one person.” So how do we effect this change?

We can begin by speaking up, and following in the footsteps of advocates before us. Patient advocacy as we know it grew out of the patient rights movement of the 1970’s when the National Welfare Rights Organization was instrumental in getting passed the National Patient Rights Bill of 1972. That same year the Medicare ESRD benefit was created, after someone dialyzed on the floor of Congress to highlight the need for accessibility to this lifesaving therapy. Advocates.

Positive change can be accomplished in so many ways through advocacy; creating awareness, offering information and education in learning opportunities in our communities, providing the support through shared experiences that help empower our fellow patients and family members, developing relationships with those in positions of influence, and providing testament when we can to help those unaffected by kidney disease understand what that truly means. And in fact, some of the very best advocacy is simply and implicitly through the example of your lives; living well and fully with a chronic illness 24/7 all year round, getting your medical needs met, but still holding to the things that are meaningful to you, speaks volumes about what a life CAN be like even with kidney disease.

There are many opportunities for advocacy; they can range from the personal to the profound, and there are many different ways to involve ourselves.

First and foremost is self-advocacy: to seek what is best for us individually in terms of care by learning about ourselves and our health in this context, and sharing that with those providing us that care.

Continued on page 3

Advocating for Change – Making a Difference

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Advocating for Change – Making a Difference

Next, is advocacy for our fellow patients: being mindful and seeing what is happening around us and sharing that for the betterment of conditions for everyone. Supporting and encouraging others to do the same. Beyond that is medical advocacy; understanding medical processes and procedures and having a say in the way that care is delivered and those treatments are provided in the system.

Legislative advocacy, at both the state and federal levels; knowing and connecting with the governmental agencies and organizations that are making decisions about our care, its provision and payment.

Regulatory advocacy; knowing about and connecting with the agencies and organizations that have oversight in the delivery of care and its quality and safety.

There are so many places that are looking for your opinion now about what it’s like to be a kidney patient and what’s important in our care. One of the best opportunities is right here within the ESRD Network system, by becoming a patient representative in your unit, or perhaps finding out about the Network Patient Advisory Committee. Beyond that it can be connecting with everything from your state legislature and state public health commissions, to your congressional representatives in the US Senate and House – let them hear from you! There are also the Centers for Medicare and Medicaid, CMM Innovations Center, and Food and Drug Administration Advisory Committees – they all need to understand your perspectives.

There are many organizations to help you get started; your network website and the Forum of ESRD Networks has a list of patient organizations to get involved with, including those like Home Dialyzors United, the American Association for Kidney Patients, and the National Kidney Foundation, as well as many local and regional kidney support organizations. They can help you further yourself as an effective advocate. Be part of educational events such as World Kidney Day or National Kidney Awareness Month, community health fairs and media and press outreach, legislative or public health commission committee hearings.

Sometimes advocacy is simply being in the right place at the right time. The more you participate in the process, the more this will happen. And just keep in mind; while clinical expertise and evidence is very important to providing good quality and safe care, only connecting with the people sitting in the chairs – the people on the receiving end of care and their families, like you … will get the whole story.

Continued on page 4

P A G E 4 T H E L O N E ST A R N E W SL E T T E R

You don’t have to be a public policy expert or know EVERYTHING. You just have to share your story in effective ways. Pick one area that you are passionate about – one need you can help address – and dedicate your energies and time to it. You can make such a difference! We can all create circles of influence and knowledge around ourselves, impacting and motivating others – it’s all about taking that first step. Change can be slow, though, sometimes excruciatingly slow, and it can be hard to be patient, or feel as if we are having any effect. But advocacy is like dripping water on a rock… ultimately, it wears away resistance.

Margaret Meads said it best: “Never doubt that a small group of thoughtful committed people can change the world. Indeed, it is the only thing that ever has.”

