1. What made you want to become an advocate?
As a registered nurse, my first responsibility is to advocate for patients and their families. Helping others and giving back has always been a part of DNA.
When I went back on dialysis in 2014, I lost my job and the COBRA payments were over $1000 a month.
2. How has kidney disease affected you and what has been your biggest challenge?
I first had kidney failure in 1995 and received a kidney/pancreas transplant in 1996. While dialysis was tough, I had a lot of support, I was much younger, and I bounced back fairly quickly.
Things got tougher when my transplanted kidney failed in 2014. I was older with more medical issues and my only option was to receive in-center hemodialysis. The dialysis was much harder on me this time causing many more physical problems in a very short time. I lost my job and I was too sick to go out with friends, so the dialysis was physically, financially, and socially devastating for me. My biggest challenge after receiving a new kidney in 2015 was a strange and unexpected vision loss due to the low blood pressure brought on by the hemodialysis. As a result, finding a job has been a huge challenge, especially since I am unable to drive. Despite it all, I’m adjusting to my new normal and I do feel that new opportunities are on the horizon.
3. How has being an advocate helped you?
While I have never been shy about speaking up, being an advocate for the AKF has helped me focus on what’s important to communicate to elected officials, patients, and the community. It has taught me to not sit on the sidelines - to instead take action in whatever way is needed to help fellow kidney patients. To be honest, it helps me feel good about myself and I feel like I am really accomplishing things with my advocacy.
4. What have you learned from being an advocate?
I have learned so much about how to communicate effectively with people. I now feel comfortable calling, emailing, or writing letters to legislators because I feel like I know how to get my message across thanks to the AKF advocate training. I’ve learned how legislation works and how to reach out to my legislators without being shy about it. The AKF training taught me how to state my message and keep it on track. And the training is super useful in learning how to understand each piece of legislation and what it means to the constituents of that legislator and kidney patients.
5. Why should others become advocates?
If nothing else, it’s a way of giving back. And advocates become much more involved in their own care and received a great deal of knowledge about their own disease. I think it opens up a whole new world of information, education, and motivation to help others as well as themselves.
6. What is something you’ve learned about kidney disease and dialysis that you wish you knew a lot sooner?
Well, the only education I received about dialysis other than what I knew was a nurse, was the first day during orientation at the unit. I just got out of the hospital and I was very ill. And the one thing I wish I had known believe it or not – was to bring a couple of blankets for my first treatment! It was 60° in the unit and that first treatment was miserable. The other thing I wish I had known about of course was what dialysis could potentially do to your vision. As a nurse, I already knew that one must take care of their heart. I honestly didn’t feel like there was much education about that for the patients and believe there should be more of that.
7. How would you like to stay connected to other advocates?
I enjoy the Facebook group, phone meetings, and of course messaging/email is great. It would be great to have a roster of all of you with your preferred contact info and location, if everyone was agreeable. That way those of us who live close together could keep in touch and help each other with advocacy issues.
8. What are your best tips to get through the dialysis treatments?
1. Bring a blanket! Bring your favorite pillow, a book or headphones and your cell phone. All these things help me to pass the time. I also would text my sister to keep me distracted. We always like to play Words with Friends and other games with each other. You could even do that with other dialysis patients in the unit if they have Wi-Fi and if you have a smart phone!
2. Educate yourself on your disease, the treatment, transplant care if that’s in your future, things you can do to prevent the complications of dialysis and kidney failure, etc. Do not depend on the dialysis unit to do this. Learn how to use the Internet and avail yourself of the information that is there from reputable sites. I cannot tell you how much I scanned the Internet to learn all I could learn about the diet, insurance issues, minimizing side effects, etc. I truly believe the only way you can advocate for yourself is to learn all you can learn about kidney disease and dialysis. The more you (or your caregivers) know, the better off you will be.
9. What do you wish elected officials knew about dialysis patients?
Most laypeople, including legislators and even some medical professionals don’t realize that dialysis is not a 100% replacement for a normal kidney. It doesn’t even come close.
I also wish they knew just how physically, financially, and socially devastating this disease can be. I wish they knew how much it affects everyone around them. It affects the economy. I wish they would all visit at dialysis unit and talk to the patients directly.
10. Do you have any advice for newly diagnosed kidney patients?
Pretty much what I said in number eight.
Ask questions! Always write down a list of questions – no question is stupid! You can ask your doctor or dialysis staff questions you have regarding your treatment, diet, insurance, whatever is on your mind. Never be afraid to ask questions!
It’s unfortunate that most of the education the patients get at dialysis are done on the first day when they feel so poorly. At least that’s how it was for me. Other dialysis centers may be very proactive with education so please take advantage of that if they offer it. I believe many patients feel alone because the family doesn’t understand why they feel so bad.
Talking to other patients in your situation is helpful and some of the groups on Facebook are very supportive. But be careful not to compare yourself to any other patient in terms of their medical status or their treatment. Everyone is different and it’s important to keep that in mind. Also, asking for advice on the Internet or a social media group is really not advised. I’ve seen that happen - everybody gives “advice” that may be totally against what your doctor wants for you and may be outright dangerous. As mentioned above always have questions for your doctor and staff.