My career in dialysis began when I “crashed” into renal failure in December 1974, at the age of 22 years, and I have elected to continue to dialyze 3 times a week in-clinic ever since. It was not until my involvement with Dialysis Patient Citizens that I began to understand and be personally committed to advocacy and the sharing of information about Medicare and kidney health-directed legislation. Watching our organization grow and continue to evolve has educated me and been a most positive experience. The DPC Patient Ambassador Program has helped me connect with numerous kidney citizens across the country, as well as my home state of Iowa. Regardless of what options for renal therapy that an individual may choose to utilize, it is important to remember the payment chain and how much our lives are dependent on adequate federal dollars to maintain optimal and accessible care. Dialysis Patient Citizens is truly committed to further building a healthy, educated, and empowered kidney citizen organization that represents all of the dialysis and CKD community.
I was born with only one functioning kidney, as well as a host of other issues. When I was born, doctors told my parents there was no way I would live more than a day. When I made it two days, they were told that I would not live more than a week – wrong again! Then they were told that yes, I may live but I would need to be placed in a state facility. Fortunately my parents did not agree to this either. For many years, I had been told that I would need to start dialysis. Thankfully, through careful attention from much more qualified doctors and the grace of God, I made it until I was 25-years-old before I had to start dialysis. That was 10 years ago. During my time on dialysis, I went back to college and earned a Bachelor’s of Science in Political Science from Athens State University in Athens, Alabama. I am not eligible for a transplant so I am very interested in new technology including the possibility of a wearable kidney, or even stem cell research.
I am honored to have been elected to the DPC Board of Directors. I also have the honor of serving as the patient representative at my local clinic. Being involved is the only way to see the changes we need as patients to live fulfilled lives. Together I believe we can achieve great things for the needs of ESRD patients and their families.
I have been on and off of dialysis since I was 12 years old and diagnosed with kidney failure as a result of a bicycle accident. I was lucky enough to receive a transplant from my mother which lasted for seven years until my body rejected it in 2000. I was temporarily put on hemodialysis but now undergo peritoneal dialysis three times a week for 10 hours while I sleep.
I am thankful for dialysis because it has provided me with the gift of life. I am honored to have been given the opportunity to become part of a larger community of empowered patients, like DPC’s Board of Directors, who are continually working to improve the lives of patients just like ourselves.
During the period of time when I was on hemodialysis, I discovered my passion for really getting to know my fellow dialysis patients and helping them remain positive and optimistic. I began visiting my dialysis facility on my days off from treatment to visit with patients and help raise their spirits, and was even asked by facility staff members to speak at various banquets for other people who were also suffering from kidney failure. I have traveled from my hometown of Selma, CA to Washington, D.C. several times to lobby for important legislation for my kidney community.
I am currently on the waiting list for another transplant, but I feel that being on dialysis has made me stronger and has given me a completely different outlook on life, even inspiring me to go to college to become a medical interpreter for Spanish speaking people who may have language barriers in accessing their health care.
I feel honored to be included among the DPC Board of Directors. Three years ago, this is not something I would have ever anticipated. I went on vacation in the Spring of 2008 thinking I had the flu and ended up hospitalized with kidney failure. Since then I have been an in-center hemodialysis patient, while working towards a kidney transplant (which has been an interesting journey in itself), and continuing to work full-time as a Business Continuity manager in the Kansas City, Missouri, area. As a result of my professional background, I am always interested in emergency preparedness as it relates to dialysis patients and others with special medical needs.
Two things that have been key to my success on this journey are becoming educated about my situation and the strong support team I have developed, both among the dialysis clinic staff, other medical providers, family and co-workers. I have found that any issues generally lie within the systems, not the people, and wish that everyone could get the quality of treatment I have received.
In particular, I have been motivated by one of my late co-workers, who in spite of suffering through several serious medical situations in her life, never let those challenges get the better of her. She encouraged me to take control of the situation as best I could, and to not let the challenges get me down. I hope to bring that attitude to my time on the DPC Board of Directors.
I grew up in the South Jamaica section of Queens, NY and was raised in a household and community that taught family first and service to others. This is the mindset with which I have pursued life. After getting my start as a nurses’ aide, I eventually advanced to EKG technician, and later to supervisor of the EKG department. I finally retired after 37 years of service. During the course of my career, I served on various committees to improve employee relations, educate employees and unite the hospital and community, and I was recognized for the New York City Health and Hospital Corporation’s achievement award for bringing diversity to the work force, among other awards.
