AKF Ambassador Spotlight: Frances Ashe-Goins

What made you want to become involved with AKF?

My daughter has been on dialysis for 29 years and had failed transplants. It is important for me to share my experiences as a caregiver with other caregivers and people on dialysis so that they know that they are not alone.

How has being an ambassador helped you?

Being an ambassador has helped me with access to the latest information on renal disease, dialysis and transplantation so that I could share this information with others.

What have you learned from being an ambassador?

I have learned that there are many other people experiencing the same issues and working to make a difference.

Why should others become ambassador?

They could be that shining light in their community that helps others through crisis issues.

What is something you've learned about kidney disease and dialysis that you wish you'd known a lot sooner?

As a registered nurse I knew a lot about the medical aspects of chronic kidney disease. However, the emotional and mental toll is also very important in the lives of those living day to day with CKD and their family members.

How would you like to stay connected to other advocates?

It would be great to have networking informational conference calls with others, or another social media outlet. [Editor's note: AKF Ambassadors may join our closed Facebook Group.]

What are your best tips to get through the dialysis treatments?

I have learned from my daughter who started dialysis at age 17 that connecting with other patients in dialysis is important for emotional support and sharing how they cope with different situations.

What do you wish elected officials knew about dialysis patients?

I would like elected officials to know how pervasive CKD is in their communities and that policies, standards and legislation affect the lives of real people that vote in their elections. They should consider those people as they seek to make reasonable decisions about aspects of CKD.  

Do you have any advice for newly diagnosed kidney patients?

Hang in there and listen to your doctors and nurses, learn your medicines, learn about the dialysis process, be aware and ask questions until you understand the answers. You are not alone.

How does it help having a family member be part of the process?

My daughter tells me that dialysis is exhausting, and it is great to have an advocate to be strong for her and respond to the numerous medical questions and situations.

What do you wish other family members knew about kidney disease or knew about helping others?

I wish other family members would learn more about the dialysis process, options for transplants and the emotional toll that patients go through.

What are some interesting facts about yourself that you'd like to share?

As a mom, RN, educator and policy maker, I never imagined that I would be strong enough to handle my job responsibilities, my family responsibilities and my caregiving responsibilities when my daughter was first diagnosed with CKD. However, with God-given strength, faith and wonderful family and friends, this 29-year journey continues.