About the Author Kathe LeBeau is a home hemodialysis patient of five years and a waiting kidney transplant candidate. A passionate patient advocate for ever improving access to and quality of care for those like herself with CKD, she feels it is critically important that the voice of patient experience be shared both with fellow patients and renal professionals. Kathe serves on the IPRO NY-Network 2 Council Patient Advisory Committee and the UNOS/OPTN Operations and Patient Safety Committee. She has testified before FDA Advisory Committees, CMS and MedCAC on issues related to the bundling of dialysis care and anemia management. Additionally, Kathe has served on the National Quality Forum ESRD Steering Committee for New Renal Quality Measures and Renal Measure Maintenance, the Technical Expert Panel on Anemia Management Measure Development, a Board Member of Home Dialyzors United and member of the Home Dialysis Alliance. Kathe and her husband/treatment care partner are the founders and facilitators of the Capital NYS Kidney Club Patient and Family Support Group.

Even though it is winter you can still GET MOVING! Ultracare from Fresenius Medical Care has Simply Fit videos on their website and over 15 featured exercises with instructions. The exercises are things that can be done at home. The Simply Fit videos show you how to do exercises that are right for dialysis patients. Remember to always check with your doctor before beginning an exercise program. Research shows that regular exercise can help improve your general health and quality of life.

For more information visit: http://www.ultracare-dialysis.com/HealthyLifestyles/GetMoving.aspx or check out the Network 14 Healthy Living page:

http://www.esrdnetwork.org/patients/Healthy_Living.asp

A D V O C A T E

Dialysis Dining on the “GO”: A Dialysis Patient’s Guide for Fast Food, Casual Dinging, Convenience, and Much, Much More…The following companies are included in the guidebook:

Cost: $9.95 per book plus Shipping and Handling. To order (email only):

alleycat2001rd@yahoo.com cynthia42@hotmail.com

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What do you get when you mix an ESRD patient, dialysis facility and the ESRD Network of Texas, Inc?

ESRD Patient + Dialysis Facility + ESRD Network =

Facility Patient Representative

With the new year comes new changes. Beginning in 2013, Network Patient Representatives (NPRs) will be called Facility Patient Representatives (FPRs). What is a Facility Patient Representative? A FPR is a committed and informed patient. FPRs participate in their care and are active at their facility. They represent other patients at the facility. They assist new patients and as well as facility staff. The Facility Patient Representative program is about building relationships with your fellow patients, your facility staff members and the Network because no one should sit on the sideline of their care! Each clinic will still be asked by the Network to appoint at least one Facility Patient Representative (FPR) to be a contact person between the clinic patients and the Network. The current Network Patient Representative can become the Facility Patient Representative. Some clinics have a Representative for each shift or each dialysis day. Your facility needs you! If you would like to be considered for the FPR position at your facility, speak with your social worker about the job.

• Burger King • Long John Silvers • Blimpie’s • Kentucky Fried Chicken • Chick-Fil-A • Olive Garden • Chili’s • Taco Bell • Denny’s • And More!!!!

Patient’s Bill of Rights and the Affordable Care Act

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The Affordable Care Act puts consumers back in charge of their health care. Under the law, a new “Patient’s Bill of Rights” gives the American people the stability and flexibility they need to make informed choices about their health.

The Patient's Bill of Rights:

• Provides Coverage to Americans with Pre-existing Conditions: You may be eligible for health coverage under the Pre-Existing Condition Insurance Plan.

• Protects Your Choice of Doctors: Choose the primary care doctor you want from your plan’s network.

• Keeps Young Adults Covered: If you are under 26, you may be eligible to be covered under your parent’s health plan.

• Ends Lifetime Limits on Coverage: Lifetime limits on most benefits are banned for all new health insurance plans.

• Ends Pre-Existing Condition Exclusions for Children: Health plans can no longer limit or deny benefits to children under 19 due to a pre-existing condition.

• Ends Arbitrary Withdrawals of Insurance Coverage: Insurers can no longer cancel your coverage just because you made an honest mistake.

• Reviews Premium Increases: Insurance companies must now publicly justify any unreasonable rate hikes.

• Helps You Get the Most from Your Premium Dollars: Your premium dollars must be spent primarily on health care – not administrative costs.

• Restricts Annual Dollar Limits on Coverage: Annual limits on your health benefits will be phased out by 2014.