I have committed much of my life to being a parent to my two wonderful children and to being actively involved in the local community, and I have taken pride in those roles. So when I suffered a stroke in 2004, my life in those roles was threatened. It was only months later that I lost vision in both eyes, and in 2005, I was diagnosed with acute renal failure. This was hard news for my children because they lost their father to renal failure in 1981.
Although traumatic, I never had the chance to lose hope. My children stepped in with the unwavering determination, resiliency and faith they were raised to have. Surrounded by this love and support, I made it through those tough times and came out ready to make an impact on anyone I could help.
I continue to serve as a pillar in my church, serving as a senior usher and intercessor. I recently developed Single Mothers in Christ, a spiritually-based empowerment and mentoring program for single mothers of the church. Now, I welcome the opportunity to serve as a DPC Board Member, in hopes of providing preventive education to the world, serving as a voice of hope for survivors of renal failure and as a voice of consciousness to elected officials and health care providers.
My parents found out that I had a congenital kidney problem when I was 2 years old. I had my first surgery when I was just 2.5 years old & have had many "medical adventures" (as I like to call them) since then. I have been on dialysis now over half my life (about 20 years) in between having 4 kidney transplants (my longest one lasting almost 8 years). I have tried pretty much every modality of dialysis on pretty much every machine. Witnessing many of the aspects of the field first hand, I can tell you that it’s been a long, difficult journey in which I've met lots of amazing, caring, wonderful people. Growing up with kidney disease has given me a very unique perspective & has forced me to figure out how to juggle my medical issues with the rest of life and all its other milestones.
I joined DPC as a Patient Ambassador back in 2009 hoping to help & educate fellow patients and their families as well as advocate to our representatives about kidney disease and it's an honor to be serving as a member of the Board of Directors of such a forward-thinking organization. A few years ago I started my own website (KidneyLiving.com) in the hopes that my experiences and the things I've learned can help others and maybe in some way make their journey a little easier. For the last few years, I have also have done some fundraising for the NKF of Greater NY through their annual Kidney Walk.
I am currently on home hemodialysis while waiting to get another transplant. I have always felt that staying informed about your disease is key to making the treatment work. So if I could leave you with one thing, I would like to say: “The only person with you (the patient) all the time, is you (the patient), so the more involved you are in your care, the better the outcome!”
I am from Newark, Delaware and am a registered nurse, an ordained minister, and I was an in-center hemodialysis patient since my kidney disease diagnosis in 2004 until I received a kidney transplant in the spring of 2012. I have been involved with DPC as a Patient Ambassador, Secretary of the Board, Vice President of the Board, and I currently serve as the President of the Board of Directors for DPC Education Center.
Beyond my DPC involvement, I serve as a patient representative of Advisory Board at ESRD Network 4 and a Chairperson at Henrietta Johnson Medical Center for Clinical Evaluation Committee. I established a support group to encourage better communication between clinic staff and patients, and have traveled to Washington, D.C., to meet with lawmakers. Before joining the Board in 2007 I was honored to receive the DPC Hero Award.
I have been a Dialysis patient since August 2014 as a result of acquiring polymyositis an auto-immune disease in September 2012. Polymyositis affects the major muscle groups in the body and is treated with various steroids, primarily prednisone. This debilitating disease left me unable to talk, walk or swallow for 4 months. I literally had to relearn basic everyday body functions, standing, walking and talking all over again. After months of Physical, Occupational and Speech Therapy I slowly begin to regain some since of normalcy in my life. Then in February 2013, I was informed that my kidneys were failing. In a matter of 6 months I had gone from regularly participating in athletic events and running 5 an 10K marathons to becoming completely sedentary.
Through it all I never lost my desire to be an active participant in life. I take my “new lifestyle” very seriously and am now on Peritoneal Dialysis. While as an in-center patient I read everything I could on managing my new lifestyle and attended many workshops and seminars on nutrition and managing lab results. I frequently shared this new information with other dialysis patients who were struggling with managing some aspect of their care. Eventually I was able returned to work as Senior Level Operations Manager in the Washington, DC area.
I am excited to be a member of Dialysis Patient Citizens Board because it allows me advocate for dialysis patients across the country and to speak for those who cannot. I intend to provide a physical presence among legislatures and others committed to assisting Dialysis patients everywhere.
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