Della Major

1.    What made you want to become an ambassador?

I was asked by my dietician to write an article for the Renal Network outreach magazine.  I believe that a well-informed patient is a healthy patient.  Through my research for the article, I found that a lot of the information was not shared to patients or their family members.  I wanted to give patients a voice within the renal community.  I am an educator.  My passion for research and sharing information was the motivation I used to keep the patient voice up front and center.

2.    How has being an ambassador helped you?

As an ambassador, I have been able to gain access to information that is not openly shared within the renal community.  Being informed about new innovations has helped me to create the best new normal for my life.  As an ambassador, I have made valuable friendship and connections with other renal patients who are experiencing the same issues.  I found out that I am not alone and there are other individuals who can relate to my renal experiences.  I am not an Island and I have gained team that I can now call to help me through.

3.    What have you learned from being an ambassador?

I have learned that my voice matters.  As an ambassador, I can represent those who cannot represent themselves.  I feel empowered by the trust that my peers have in me to speak on behalf of them.  Also, becoming an ambassador suggests that I am an expert in my field, and I have the knowledge and the necessary skillset to complete the task.

4.    Why should others become ambassador?

I believe that renal patients need to be proactive with their care.  Being an ambassador, give you a since of purpose.  When you are speaking on behalf of others, you are more compliant with your own care.  Why, because you become engaged and informed allowing you to effectively communicate with your renal team and family members.

5.    What is something you’ve learned about kidney disease and dialysis that you wish you knew a lot sooner?

I wish that I would have known about different treatment modality.  I learned about home dialysis care following 2 years of in-center dialysis treatments.

6.    How would you like to stay connected to other advocates?

Currently, I connect to other advocate via email, social media and network meetings in state and out of state.  This year, I plan create a blog where other advocates can share and connect.

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

Tip 1:  You must change your mindset.  Dialysis saves lives!  You must realize that without dialysis your outcome will be totally different. 
Tip 2:  Bring items that would make you comfortable and re direct your focus from the dialysis process. (ex:  I watch a video, play my music, work on puzzles, etc.)
Tip 3:  Conversation with your pod chair buddy.

8.    What do you wish elected officials knew about dialysis patients?

I wish elected officials were more informed about kidney disease and understand the life of a dialysis patient and their families. A lot of policies are established without consulting dialysis patients whom those policies will affect.

9.    Do you have any advice for newly diagnosed kidney patients?

As a newly diagnosed kidney patient it is important that you become engaged in your care.  It is important to ask your renal team questions.  When you are compliant with your care, you experience less complications during your treatment.  Second, I will advise them to learn whatever they can about Kidney Disease and how it specifically affects their current situation.

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

Dialysis affects every aspect of your life including your family members.  Family support is the best support a dialysis patient can received.  Family members involvement creates an atmosphere of unity within the family.  Everybody is involved and there is a greater buy in from each member.

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

I wish that they knew living with Kidney Disease is not easy.  I want them to learn from my mistakes and begin to make the necessary changes for themselves.  Second, I want them to know that Kidney disease is not hereditary. 

12.    What did you like best about advocating as part of the fly-in?

What an awesome opportunity to participate in this year fly-in.  I enjoyed the all-day training which included a mock training session with our advocacy partners.  In addition, we had the opportunity to network with other members and AKF staff.  I felt well prepared to communicate with my constituents of Capitol Hill.  Finally, I really enjoyed the special cherry blossom tour.  That was an opportunity to share one on one with other ambassadors during the tour.

13.    How was advocating on the state level different than at the federal level?

Advocating on the state level represents only that state.  Advocating on the federal level represents the nation.  I had the opportunity to widen my scope of advocating whereas the legislation we were advocating about obtain a greater level of support.  Not just local support, but federal support.