• Removes Insurance Company Barriers to Emergency Services: You can seek emergency care at a hospital outside of your health plan’s network.

Continued on page 7

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Patient’s Bill of Rights and the Affordable Care Act

For specific information on each component of the bill of rights please visit: http://www.healthcare.gov/law/features/rights/bill-of-rights/index.html How could the new health care law affect people with kidney disease?

1. Under the new law, adults with pre-existing conditions that caused them to be uninsurable for more than six months became eligible to join a temporary high-risk pool to be run by the states.

2. Effective September 23, 2010, insurers were prohibited from imposing lifetime dollar limits on essential benefits, such as hospital stays, in new policies. This is important be for those on dialysis or with a functioning transplant medical bills can be high

3. Also, as of September 23, 2010, insurers were prohibited from excluding pre-existing medical conditions for children under the age of 19 and also from dropping policyholders when they become sick.

4. Effective January 1, 2014, insurers are prohibited from discriminating against anyone or charging higher rates for pre-existing conditions.

If you are on dialysis: • The Medicare End Stage Renal Disease Program was not changed by

the health care reform law. • New programs in the health reform law focusing on coordinating care for

individuals with chronic diseases should be beneficial for people on dialysis.

Patient Advisory Committee Represents You!

The Patient Advisory Committee (PAC): Your “Voice” at the ESRD Network. To see the complete list of PAC members and the regions they cover, please visit our website at and click on Patients then click on Patient Representatives. The PAC is a group of patients from around the state who give feedback to the Network staff and the Medical Review Board about issues that affect the care and quality of lives of patients. We want to have all regions of Texas covered by PAC members. If you are interested in joining this group, please send a letter of interest to the ESRD Network of Texas, attention: Anna Ramirez or call the Network toll-free at 877-886-4435.

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The Network wishes to thank and congratulate the following exceptional staff for their excellence in patient care:

Joyce White, LVN and Claudia Owens, CCHT from SNG Lufkin Dialysis Center. Nominated by Marie Bradley. “They each provide the best of care and they have the patient’s best of everything at heart. They care!!” (Pictured: from left to right, Joyce and Claudia)

Victor Rios, technician from DaVita Cielo Vista. Nominated by Leticia Unzuela. “Victor is professional, nice and makes treatments as pleasant and comfortable as possible. He answers all our questions in a friendly and courteous manner and always with a smile.” The Dialyspa Team, nominated by Bridget Turpeau for “a job well done and completely changing the dialysis experience.” Joanne Cantu (pictured to the right), Administrative Assistant from DaVita Weslaco Dialysis. Nominated by Miriam Flores, LCSW. “Joanne is the one who keeps everyone on track, motivates all and makes our clinic a nice place to work and a great place to have your dialysis treatments.” Angela Felder, Mario Munoz and Jose Ramirez, technicians from Liberty Dialysis-Lancaster. Nominated by Kenneth Ephraim, Facility Patient Representative. “Angela, Mario and Jose are the most caring CCHTS in their field. They make sure patients receive the best care possible. They are our support group and go above and beyond to assist with the patients and their needs. They stay informed and updated on their training skills and knowledge of their profession. They help relieve the stress of the patients by caring and connecting with them.”

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Super Staff Award

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Tracy Knoblock nurse at Rockdale Kidney Center, nominated by Lawrence Roberson. “Tracy has been with the clinic for three years. Tracy treats each patient with dignity and respect.”

If you have a staff member that went above and beyond, or always provides excellent care to you or others, please nominate them for a super staff award so their hard work can be recognized. You can nominate them by contacting Anna Ramirez aramirez@nw14.esrd.net or 1-877-886-4435, or by sending the following information to the Network either by fax or mail. Network fax # 972-503-3219 Network address; 4040 McEwen Rd Suite 350 Dallas, TX 75244 Your name Super staff’s name and their position Facility name and address Brief description of why you want to nominate them

We will include pictures of staff with their awards and who nominated them if you will send copies to the Network.

Super Staff Award

Compare Dialysis Facilities in Your Area!

