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!
Happy World Kidney Day!
Patients with kidney disease often don’t understand kidney disease, don’t have the support they need to obtain care, and aren’t prepared to make important treatment decisions. PREPARE NOW is a study to understand how we can improve the kinds of healthcare people with chronic kidney disease receive. This study is working with Geisinger Health System in Danville, PA, to study exciting new ways to help patients receive the best possible care for their kidney disease that can be employed in health systems across the US. "Our study is special, because we have patients with kidney disease and family members of patients with kidney disease on our study team," says L. Ebony Boulware, MD, Chief of the Division of General Internal Medicine at Duke University and one of the Lead Investigators on the PREPARE NOW study. "We think this will help our study be as effective as possible."
Patients, doctors, and researchers have known for some time that kidney care can be improved, but haven’t necessarily studied how to improve it through comprehensive strategies that address patients' educational, emotional, support, and medical needs. "We are excited to have this opportunity to see whether new approaches that change both health system technology and health system teams can make a difference," says Boulware. "We hope to find that comprehensive care providing patients with the kinds of support they need can help patients better understand kidney disease and make better treatment decisions that are in line with their personal values."
PREPARE NOW is excited to join the many patients, families, health care providers, and public supporters to help fight kidney disease!