- What made you want to become an advocate?
For both of us, our social workers thought that we would be assets to the patients in our clinics and suggested we get involved in advocacy. Dawn has been an advocate for over 20 years and Stephanie for over ten years.
- How has kidney disease affected you and what has been your biggest challenge?
Stephanie: Kidney disease has affected every aspect of my life. Without warning, I was thrust into the ”chronically ill” world. I had to stop working because I was extremely tired. My income was drastically slashed and I had to figure out how to raise my family, put food on the table and put two kids through college on less than half my former salary. There have been many challenges over the years. Initially, it was taking medications regularly and changing eating habits. Foods that I was raised to believe were healthy were no longer allowed as well as restricting my fluid intake
Dawn: Kidney disease basically altered all of my plans for life. I was 23 with a 2-year-old daughter when I was diagnosed. I tried to remain working but everything went awry. I had to have a hysterectomy, I went from having a great government job to going on disability, and I separated from my husband…a disaster! The greatest challenge was and still is adhering to the dialysis schedule. I wanna do what I wanna do when I wanna do it!
- How has being an advocate helped you?
Stephanie: Being an advocate allows me to be comfortable in my own skin. The start of hemodialysis was a frightening experience. I had no prior knowledge of the procedure, no understanding of the machine, why alarms were going off, the role of various staff members, diet benefits, medications, etc. Being an advocate was the beginning of becoming a trained, informed professional patient. As an advocate I have had the opportunity for ongoing training about kidney disease. I participate in local and national committees, webinar panels, advocate on Capitol Hill and interact with policy makers, lending my voice to the cause and defining the quality and standard of my care.
Dawn: Being an advocate saved my life. At a time when I was just diagnosed I had no idea about kidney disease and how it worked. Like Stephanie I was lost. I had a disease with questions and no answers. Being an advocate opened up my world to learning about my disease so that I could better control it.
- What have you learned from being an advocate?
Stephanie: I have learned the importance of being an informed, compliant patient. I have learned how to navigate the system helping myself and others.
Dawn: I have learned from being an advocate that patients need us. Patients learn much better from other patients. I have learned the importance of being a leader among patients in my community. Not a role model, but a leader sharing my experiences and helping patients to gain better understanding and empowering them to make better choices.
- What is something you’ve learned about kidney disease and dialysis that you wish you knew a lot sooner?
Stephanie: I wish I knew the relationship between the causes for kidney disease and possible effects on the body.
Dawn: I wish that I knew that those headaches that I was having meant that I had high blood pressure and that they could possibly lead to kidney failure and dialysis.
- How would you like to stay connected to other advocates?
Stephanie: I would like to stay connected to other advocates through committee meetings, telephone, Facebook and in person educational events.
Dawn: I like our conference calls and I love our Facebook group but to me there’s nothing better than face to face meetings and educational events where you can put your hand on a patient’s shoulder and let them know that you understand what they’re going through and that it’s going to be OK.
- What are your best tips to get through the dialysis treatments?
Stephanie: My tips to get through dialysis treatment is to comply!! Comply with your care plan, your doctors and your nutritionist. Ask questions, get answers to your questions and learn as much as you can about kidney disease. We both agree that the most informative source of education was kidney school.
Dawn: My best tip to get you through dialysis is to do home treatment if it fits in with your life.
- What do you wish elected officials knew about dialysis patients?
Stephanie: I wish the elected officials could experience a day in the life of a dialysis patient--sitting in the chair, unable to move for four hours; traveling to and from the clinic 3 days a week, utilizing some mode of transportation; taking patient medications, etc.
Dawn: I wish elected officials knew that for the most part dialysis patients are impoverished, sick people who have for the most part spent many years working and contributing to society and need and deserve better quality of care and better conditions. We are intelligent people who know what we want and need and should be respected as such.
- Do you have any advice for newly diagnosed kidney patients?
Stephanie: Many people crash into dialysis and have no symptoms until it’s too late; generally their mental state is not clear because of the progression of the disease. I usually advise patients to wait a month after treatment begins, when their mental state clears up before making any major decisions. Especially when it comes to disease management.
Dawn: Once the dialysis fog wears off and you are thinking clearer, my advice is to enroll in kidney school and learn as much as you can about this disease. Learn about your treatment options and talk to your family and decide if home dialysis may be a better fit for you. Learn about the transplant process from beginning to the end including the side effects of the medications. Learn, learn, learn.
- What made you want to start a support group?
Dawn: Stephanie and I both agree that necessity was the reason for starting our support group. Lack of education for patients and support in our clinics forced us to seek answers and assistance outside of the clinic. We were exposed to and trained by knowledgeable individuals and that was an eye-opening opportunity. Our learning and partnership with each other has proven to be invaluable.
- What is necessary to keep a group successful and sustainable over time?
Stephanie: Seeking out and working with like-minded people who share the same goals and aspirations. Providing a service to people who are in need, being innovative and able to think on the fly are important qualities.
Dawn: Thinking of ways to educate and empower in non-conventional ways to gain interest and respect of those that we hope to empower can lead to great success and satisfaction.
- If other advocates want to start a support group, what should their first steps be?
Stephanie: The first steps before starting a support group would be to seek out like-minded people, people that you trust, people that you know have similar ideals and value system.
Dawn: Work ethics are important--you have to be able to trust others and know that the work is getting done. And you have to be sure to define your purpose and mission of your group. And never, ever give up.