ESRD NETWORK 16SPRING 2019 Patient Newsletter

Dialysis Options: Taking control of your life!

Have you received your Pneumococcal Vaccine?

My Life, My Dialysis Choice is a free, online decision aid developed by the nonprofit Medical Education Institute (MEI). People with chronic kidney disease (CKD) and end stage renal disease (ESRD) use the tool to see how various types of dialysis fit their lifestyle and health values.

Patients with late-stage CKD and patients currently on dialysis are faced with choices that will affect their lifestyles and longevity. This decision aid helps with considering how dialysis may affect family life, personal values, health and lifestyle.

“The type of dialysis has a huge effect on quality of life, and can influence a patient’s ability to keep a job, maintain a normal family life, and continue to enjoy the things that make life worth living,” said MEI Executive Director, Dori Schatell. Find it at http://mydialysischoice.org.

Log on and consider your options. Choosing the right treatment for you can help you feel your best and live the way you want.

Report Grievances

This vaccine will help to protect you from an infection caused by bacteria called Streptococcus pneumoniae. This bacteria can be the cause of several illnesses including ear infections and meningitis. Talk to your dialysis staff about making sure that your vaccine is up to date so you can be protected. You need two shots to complete the vaccine.

“In 2008 I was diagnosed with ESRD. I was advised dialysis would be required to sustain my life. After researching the different treatment modalities, I spoke with my doctor then decided to choose Peritoneal Dialysis (PD). This modality best fits my personality and lifestyle. On PD, I am responsible for all aspects of my treatment as I like to know exactly what’s going on from setup and connection to disconnection and cleanup. I have the flexibility to determine the time and place of my daily dialysis. Daily dialysis allows for the continuous cleaning and removal of waste, water and other “yuck” to help my body function as “normal” as possible. If I want to or need to rest after treatment, I have the luxury of remaining in my bed or in my chair until I am ready to move, whereas if I was in-center hemodialysis, I must immediately leave their chair to allow the next person to begin their treatment. I have had great results with PD and recommend it to anyone who is responsible and willing to participate in their own health care and health outcomes.” –Toni Binns, Patient Advisory Committee Member, Network 18

To file a grievance about your dialysis facility, contact Network 18 by calling:

1-800-262-15144702 42nd Ave SW, Seattle, WA 98116 www.nwrn.org

SPRING 2019

ESRD NETWORK 16

Join Our Blog!

Get Our Newsletter!

Go to https://nwrnbulletins.wordpress.com/ and click Follow in the bottom right corner of the screen to receive Blog alerts.

Do you want to receive the Network 16 Patient Newsletter by email?

Contact Ashley Thomsen at athomsen@nw16. esrd.net to sign up today.

Kidney TransplantKidney Transplant is another treatment option for patients with kidney failure, and very important to consider. If you aren’t already on the transplant list, you may have a lot of questions. Am I eligible? How long is the wait? Can I get a kidney from a living donor?

The Centers for Medicare & Medicaid Services requires that all dialysis patients are educated on the option for transplant every single year. But you don’t have to wait for them to come to you, you can talk to your treatment team about getting listed for a transplant at any time! Determining if transplant is a good option for you is a very personal choice and getting all your questions and concerns answered is a very important step. Contact us to get more information about the option for transplant.

• Talk to your social worker at your dialysis center about the process forgetting on the transplant list and get your questions answered.

• Contact transplant centers in your area. Many of them offereducational classes.

• Find a local support group or call a peer-mentor line so you can talk toothers who have a transplant or are on the waitlist.

• Do your own research. (Seek education from reputable resources.)Many kidney organizations have a lot of great information.

• Visit our website to get a list of transplant centers in our area alongwith their listing criteria: https://nwrn.org/patients-a-family/treatop/txselcrit.html

• Feeling overwhelmed? Call the Network! We can gather and mail yousome resources to review.

If you are already on the transplant waitlist, you must stay informed on your status. You have several requirements to do throughout the year to ensure that you stay active on the list. Continue dialysis as prescribed, and follow your treatment plan. Stay current on your annual exams and ensure the transplant center is receiving your records. Check in with the transplant center to ensure nothing is missing from your file. Remember, you can also get a kidney from a living donor. If you want more information on getting a kidney from a friend, family member or even a complete stranger, please call the Network for resources.

Ideas to help you get started

Get Involved!

Are you interesting in helping the Network improve patient care? If so, we may have an exciting opportunity for you to get more involved.

Please call Lisa Hall at 1-800-262-1514

for more information on opportunities that are currently available.