The Dialysis Facility Compare tool, located at www.medicare.gov/dialysis, is a tool to help you find dialysis facilities in your area. It has detailed information about

Medicare-certified dialysis facilities and other resources for people with kidney disease. You can use this information to compare the services available and the quality of care provided by facilities in your area and around the country. A flyer

about how to use this valuable tool is on the Network website: http://www.esrdnetwork.org/provider-directory/dialysis-facility-compare.asp.

Network: 1.877.886.4435 Dialysis Facility Compare Website: www.medicare.gov/dialysis

T H E L O N E S T A R N E W SL E T T E R

I have been a patient on hemodialysis for the last four years. There are many adjustments we have to make. Fluid restrictions, dietary restrictions and of course a sense of loss after our kidneys have failed. With that being said, anemia which is a serious condition to patients on dialysis adds to our burden of not feeling well.

Without getting too technical, anemia basically is a condition that affects patients on dialysis. Our kidneys sometimes can no longer secrete the hormone that stimulates red blood cell production in our bones; therefore without having medication to substitute for this hormone we can become anemic.

One of the measures for anemia is Hgb (hemoglobin) if your hemoglobin is below 10, and you are on dialysis, you are considered anemic. The medication that we usually get for anemia is called an “ESA” (Erythropoiesis-Stimulating Agent) usually the brand name Epogen or Procrit or Darbepoetin alfa, called Aranesp. All of these medications substitute for the hormone that our bodies no longer produce when our kidneys fail.

For these medications to work, you also have to have enough iron, folic acid and Vitamin B12 in your blood stream. Together with iron, folic acid and Vitamin B12; over time ESAs can raise your Hgb.

I can tell you from personal experience that I know when my hemoglobin is low. Some signs of low hemoglobin are:

• chronic fatigue and loss of energy, • shortness of breath, • chest pain, • palpitations.

Red blood cells carry oxygen to your body, when your hemoglobin is low your heart is working harder, which also over the long term is damaging to the heart muscle.

Continued on page 11

P A G E 1 0

Talking to your doctor about Anemia Management By James Martinez, PAC Chair for Nassau County IPRO

End Stage Renal Disease Network of New York or Network 2

Be sure to check out the Anemia Tracker from Network 14 on page 13! Ask your Social Worker to make a copy of the tracker.

V O L U M E 5

Things You Can Do If You Think You May Have Low Hemoglobin

1. Advocate for yourself. If the patient is not able to, the caretaker for that person has to step up. Do not depend on your healthcare team alone to make sure you are being treated properly.

2. Tell your nurse and doctor how you are feeling, and what you are experiencing

3. Ask questions. How are they treating your anemia at your center? What is the anemia protocol?

4. Which ESA does your center use? Epo, Aranesp, Procrit? How much are you receiving? And how often do you get it?

5. Know when blood work is being taken and get the results on the next treatment day.

6. Ask your nurse what they plan on doing to make your anemia better if the results come out low.

7. Trend your results. Document for your own use what your hemoglobin is from month to month and the dose of medication you get to treat anemia. This way you will see at what level of hemoglobin you feel best at and try to have them keep you at that level.

8. Ask your dietitian or physician about Folic Acid. If you need it, make sure you are prescribed a Folic Acid supplement and are taking it.

9. Ask your physician if you have acceptable Iron stores (levels) and if you need supplemental Iron. Iron helps carrying oxygen in your red blood cells to all tissues throughout your body.

Doing these few things and getting involved in your own care not only make you feel better and will show your healthcare team that you are taking an active part in your own care. It will make for a better outcome for you & your family and you’ll feel better, too!

James Martinez is PAC chair of Nassau County in Network 2. He started hemodialysis in September 2007. James feels that “being a PAC rep is not just

hearing complaints, but you are an active member of the health care team, providing a friendly ear to patients undergoing the same treatment as I am and to steer them in the right direction when advice is needed.” James is an active

member of DPC (Dialysis Patient Citizen).

