The PREPARE NOW study team, located throughout North America, have been hard at work developing a new patient-centered kidney care intervention for over a year. Because of the varied locations, most work is done over one-hour conference calls for many of the workgroups. Today though, many of the members convened in Durham, North Carolina - most of them meeting in person for the first time. This session was a way for the members to come together to see the progress that has been done so far, as well as discuss the roadmap for the future of the study.
In the long term, the findings in this study will provide important information on how to improve the health and well being of patients as they transition from chronic kidney disease to kidney failure. The intervention is scheduled to launch this June.
Mark your calendars now! World Kidney Day (WKD) is only one month away! WKD takes place every year on the second Thursday in March, and is a global awareness campaign aimed at raising awareness of the importance of all kidneys. This year's theme is "Kidney Disease & Obesity". Before the big day arrives on March 9th, we thought it would be a good idea to discuss what this day symbolizes.
What is World Kidney Day?
It is a global awareness campaign aimed at raising awareness of the importance of our kidneys. World Kidney Day comes back every year and events are formed all around the world. We do it all to create awareness; awareness about preventive behaviors, awareness about risk factors, and awareness about how to live with kidney disease.
Why is this day important?
Between 8-10% of the adult population have some form of kidney damage. If Chronic Kidney Disease is detected early and managed appropriately, the deterioration in kidney function can be slowed or even stopped. So this day (as well as everyday) we are working hard to spread awareness, tips, and support so everyone can be more informed of their kidney health.
What can I do to get involved in WKD?
You can be as involved in WKD as you'd like. Here are some ideas of ways you can get involved:
This blog post was submitted by: Clarissa Diamantidis, MD, Assistant Professor of Medicine, Duke General Internal Medicine and PREPARE NOW Collaborator.
Over 13,000 nephrologists and kidney disease researchers convened in Chicago, IL last week for the annual Kidney Week hosted by the American Society of Nephrology (ASN). Despite its name, event attendees hailed from both the United States and across the globe, eager to learn about current advances in the treatment of kidney disease.
Greeted by unseasonably balmy weather, I and several other PREPARE NOW team members were in attendance. A plenary address by current ASN President Raymond Harris, MD kicked off the four-day event. In his remarks, Dr. Harris spoke of the future of nephrology, and emphasized the need for more specialized training pathways for clinicians, improvement in patient safety parameters for patients with kidney disease, and the need to develop an alternative to dialysis for the treatment of kidney failure.
Throughout the conference, there was significant emphasis on the need to not just prevent and treat kidney disease, but to develop a cure. As an extension of this, many lectures surrounded the concept of precision medicine as it relates to kidney disease risk, with particular attention devoted to APOL1 risk variants in African Americans. At a luncheon hosted by the Diversity and Inclusion Workgroup of the ASN, Griffin Rodgers, MD, Director of the NIDDK, described the NIH’s Kidney Precision Medicine Project and the need to diversify the nephrology workforce. ASN President-elect Eleanor Lederer gave an update on the ASN’s strategic plan, and highlighted the ASN’s mission statement to “prevent, treat, and cure kidney diseases.” Other notable topics included outcomes following episodes of acute kidney injury (AKI), population health initiatives, and disparities in renal transplant outcomes.
Our own Principal Investigator, Dr. Ebony Boulware, spoke on the topics of health system innovation and patient engagement in kidney disease, and I was fortunate enough to to speak on the concept of mHealth to reduce disparities.
As always, it was great to connect with old friends and colleagues and to share in our mutual passion for kidney disease research. I look forward to doing it again next year in New Orleans!
Submitted by PREPARE NOW Stakeholder, Kelli Collins, MSW, Senior Director of Patient Services at National Kidney Foundation
The National Kidney Foundation (NKF) has a long history of putting patients first by advocating on behalf of kidney patients; providing education, information and resources to them; and educating healthcare professionals. Being part of the Prepare Now research study with Duke University and Geisinger Health Systems fits in perfectly with our patient-focused mission and we welcome the opportunity!
We are especially interested in helping to figure out the best methods for educating people facing kidney failure about their treatment options. As part of the Prepare Now intervention, study participants will be given the opportunity to talk with someone who has been on dialysis or who has already had a kidney transplant. Additionally, if they have a friend or family member who is considering living organ donation, NKF Peers can match their loved one with a living donor who has already been through the process and can share their experiences first-hand.
