Della, Patient Advocate:
I was diagnosed with incurable kidney disease when I was 19 years old. As the disease progressed, I began hemodialysis in 1985. At that time, almost all of my dialysis technicians were RNs. I received my first kidney transplant in 1987. Currently, I am on transplant number three. As time passed, I began to notice how hemodialysis clinics had changed from professional, knowledgeable staff with medical backgrounds and/or experience to "get 'em in, get 'em out" facilities with technicians who had little and often no medical experience at all. Before my last transplant, I became overwhelmingly disgusted with how I was being treated as a patient. It was a fight to be able to get copies of my lab results and get my questions and concerns acknowledged. It was infuriating watching other patients being treated with lip service and having to live as the victims of avoidable medical mistakes, and being "cared for" by technicians who had only two weeks of training and no previous experience. One day, a fellow patient showed me a less than favorable letter to the editor about dialysis and dialysis clinics. To make a long story short, the author of the letter and I ended up working to help pass HB 1131 (Colorado) to require certification for hemodialysis technicians in 2007. I believe in what Dialysis Ethics stands for. It was encouraging to find out that it wasn't "just me" struggling to be treated fairly, and that I wasn't the only one that these things were happening to. Since my last transplant, I am still very much aware of and concerned for the safety and well-being of dialysis patients. My 11 1/2 years hooked up to a dialysis machine as well as the emotional and physical toll it has left on me will not soon be forgotten. It is my sincere desire to continue advocating for patients and stand behind them to achieve the best results possible from dialysis.
Involved RN, Nephrology Nurse:
I became a registered nurse in 1983 and worked as a labor and delivery nurse until 1994. At that time, I became a dialysis nurse and worked in the capacity of a staff nurse, charge nurse, staff educator and home patient dialysis coordinator. In 2002, I became a certified nephrology nurse and retired from nursing in 2007.
I was involved in the end process of helping pass HB1131 (Colorado) requiring certification of hemodialysis technicians in 2007. I am glad to be involved with Dialysis Ethics and provide dialysis education, information, and advocation for dialysis patients and their families.
Larry Hall, Patient Advocate:
My name is Larry Hall and I have been on Dialysis since June 1998 here in Wilmington N C. Some time in the early 2000’s Davita Dialysis took over and a change started to take place. They started to hire technicians with no previous experience and gave fast training, and that’s when I noticed medical mistakes were being made on me . It seemed like we, the patients, were on an assembly line meant to get us ON and OFF as fast as possible. So when medical mistakes were made on me, I filed a grievance. They would try to change things around and cover it up; then I experienced harassment on my treatment days by Davita Management.
I received a letter from Davita Dialysis on November 14, 2007 informing me on November 15, 2007 I would no longer receive dialysis treatment at any of DaVita's local or surrounding facilities. I had to get my treatment at my local hospital by going through the ER and then sometimes I was turned away from the ER by ER doctors. When I called the North Carolina Department of Health and Human Services and the Southeastern Kidney Council Inc. to investigate they gave me the run around for months. Then I contacted DialysisEthics. Without their HELP and the HELP of God I really believe I would not be alive today. DialysisEthics would fight for me on a daily basis and they always told me not to give up because I had not done anything wrong, but only tried to live and receive fair treatment. After DialysisEthics had CMS come in and investigate, Davita Dialysis in Wilmington was cited for involuntarily discharging me from their facility without an advance notice of discharge. This would not have happened if DialysisEthics.Org wasn't looking out for me. So now I feel I can advocate and help work with the organization that saved me - and help other patients who may be having problems and are not being treated fairly. I’m still today getting treatment three times a day at my local hospital and I'm willing to stand behind Dialysis Patients to get the best Dialysis treatment.
Chris Schwab Coordinator:
I'm the father of a daughter with kidney disease (transplant now). I first became aware of the issues in this field of medicine when I visited the DialysisEthics site back in the year 2000 and met many of the people with the organization. I was made aware there were problems that needed to be addressed: problems that were backed up by a lot of facts, statistics, articles by some distinguished people, and stories from people that seemed to have many of the same themes. I felt a moral obligation to join DialysisEthics, an organization that has always put those receiving treatment for kidney disease first.
I should mention I'm proud of the work DialysisEthics has done and my part in it. DEO inspired me to become one of the movers for Colorado state bill HB1131, a bill for the certification of hemodialysis technicians that passed the state legislature in 2007.
I look forward to continuing the tradition DialysisEthics has always had in the area of Patient Advocacy and will look to improving conditions whether it is through advocacy, legal, or legislative ways.
Arlene Mullin-Lane, one of the original founders of DialysisEthics, advises staff as a private citizen. Top-notch lawyers, who have been involved with the organization for years, offer pro-bono advice. However this organization is NOT a lawyer referral service.