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Attention, Attention, Attention All Network “Complaints”

are now called Grievances If I’m having a problem with my facility, what can I do? It is always best to talk to someone at the facility that you trust as a first step. As a patient you have the right to file a grievance against your facility. If you feel that you are not being treated fairly or that staff is not doing what they should for patients during treatment time, you may contact the ESRD Network of Texas and speak with our Patient Services Department. Our goal is to make sure patients receive the best care possible from their dialysis and transplant facilities.

What happens when I call the Network to file a grievance? The Network may decide to investigate the issue or may refer it to the State agency that handles grievances. Unless you give us permission to use your name, your name will not be used during the investigation. In 2011, the Network received over 500 calls from patients and/or facility staff regarding a wide range of issues. Some of the most common grievances were:

• Staff do not care about patients, do not treat them with respect and speak to them in a rude and negative manner.

• The facility schedules treatment times but does not stick to those times. • The facility is discharging or ‘firing’ me without a good reason. • The staff does not stay in their assigned areas during treatment. • Alarms go off for a long time before the staff comes over to check the

machine. • The facility will not fax patient records.

The Patient Services Department will investigate your grievance and determine what plan of action should be taken for a timely resolution. The Patient Services Director may make a visit to the facility, recommend additional staff training or do a patient survey to see if other patients are experiencing the same things that you are. Sometimes immediate action needs to be taken. In those situations the Network will send the grievance to the Department of State Health Services to investigate. The State may survey the facility and/or interview staff and patients.

What does the Network do with this information? Every 3 months the Network reviews all the grievances that have been filed. If a facility has 2 or more grievances during a 3-month period or 3 or more in 6 months, the Patient Services Director will contact the facility and make recommendations on how the facility can reduce grievances. Sometimes the Network will require the facility to develop an improvement plan that the Network will monitor for a period of time. The Network makes every effort to resolve grievances in a timely manner. If you, as a patient ever feel that you are not receiving the best experience of care, please speak with your facility administrator or call our Patient Services Department for assistance toll free @ 1-877-886-4435.

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??? What to do if you have a grievance???

If you are unhappy with the care or treatment you receive at your dialysis clinic or transplant

center, or if you have a grievance about your care, you have the right to file a grievance.

Here’s how to file your grievance:

⇒ First-try to talk to your nurse, doctor, or social worker about the problem. It is possible

there is a simple explanation. Even if there is not a simple explanation, it may be

possible for you and the clinic to work out a solution to the problem that could result in

better care for you and other patients.

⇒ Next-if talking does not resolve the problem, or if you feel you cannot discuss your

problem with the staff at your clinic, you can go directly to the regional administrator or

even the corporate office of your dialysis company or transplant unit. The names and

phone numbers of these people should be posted in the waiting room of your clinic.

Finally-if none of the above actions work or if you feel your clinic or corporation cannot

help you, call one of the Toll Free numbers below for help.

If you contact the Network for help, WE CAN:

Give you names and phone numbers of people you can speak to at your clinic’s corporate offices.

Give you information about Medicare regulations and your rights under Medicare.

Contact the clinic and conduct a confidential investigation into your grievance, which may include

one or more of the following actions:

• Request medical records • Interview staff members or patients and asking for details about a grievance • If necessary, visit a clinic in person • Confidential means we will not tell anyone at the facility or clinic your name, unless you

give us permission to do so

If you contact the Network for help, WE CANNOT:

• Force a clinic or doctor to accept a patient. • Guarantee you can choose which staff members put your needles in. • Change or get involved in anything that has to do with personnel policies and procedures. • Get a doctor, nurse or patient care technician “fired” or transferred.

Texas Department of State Health Services or The ESRD Network of Texas (888)-973-0022 (877)-886-4435

T H E L O N E S T A R N E W SL E T T E R

So what is Home Dialyzors United? Home Dialyzors United (HDU) is a relatively young organization in the renal community. It is comprised of dialysis patients, care partners, nephrologists, renal nurses and other renal professionals who are particularly interested and involved with home dialysis. HDU’s inception in 2007 as NxStageUsers was in the form of an internet listserv. The initial thrust was for patients and care partners to support each other. As the group matured patient advocacy became an added ingredient. Today HDU has developed different facets that relate to support, education, outreach and advocacy. Although the major focus is on home hemodialysis, the organization is cognizant of others with kidney failure and those who have kidney disease. HDU is committed to extend its influence by supporting all home modalities and machines. 2013 will see the integration of peritoneal dialysis into the organization.

