1. What made you want to become an advocate?
I became an advocate when politicians who obviously did not understand chronic kidney disease attempted to pass into law a bill that would negatively effect ESRD patients like me. That one experience, of speaking about the multiple impacts ESRD has had on my life, brought into focus for me how little public dialogue there is about Kidney Disease. There is public information on television available on how to treat everything from back pain to migraines, from athlete’s foot to irritable bowel syndrome, but very little, if any, publicity about kidney disease. You can live with athlete’s foot, but you can’t live without your kidneys. I hope to help spread information so the general public can learn to protect their kidneys before they become ill.
2. How has kidney disease affected you and what has been your biggest challenge?
My biggest challenge is transportation. I have ESRD and require dialysis treatment 3 times a week, and the nearest clinic is 25 miles away. I live on a very limited income and driving over 150 miles a week is expensive. My car is very old and unreliable, and when it breaks, I do not know what I will do to obtain transport for my treatments. This will be an interesting challenge, to say the least, in a long line of challenges that ESRD has presented me.
The first challenge was understanding that ESRD did not mean I was going to die right away. But it did mean I had to radically change my gypsy lifestyle to a regular regimen of diet, exercise and rest to compliment dialysis treatments.
3. How has being an advocate helped you?
I have been an advocate in the past for the un-housed, started and ran a homeless shelter for several years, worked in Native American communities to improve housing stock, and administered other non-profit organizations that benefited low-income citizens. Suddenly, I found myself feeling sick and powerless in the face of what I saw as a dire diagnosis. An “End Stage” diagnosis. Being an advocate has helped me reclaim some of my self-worth and helped me focus on life and change rather than death.
4. What have you learned from being an advocate?
No one hears you if you don’t speak up!!!
5. Why should others become advocates?
No one will listen unless many of us speak up!!! As is obvious in the current political climate, those who make the most noise get the most attention.
6. What is something you’ve learned about kidney disease and dialysis that you wish you knew a lot sooner?
A kidney friendly diet. I have known several people recently who have halted their progression towards ESRD with strict adherence to diet.
7. How would you like to stay connected to other advocates?
First, regional meetings. There is no amount of electronic communication that can replace human contact. Second, I would really like to be in email contact with other advocates.
8. What are your best tips to get through the dialysis treatments?
Make the staff see you as an individual, not just as a patient. Take candy, cookies, anything you can think of as gifts for the entire staff; don’t forget anyone. Go in with a smile even if it is forced and speak to as many people as you can in the facility, both staff and patients. Make yourself known as a friendly, noncritical person. If there are issues that warrant bringing up to the staff for resolution, be sure to have the resolution in mind and take the issue to the appropriate staff member.
Make yourself as comfortable as possible during treatment and reward yourself with some token, however small, after treatment.
9. What do you wish elected officials knew about dialysis patients?
Not everyone gets a kidney transplant; dialysis can be painful and can last years, and DIALYSIS IS INCREDIBLY EXPENSIVE!!! Finding a more cost-effective method would be worth investing public monies.
10. Do you have any advice for newly diagnosed kidney patients?
Find a great nutritionist and great doctor who believes in what the nutritionist will advise, and exercise, exercise, exercise. Keeping your body in the best condition possible will help overcome a lot of the negatives of dialysis. Be good to yourself and stay active.