PREVENTATIVE CARE AND DISEASE MANAGEMENT · transplant floor at Methodist Hospital, the staff...

JULY 2015ISSUE 1PATIENT NEWSLETTER

In January 2015, ESRD Networks 6, 8, and 14 came together to form the Alliant Quality Kidney Collaborative (AQKC). By working together, we can make a BIG difference in the lives of dialysis and transplant patients in seven states: Alabama, Georgia, Mississippi, North Carolina, South Carolina, Tennessee, and Texas! Every staff member and patient can benefit when we share what we learn with other ESRD Networks. If you would like to know more about AQKC, you can visit our website at http://aqkc.org/.

WHO IS AQKC? PARTNERING TO IMPROVE THE LIVES OF PEOPLE AFFECTED BY ESRD

Who is AQKC?

Preventative Care and Disease

Role of Network

Grievance Process

Treatment Options

Voc Rehabilitation

Dialysis Facility Compare

Word Search

Recognition

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IN THIS ISSUE

Studies show patients who undergo dialysis treatment have an increased risk for healthcare associated infections (HAI). The frequent use of catheters or insertion of needles to access the bloodstream puts hemodialysis patients at a high risk for infection. Dialysis patients and staff’s top priority is to provide and receive safe care to avoid infectious complications.

Every visit to the dialysis facility can put you at risk for HAIs, but you can minimize that risk by following some simple steps.

1. Wash and sanitize your hands upon entering the treatment floor.

2. Wash and sanitize your hands upon leaving the treatment floor.

3. Wash and care for your access upon entering and leaving the treatment floor.

4. Speak up and request staff members to practice good infection prevention, such as:

• Proper glove and mask use• Practicing hand hygiene• Practicing proper catheter care

5. Notifying your healthcare team if you notice any signs or symptoms of infection

The CDC recognizes the serious health implications associated with HAIs and has developed many tools to help you reduce the risk for HAIs. Work with your dialysis healthcare team to reduce infections through ongoing education and practicing positive infection prevention techniques.

Visit the Centers for Disease Control and Prevention (CDC) website for excellent resources on dialysis safety and HAIs at http://www.cdc.gov/dialysis. This website contains access education, clinical education, guidelines and recommendations, and prevention tools, such as the Patient Pocket Guide: 6 Tips to Prevent Dialysis Infections, (http://www.cdc.gov/dialysis/PDFs/Dialysis-Patient-PocketGuide.pdf).

Please visit the CDC’s Dialysis Safety website, http://www.cdc.gov/dialysis/, for additional infection prevention resources, including a free continuing education (CE) activity for professionals and several observation tools, checklist tools, and protocols.

PREVENTATIVE CARE AND DISEASE MANAGEMENT

AQKC Patient Newsletter

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ROLE OF THE NETWORKSThere are 18 End Stage Rnal Disease Networks that work under contract with the Centers for Medicare & Medicaid Services (CMS), the agency that runs Medicare. Each ESRD Network provides services to dialysis and transplant patients in its area.

Our job is helping make sure that kidney patients learn to manage their kidney problems and get good health care at their dialysis clinics, We work with clinics and patients on projects to help you get better care. Some of the things we help with include:

• Evaluating the quality of care and services ESRD patients receive

• Giving facility staff information and helping them with projects to improve your care

• Investigating complaints filed by patients in an effort to resolve any issues the patient is having at the dialysis or transplant center

You can contact the ESRD Network in your state at:

TEXAS

ESRD Network of Texas, Inc. (ESRD Network 14) 4040 McEwen Road

Suite 350Dallas, TX 75244

972-503-3215 office

877-886-4435 toll-free972-503-3219 fax

[email protected]

www.esrdnetwork.org

Like us on Facebook!Follow us on Twitter: @ESRDNetworkofTX

ALABAMAMISSISSIPPITENNESSEE

Network 8, Inc.