Facing kidney failure can be overwhelming. There is a lot to learn and difficult choices to make. It’s helpful to know that there is help out there and that there are other people who have also walked down a similar path. Talking with someone who has been through a similar situation can be a powerful experience. NKF’s successful peer mentoring program, NKF Peers, has been matching people interested in receiving support for over five years now. We are thrilled to share the success of our program with study participants and we encourage anyone interested in talking with someone about dialysis, kidney transplant, or living donation to contact us. We look forward to helping! NKF Peers 1-855-653-7337 or firstname.lastname@example.org.
This blog post comes to us from our Co-Investigator, Peter Woods.
During my years as a Sergeant for the NYPD I thought I saw and experienced everything. As a matter of fact, I think I saw too much. I was a first responder at 9/11and spent months working at Ground Zero. I decided to retire when my job was done at Ground Zero. I was hired by the US Marshall service as a subcontractor to do Court Security at the Federal Courthouse in lower Manhattan. I had major plans to move on with a new career and spend more time with my family. There is an old saying “When you make plans God laughs”. One day I wasn’t feeling well. I went to the doctor and had several tests conducted. I was diagnosed with an auto-immune Kidney disease and an auto-immune Lung disease. So much for working at Ground Zero and the EPA stating that the air was fine, but that is a subject for another day.
As I was being treated for my Kidney disease I brought up the question of Dialysis. It was not really addressed and I was told that my numbers are ok and not to worry about dialysis. So I went on with my life until I ended up in the emergency room. My Nephrologist met with me and she told me that my numbers were very bad and I have to start dialysis. The date was June 17, 2008 and I had no idea what I was in for. I had so many questions and sometimes got bad information. I remember asking about dialysis just before surgery to insert a chest catheter. One of the staff told me not to worry because I can get a kidney transplant and things will be fine. Are you kidding me? Like kidneys grow on trees and you can just pick one out for yourself.. I decided I needed to educate myself. I call this my Shock and Awe period in my life.
First, how to deal with dialysis. I felt I no longer have control over my life and I need to take it back. I had to learn how to accept dialysis and I have to make it my best friend because it is keeping me alive. I also had to learn how to deal with loss. The loss of a job, the loss of your freedom, and eating and drinking. So many restrictions on so many aspects of my life. I also had to deal with the affects of dialysis on my family. I had to explain to my children who were small at the time that I will not be around every other day for four hours and when I come home I will not be feeling well. I explained to the kids that I need my blood washed and it goes through a machine to wash it. My youngest came up with the name wishy washy. So when she didn’t see me she would ask me if I had to go to wishy washy. I think this is how she dealt with my dialysis.
For me, it was on the job training when it comes to dialysis. Every dialysis patient knows what it is like. I still to this day cannot believe how ignorant and misinformed I was. This is why I volunteered for this study. I do not want another patient to go through what I went through. Knowledge is true power. Especially when it comes to dialysis.
This blog post comes to us from our Co-Investigator, Teri Browne, PhD, MSW
Last week, I had the exciting chance to attend the Advancing the Science of Community Engaged Research Innovative and Effective Methods of Stakeholder Engagement in Translational Research conference in Washington, DC at the Association of American Medical Colleges. PREPARE NOW Principal Investigator L. Ebony Boulware and project director Patti Ephraim were also in attendance, and together we learned more about doing research with community partners and ways to conduct research that means the most to communities.
I was honored to present as part of a panel in a Learning Lab session, “Partnering with Patients, Families, and Other Stakeholders in Healthcare Systems Research: Examples and Lessons Learned from Six PCORI-Funded Studies.” In this Learning Lab, I talked about the work that we are doing in PREPARE NOW, joining PCORI representatives and researchers from five other PCORI-funded projects from U.S. We were excited that we had a full room of people attend this session, and that I could share information about the ways we have been collaborating with patients with kidney disease, their family members, and community stakeholders to help change a health system to improve kidney care.
Attending this conference with Ebony and Patti was very inspirational as we listened to ways that we can better help the patients and family members working with us be part of our research project, and it was very exciting to share information about our project to this national audience!
This blog entry comes from one of our Patient Co-Investigator’s, Brian Bankes’, step-daughter, Albree Boone, written from her perspective on living with a loved one with kidney disease.
When a loved one is diagnosed with kidney disease, there are a lot of situations, emotions and scenarios that others may not understand. My step father, Brian, had already had his first kidney transplant when I first met him when I was 11. Over the last 23 years, our family has been through a second transplant, numerous types of dialysis and countless surgeries.