HDU obtained it 501(c)(3) nonprofit status from the Internal Revenue Service in late 2011 when it was still NxStageUsers. Subsequently, its name was legally changed due to its recognition the landscape for home dialysis was wider than just one particular manufacturer’s machine. The HDU mission is thus:

HDU actively supports and advocates for more frequent and longer dialysis treatments in order to rehabilitate all persons with kidney failure to again become active, productive citizens in American society. We strive to bring home dialysis patients together through internet platforms, annual conferences and social events for mutual help, the exchange of practical knowledge of kidney dialysis, and friendship.

Our membership is composed of men and women who have personally experienced kidney loss and their care partners and freely chosen to seek out and use the most effective home dialysis modalities available today, with the goal of insuring their return to a healthy, active lifestyle, regardless of age or debilities. We understand and appreciate the benefits of kidney organ transplants, but also recognize that not all those suffering from kidney failure are, or will ever be, acceptable candidates for a transplant, and must therefore rely on dialysis for the rest of their lives.

To that end HDU provides support on several social media internet platforms. Its NxStageUsers Listserv is still active on Yahoo. Facebook groups include NxStageUsers and Home Dialysis.

Continued on page 17

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Home Dialyzors United www.homedialyzorsunited.org

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A Home Dialyzors United Fan Page will soon be unveiled. Local Meet Ups have begun where members get together, usually as a picnic or other venue, to share their stories and hopes together. It brings people together who are on the same journey and liberates those who feel isolated. The major event of the year is the Annual Meet Up and Conference. This past October HDU held its 3rd Annual Meeting. It consisted of its first awards banquet, a two day conference including an Innovation and Technology Program, and a trip to Washington, DC to advocate for home dialysis at a meeting hosted by the Congressional Kidney Caucus. The conference brings together dialyzors, care partners, nephrologists, nurses and other renal professions to share and learn from each other. HDU firmly believes renal professionals have much to learn from people on the other side of dialysis — those who actually do it. The HDU Outreach Program is reaching out to other organization where synergies exist to further its mission and advocate for improved patient outcome. Finally, HDU is producing its own regular webinars to further the education of patients, care partners and others regarding clinical and psychosocial issues affecting their lives.

HDU is an open group that respects others in the renal community. It has its specific space and welcomes others to join us. More information is available on its website — www.homedialyzorsunited.org.

About the Author Rich Berkowitz is the Founder and President of Home Dialyzors United, formerly NxStageUsers. He is involved in many facets of patient advocacy. He has been a member of the NxStage User Advisory Panel since its inception in 2008. He is the co-founder of the Friends of the Congressional Kidney Caucus and has served as the patient representative on the Satellite Grassroots Committee. He has served as a patient advisor to Redsense Medical and is on the Patient Advisory Board for Affymax. He is also a member of the ESRD Network 9/10 Patient Leadership Committee. He started dialysis in February 2003 and NxStage in February 2006.

Share Your Story! The Network is always looking for patient stories

for The Lone Star Newsletter. We need your stories in order to make a successful newsletter, pictures are always

welcome as well. If you would like to submit a story or make a suggestion for the Newsletter please contact Anna Ramirez at aramirez@nw14.esrd.net

or call 1-877-886-4435.

T H E L O N E S T A R N E W SL E T T E R

Ingredients: • 2 lb lean ground beef • 1/2 cup Parmesan cheese • 1/4 cup chopped parsley • 1/2 tsp sweet basil • 6 slices bread, soaked in water and wrung out • 3 eggs • 1 tsp salt • Dash of pepper • Flour Instructions: Preheat oven to 400°F. Combine all ingredients (except flour) in a bowl. Shape mixture into ball the size of walnuts. Roll each meatball in flour and shake off the excess. Bake uncovered for 15 to 20 minutes or until brown. Serving size: 4 meatballs.