(ESRD Network 8)

775 Woodlands ParkwaySuite 310

Ridgeland, MS 39157

601-936-9260 office877-936-9260 toll-free

601-932-4446 [email protected]

www.esrdnetwork8.orgLike us on Facebook!

GEORGIANORTH CAROLINASOUTH CAROLINA

Southeastern Kidney Council, Inc.

(ESRD Network 6)

1000 St. Albans DriveSuite 270

Raleigh, NC 27609

919-855-0882 office800-524-7139 toll-free

919-855-0753 [email protected]

www.esrdnetwork6.orgLike us on Facebook!Follow us on Twitter:

@ESRDNetwork6


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

Lastly, if none of the above actions work, or if you feel your clinic or corporation cannot help you, call your ESRD Network toll-free for help.

ESRD Network of Texas, Inc. (ESRD Network 14)1-877-886-4435 Toll-free Patient Number

Texas Department of State Health Services (DSHS)1-888-973-0022 Toll-free Number

WHEN YOU CALL THE ESRD NETWORKYou will speak with a member of the Patient Services Team who will conduct an over-the-phone interview. Based on the grievance, the Network may investigate the grievance or refer the case to another state agency that can assist the grievant (the person filing the grievance). The team member will mail an ‘Acknowledgement of Grievance’ letter or a ‘Notification of Referral’ letter to the person filing the grievance. This letter will also include a consent form for you to sign in order to reveal or not reveal your identity. THEN WHAT HAPPENS?The Network has up to 60 calendar days to investigate a grievance. Once an investigation is completed, the Patient Services Team member will send a decision letter to the facility. The facility has up to 15 business days to review what the investigation has determined.

After these 15 business days, the grievant (the person filing the grievance) will receive a ‘Grievance Summary Letter’ with the decision.

I’M HAVING A PROBLEM WITH MY FACILITY. WHAT DO I DO?

• 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 the following actions: requesting medical records or interviewing staff members or patients and asking for details about a grievance, or visiting a clinic in person

WE CAN:

• 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 any facility staff member “fired” or transferred

“Confidential” means we will not tell anyone at the facility or clinic your name, unless you give us permission to do so.

WE CANNOT:


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MY JOURNEY OF FAITH, HOPE, AND HEALTHMIRACLE KIDNEY TRANSPLANT

In April 2009, I was placed on a kidney transplant list due to hereditary Polycystic Kidney Disease (PKD), with my kidneys functioning at 8%. PKD took my dad in 1960 at age 40, one year before immunosuppressants became available and two years before outpatient dialysis facilities became available, leaving Mom with three teenagers.

In mid-June, my vascular surgeon scheduled me for a third surgery preparing a fistula for dialysis.

“I can’t have surgery now,” I protested. “My husband and I are going to an out of town wedding on July Besides, maybe I’ll never need to go on dialysis,” I boldly added. He just smiled and shook his head, by now used to hearing about my faith in a God who hears and answers prayers.

The Saturday before our friend’s wedding, I was relaxing on my comfy recliner in the living room, absorbed in the dramatic conclusion of a heart-touching fiction by my favorite Christian author, when the phone rang. The caller I.D. indicated “Texas Call.” “Telemarketer,” I grumbled. I’m not answering, I determined, when an inner voice boomed, “Answer this call!”

“Hi,” said a pleasant woman with a smiling voice. “This is Heather with Methodist Transplant, and I have good news for you, Susan,” she said. “We have a perfect kidney match for you!”

My body started shaking. Am I still breathing? This can’t be happening. I’ve been on the

transplant list for only two months and ten days, and I haven’t even started dialysis yet. I took a deep breath. “O ye of little faith,” I could almost hear the Lord saying.

“Could you wait while I tell my husband?” I asked, already pushing myself off the recliner.

“Of course,” she calmly replied.

I burst into the Ron’s office/music room where he was playing his guitar. The stunned look on Ron’s face mirrored my own when I shared the exciting news.