After the long hospital stays, the late night phone calls and plentiful doctor appointments, it is easy for family members to become desensitized to the severity of kidney disease. We become numb to sitting in waiting rooms waiting for the doctor to come tell us the results of a surgery. We don’t immediately leave work when my mother calls to say they are on their way to the emergency room because Brian’s dialysis port is clotted. We don’t even blink an eye when it’s time for another test or another meeting with a nephrologist.
It’s certainly not a lack of love or compassion for someone who has been a wonderful father even though he didn’t have to love us like we are his own. It’s the constant barrage of surgeries, exams and procedures. We weigh the severity of each situation. Other families drop everything for a medical procedure on a loved one. They worry and obsess over an upcoming surgery. For us, it’s a lifestyle. We gauge the procedure, exam or surgery on a case by case basis and react accordingly.
I often feel that others without a family member with a chronic disease see us as callus when we don’t drop everything at the first phone call. Unfortunately, this is a way of life for us. Even my step-father, Brian, has become desensitized to his own procedures and urges us to continue our daily routines. We have come up with our own coping styles and support systems. Our family has adapted our thoughts and processes in order for kidney disease to not run our lives. We will remain optimistic and continue the battle with a disease that will forever be part of our family.
Post submitted by PREPARE NOW Co-Investigator, Suzanne Ruff.
It’s an honor to be a Co-Investigator on the Prepare Now study. Kidneys are my passion. But, it wasn’t always so. Kidney disease has broken my heart. It has taken the lives of some of the people I loved most. Nine beloved family members (including my mother) have died of a genetic disease called polycystic kidney disease (PKD). My sisters and three of my cousins battle PKD now.
I used to worry, cower and hide from reality in a very immature manner amid my fears of kidney disease. Then, one day, I had to face reality. My sister had collapsed in renal failure.
I was named after a grandmother I never met. She died of kidney disease in the 1940’s before I was born. Dialysis was just being invented. Later, five of my grandmother’s six children inherited polycystic kidney disease and were proactive in advancing medical treatments and advocating for patients. I chronicled the challenges we have faced through the past seventy years in my book, The Reluctant Donor, so no one ever forgets how far we’ve come in the battle against kidney disease.
Reflecting on the past helped me make my decision to become a living kidney donor to my sister. Participating in the Prepare Now study is my way of helping the next generation - just as it was done for me through the grace and courage of my family.
Post submitted by PREPARE NOW Principal Investigator, L. Ebony Boulware, MD, MPH
Today, co-Investigator Jerome Bailey from the American Association of Kidney Patients (AAKP) and I have been on Capitol Hill, educating our nation’s legislators on the importance of protecting live kidney donors. The American Association of Kidney Patients (AAKP) and the American Society of Nephrology (ASN) have teamed up to support the Living Donor Protection Act (S. 2584/H.R. 4616), which aims to protect donors by (1) ensuring they are not denied or given limited coverage or higher premiums for life, disability and long term care plans, and (2) allowing donors to use Family and Medical Leave Act (FMLA) time to recover from their donation surgery and maintain job security. The Act will also direct the Department of Health and Human Services to create educational materials reflecting donor protections to encourage more Americans to consider becoming living donors. Jerome and I had the pleasure of visiting 6 legislators from North Carolina, Florida, and Washington DC who were eager to hear about the Act. It was encouraging to hear support for this important Act among our nation’s leaders, and I felt honored to advocate for live donors in this way. Let’s hope we can make a difference!
This blog entry comes from one of our Patient Co-Investigators on the study, Lana Schmidt, who after 13 years of dialysis- finally got the kidney she has waited for.
With kidney disease, some people are fortunate to have a straight and narrow path, no twists or turns on getting a kidney transplant. They receive the call, get transplanted, and go home, while I on the other hand was placed on a twisted and complicated road.
After a battle of life and death each day being on a dialysis machine for over 13 years, I was told there was finally a way off this road, but it would cost $110,000 dollars for a special drug, soliris. It was an orphan drug that would suppress my antibodies, so I would not reject the kidney, which was what I needed for the lengthy list of antibodies I have. Desensitation (removing of antibodies) would not work for me.
If it wasn’t Dr. Enrico Benedetti’s medical ingeniousness and his willingness to try this drug with a deceased donor, I’d still be struggling to stay alive. I encourage every person to push through the obstacles that are placed on your road to getting a transplant and get your life back; after what I’ve been through, I believe all things are possible.
Lana's story was also covered in UIC News Center- check it out here!