stay connected
In This Issue


Quick links


We Want your Feedback

Tell us what information you 
liked in this newsletter and 
what topics you would like 
to read about in the next 
Network 4 patient newsletter. 
Please leave us feedback by 
taking this short survey: 
Scan the QR code below to quickly access our website


Welcome to the March 2018 edition of the Quality Insights Renal Network 4  Network Notes patient e-newsletter. In this issue, we bring you information about Network 4's Patient Representative Program, a patient testimonial and a new patient navigation program for Medicare patients in Delaware.  We encourage you to  contact us (http://www.qirn4.org/Contact-Us.aspx ) with any questions, concerns or suggestions. 

PatientRepProgramlearn more about network 4's patient representative program
Quality Insights Renal Network 4's Patient Representative Program is made up of people who are on dialysis or have had a kidney transplant and have been chosen to serve as Patient Representatives at their clinic. Our goal for this program is to have Patient Representatives spread the word that Dialysis Means Life (DML). Patient Representatives volunteer to serve as liaisons to Network 4 and the dialysis facility administration. The Network provides Patient Representatives with information from the Network and its various committees. The information may be in the form of news from the Centers for Medicare and Medicaid Services (CMS) or educational materials to be handed out to fellow patients. 

Patient Representatives may be asked to:
  • Assist with special projects at the dialysis facility.
  • Act as mentors, particularly to new patients, introducing them to Network activities and publications, including the Network 4 patient rights and responsibilities, Network 4 grievance procedures and the Network newsletters.
  • Bring patient concerns and questions to the facility administration during Quality and Governing Body meetings.
  • Contact the Network at the toll-free number to report patient concerns or questions from your facility.
Learn more about the Network 4 Patient Representative Program by watching this video ( https://youtu.be/Iuu7M2kjqzQ).
FacebookHave you found us on facebook? 
Network 4 posts the latest happenings and interesting insights for the dialysis community on our Facebook page (www.facebook.com/ESRDNetwork4/). If you haven't already, please check us out and "like" our page to make sure our posts find their way to your news feed. You can read articles like this and more: 

PatientTestimonialPatient Testimonial: "Kidney carrie"
Carrie and her kidney donor, Keith
I am Carrie Flanagan - otherwise known as "Kidney Carrie." I am 39 years old and have had diabetes since the age of nine. When diagnosed, doctors tell you all the side effects that may happen as a result of diabetes. You know - loss of vision, heart disease, neuropathy and... oh yes, kidney disease and failure.

In 2011, I went to my nephrologist and was informed that my kidneys were functioning at 70 percent. By 2013, I was down to 40 percent. At that point, my nephrologist recommended that I have gastric bypass surgery to help prolong the life of my kidneys. At the time, I weighed approximately 280 pounds. The extra weight was putting a strain on my kidneys. I started my weight loss journey in June of 2013, and my bypass surgery was in November that same year. However, my kidneys took a hit after surgery and I was down to 30 percent function. But because of the surgery, I was able to lose 80 pounds and stay stable at 30 percent for a while.

Two years later, in February 2015, my wife Tami and I were getting ready to go on our third cruise. Around this time, my nephrologist had informed me that my kidney function had dropped to 13 percent. He suggested it was time to have a fistula put in and that I should start thinking about dialysis. He also suggested I reconsider going on the cruise. But after rechecking my blood work, I was informed that I was at 20 percent, which meant I did not have to start dialysis right away.

Carrie and Keith prepare for surgery.
Since I have always been the person who never lets things stop me from doing what I want to do, we went on the cruise a few weeks later. We've cruised with this particular group of people for the past two years. We were all listeners of an internet-based talk show, The Derek and Romaine Show - also known as "DNR 2.0." Since 2013, DNR 2.0 has been doing a cruise for listeners. This is where I met Keith Schindler, my kidney donor.

While on the cruise, I told my friends that this would be my last cruise for a while. I explained that I was going to have to start dialysis soon. One night on the cruise, I was talking to Keith. "If I am a blood match, I will give you one of my kidneys," he said. The thought of having someone who I had met only two years ago offer to give me a kidney without even thinking about it just filled my heart with love and brought me to tears.

After the cruise, I went to Geisinger Medical Center (GMC) to get on the transplant list for a kidney. I chose GMC because my father had a kidney transplant there 13 years prior. I was impressed with the level of care and compassion they offered him.

In June 2015, I was officially on the transplant list. I was going to wait for a deceased donor, until I found out that my blood type was O. My wait time for getting a kidney went from one to three years to six to eight years because of my blood type. At only 37 years old, I didn't want to be tied to a dialysis machine that long. So, I thought seeking a live donor would be the better option.

I turned to Facebook and posted the following message. "If anyone is wanting, willing and able to donate a kidney and is blood type O, please get in contact with me and I will give you the number to call GMC." Even my good friend Romaine, who happens to be one of the hosts of DNR 2.0, posted a message on Facebook to help me find a kidney.

I had 13 people call about donating. Twelve were listeners of the talk show. The transplant center collected all of the information from the people who called. They had two top choices, which included a woman who was closer to my age and Keith. Due to a variety of factors, GMC had to reject the first choice. So, I called Keith to find out if he was still interested. "Oh yes," he said. "What do I have to do?"

He immediately contacted the transplant center, got a blood type test and found out he was blood type O. As it turns out, Keith was actually a better antigen match than the first choice. In April 2016, Keith flew to Pennsylvania from California to finish his testing. On May 19, we got the call that the transplant was a "go." On June 3, 2016, Keith gave me the gift of life. Everything went smoothly, and while I was supposed to be in the hospital for five days, I got out after three. My blood work instantly improved. I had so much energy and had color back in my face.

I am thankful every day that we went on that cruise four years ago. Keith and I are both doing great and we even got to see each other again on a cruise in February of 2017. We now call each other "kidney twins." Keith is my hero. I wish more people in the world would be as thoughtful and selfless as Keith.

I now take my time and tell my story to everyone who will listen. I have devoted my life to becoming an advocate for organ donation. If my story can help and touch one person and help him or her decide to become an organ donor, then I think it is worth the time it takes for me to reach out to him or her.
DEKeproPATIENT NAVIGATION PROGRAM now being offered for medicare patients in delaware  
Understanding your doctor and making your way through difficult medical systems and treatments can be very overwhelming. If you live in Delaware, KEPRO's Patient Navigation program can help you be a partner in and take control of your own health.

KEPRO's Patient Navigators can:
  • Help coordinate your care
  • Offer tips on how to manage medications
  • Help you better understand a diagnosis or treatment plan
  • Provide resources and information to help you understand, treat, and prevent diseases
  • Help improve your quality of life
If you are a person with Medicare and want information on KEPRO's Patient Navigation program, please fill out the form on this website (https://www.keproqio.com/pfe/patientnavigation/) or contact the KEPRO helpline by calling (844) 455-8708. 

Do find this newsletter helpful? Are there things you'd like to see changed? Please take this short survey (http://bit.ly/Net4Feedback) to provide your feedback. Please submit any items of interest for this newsletter to Tish Lawson (plawson@nw4.esrd.net). 

FilingGrievances Filing Grievances
To file a grievance, please contact us by using the following contact information.  
 
 
610 Freedom Business Center,  
Suite 102 
King of Prussia, PA 19406 
(610) 265-2418 
(800) 548-9205 (patients only) 
(610) 783-0374 (fax) 
This material was prepared by Quality Insights Renal Network 4 under contract with the Centers for Medicare & Medicaid Services (CMS). The contents do not necessarily reflect CMS policy. 

Publication No. ESRD4-032618