Could this be God’s answer to our prayer? Was a transplant God’s plan for my miracle healing?

I called our daughter Sarah. “You’re not going to believe this, but…”

Like us, she was stunned and excited and told me to get down there and get my kidney.

Following Heather’s instructions, I packed a bag, and Ron and I hopped into the car and headed for Methodist Hospital in South Dallas to get my miracle kidney.

I glanced at Ron. “I guess we won’t be going to the wedding next weekend.” We laughed, excitement, joy, fear and a plethora of emotions exploding between us as we praised and thanked God all the way to the hospital. After all, we’d been told

BY SUSAN DECUIR


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that I would be on dialysis for three to five years waiting for a match.

Just four days earlier, I was at the pool with my daughter and grandchildren, determined that PKD wasn’t going to stop me from enjoying life. When three-year-old Evan tugged on my hand and begged, “Slide with me, Nana,” like a trained puppy I followed, wading through the mass of animated children visiting the city pool that steamy June afternoon. I pulled Evan into my lap, his sky-blue eyes sparkling, wrapped my arms around his waist and pushed off into the dark, winding tunnel, giggling as we flew through the cool water then—Splash! We landed in a heap in the refreshing pool. “Do it again, Nana,” Evan pleaded. “Are you sure, Mom?” Sarah asked.

“I’m sure,” I said with a smile. Afterward, one-year-old Emma delighted splashing in the water with Nana. I wondered, how could I be as sick as my nephrologist says I am? I felt much too wonderful that joyful day for any thoughts or cares about kidney disease, impending fistula surgery, dialysis, or kidney transplant to cloud my day — and soon it would all be behind me.

On Saturday, June 27, 2009, I entered the transplant floor at Methodist Hospital, the staff greeting me like I was royalty. Further testing proved that I was healthy enough for a transplant. The following day, Sunday, June 28, 2009, I received my miracle kidney transplant.

I spent one night in I.C.U.; the doctors and nurses were astounded by my quick recovery. While preparing to go home four days after surgery, Heather stopped by to say goodbye. “It’s very rare that we get to tell a patient that we have a perfect match. The donor could have been your twin. All six antigens matched perfectly.” We hugged, and she wished me well.

Within five weeks, I was driving and playing with my grandchildren. In week six, I was exercising at the senior center. I thank God for my new life and plan on living it to the fullest, telling everyone I meet about my miracle due to a generous stranger who had the foresight and compassion to sign a donor card, something I’ve done since

my transplant. Have you signed a donor card yet?

Thank you Lord that you are “… able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us.” Ephesians 3:20

I live in Carrollton, Texas, with my husband, Ron, a retired engineer. I occasionally fill in for the receptionist at a construction company. I love reading, writing, attending writers support groups, Bible studies, traveling (most recently to Maui), exercising at the senior center, and playing with my grandchildren, Evan, Emma, and Ava.

WE HAVE SPACE FOR A PULL QUOTEOR PHOTO


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Did you know it is still possible to work on dialysis? Working, being a part of your community by volunteering, and going to school can all make you feel better about yourself.

Many dialysis patients work, volunteer, or go to school. You may have to change your work schedule, but it is worth it. Patients that work find they have better

quality of life and better treatment outcomes. If you choose to work, you should know:

• You will not lose your Medicare benefit based on ESRD.

• Employers cannot legally discriminate against you. In fact, many employers are willing to work around your dialysis schedule.

If you stopped working when you started dialysis and you are now ready to get back into the workforce, think about contacting your state vocational rehabilitation program. This service can help with getting back to work and can provide training for new skills. In some cases, they will provide financial help for college or technical school. Their goal is to help people continue their education, keep their jobs, or get new jobs. Talk with your social worker about your state’s vocational rehabilitation program or contact their office for more information.

GETTING BACK TO WORK!