Perfect for dinner or an appetizer at your next gathering!

Italian Meatballs From InBalance

Nutrients Info (1 meatball)

• Calories: 109 • Protein: 10 g • Fat: 5 g • Cholesterol: 5 mg • Sodium: 188 mg • Potassium:145 mg • Phosphorus: 103 mg

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Kidney Friendly Cooking Substitutions from National Kidney Foundation *Always seek out advice from your registered dietitian (RD) regarding your specific dietary needs.

Instead of this... Try this... Sour cream Low –fat sour cream/ cottage cheese Whole egg 2 egg whites Oil (for baking) Unsweetened applesauce Regular Jello® Sugar-free Jello® or gelatin Fruit packed in syrup Fruit packed in juice or frozen fruit without sugar added Sugar Honey or Pure Glucose Syrup or Agave Nectar: use 3/4

cup for 1 cup sugar

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E T J R F C A D P H T U E

H P B D I R E F O R M I X

C I I O C G Z X T D D M E

Q Y V P T J H H A M Q I R

X D E Z D E K T S C E P C

S P E A K U P D S T G F I

D H U C I S T B I C I W S

E W O N L A E C U Y K C E

A N E M I A O E M S N P C

O E M O E T D Y V D J A I

F L X C D A E H M C K T S

H O L I D A Y D E D C Y E

L R L P S N K P E O F J Q

Word Search

Word Find Reform Holiday

Speak Up Home

Potassium Anemia Exercise United Rights

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Network 14 Who We Are?

The End Stage Renal Disease Network of Texas (ESRD Network) is one of 18 agencies that work under contract with the Centers for Medicare & Medicaid Services (CMS) the federal agency that runs Medicare. Your ESRD Network, which provides support to the Texas dialysis and transplant community, is located in Dallas, Texas. The other 17 Networks are located regionally across the country. The Networks perform many important jobs for the dialysis and transplant community, including: • Collecting and analyzing data about dialysis and transplant patients and

their treatments • Evaluating the quality of care and services provided to dialysis and

transplant patients • Supplying professionals with clinical information and data they can use

to evaluate and (if needed) improve their services • Maintaining a grievance procedure to investigate patient complaints

about the quality of care provided by dialysis or transplant units The Network is made up of several volunteer committees-the Executive Committee, Medical Review Board, and Patient Advisory Committee. Each committee is made up of patients and professionals. The committees provide guidance and support to help the Network meet its mission and goals.

Our Goals

To improve the quality of care for persons with ESRD and to make sure that this care is medically necessary, efficient, high quality and consistent

with professional knowledge.

To provide CMS, the Texas Department of State Health Services, and the dialysis and transplant community with information and data related

to the Medicare ESRD program and the ESRD population.

Check out the Who We Are Webinar located on our website at

www.esrdnetwork.org, under the social worker tools and resources tab!

Resources and Important Numbers and Websites

Kidney School www.kidneyschool.org

One of the BEST resources available for almost everything you need to know about kidney failure, dialysis and transplant. This site is organized into interactive, self-paced chapters.

Texas Department of State Health Services (TDSHS)

1-888-973-0022 www.dshs.state.tx.us

Medicare Customer Service Line

1-800-813-8868 www.medicare.gov

Medicare Part D Updates and Information

www.medicare.gov

American Association of Kidney Patients (AAKP) 800-749- AAKP www.aakp.org

Renal Diet Information www.mrsdash.com

www.andrew.cmu.edu/user/sorensen/

Bureau of Kidney Health 1-800-222-3986

www.dshs.state.tx.us/kidney

United Network of Organ Sharing (UNOS)

1-800-292-9547 www.transplantliving.org

American Kidney Fund 1-800-638-8299

www.akfinc.org

The Renal Support Network (RSN) 1-818-543-0896

www.renalnetwork.org

Modality/Treatment Options www.homedialysis.org

This newsletter is published by The ESRD Network of Texas, Inc. #14 under contract #HHSM-500-2010-NW014C with The Center for Medicare & Medicaid Services