TEXAS TEXAS DEPARTMENT OF REHABILITATION SERVICES: TOLL FREE: 800-628-5115

Dialysis Facility Compare (DFC) is a service of the Centers for Medicare & Medicaid Services (CMS), an agency of the U.S. Department of Health and Human Services (HHS). It helps you find detailed information about Medicare-certified dialysis facilities. You can compare the services and the quality of care that facilities provide. It also has other resources for patients and family members who want to learn more about chronic kidney disease and dialysis. Look at the information on Dialysis Facility Compare carefully. Use it and other information when you decide where to get dialysis. You can get information about the following:

• Dialysis facility characteristics and services• Quality measures, including best treatment

practices, and hospitalizations and deaths

If you’re a patient or someone helping a patient with his/her healthcare decisions, you can:

• Review the services and performance of dialysis facilities near you

• Look at information on other websites about dialysis quality

• Read information from Medicare about kidney disease, Medicare coverage of dialysis and kidney transplant, and other topics

Talk to your doctor and local dialysis facility staff about what this information means and how you can use it to make healthcare decisions.

Learn more at: http://www.medicare.gov/DialysisFacilityCompare/search.html

DIALYSIS FACILITY COMPARE (DFC)

INFECTION PREVENTION WORD SEARCH


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SUPER STAFF AWARDSuper Staff: Fresenius Medical Care Tyler Home Dialysis by: Patient V. B.

“I can honestly say that all of the staff at Tyler Home Dialysis have the best professional and caring attitudes. I feel loved and cared for every time I have my monthly appointment. I leave from each appointment confident and uplifted concerning my health. From the secretary (Shawn) that greets me when I enter, to my very caring nurse (Sandy) and former nurse (Kathy C.), to the very gentle and bubbly nurse (Cynthia) who draws my blood, to the social worker (Marilynn) who takes care of all my insurance and psychological issues, to the dietician (Jennifer) who makes sure my labs are staying on target, and finally last but not least, my wonderful doctor (Roy Gerard) who oversees and makes sure I stay healthy, they are all TOP NOTCH!!!!!”

Super Staffer: Michelle Spivey, Patient Care Technician, at Lake Cliff Dialysis Center by: Patient M. K.

“She has good information to share with you based on your health and when you listen to her, you get good results back on your labs and health and you feel better after listening to her and following her advice.”

How to nominate your staff: If you would like to nominate a staff member that went above and beyond the call of duty to provide excellent care to you or another patient or family, please send your name, the Super Staffer’s name and position, facility name, and a brief description of why you want to nominate him or her to [email protected] or fax to 972-503-3219.

THE PATIENT ADVISORY COMMITTEE (PAC) NEEDS YOU!The Patient Advisory Committee (PAC) is a group of patient and family volunteers that share their ideas with ESRD Network 14 to improve the quality of dialysis care in the state of Texas.

Patients and families across Texas are invited to apply for membership. We want PAC members from all regions of Texas to make sure that we understand what is most important to our patients and their loved ones.

If you are interested in joining the PAC, you can apply by:1. Sending a letter of interest to the Network to explain why you would like to join the PAC, and2. Sending two letters of recommendation (one from your kidney doctor and one from a dialysis staff member) to us at:

ESRD Network of Texas, Inc. (ESRD Network 14) 4040 McEwen Road, Suite 350Dallas, TX 75244 972-503-3215 office877-886-4435 toll-free972-503-3219 fax [email protected]

2015 PAC Members

Ana Rodriguez–Past Chair, Austin area

Anna Gonzalez–San Antonio area

Bobbi Wager, RN, MSN–Chair, San Antonio area

Bonita Montgomery–Dallas area

Corvin Morton–Dallas area

Daniel Foster–Houston area

David Reaves–Chair-elect, Austin area

Devon Osborne–Secretary, Dallas area

Jorge Garcia–Upper Valley area

Leigh Anne Tanzberger–Houston area

Pamela Echols–Dallas area

Precious McCowen–Dallas area

Robbie Robinson–Houston area

Susan Reat–Austin area

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