What made you want to become an AKF Ambassador?
I wanted to be a voice for living kidney donors and people considering becoming a living donor. To encourage elected officials to support the Living Donor Protection Act that would protect living donors from the current barriers they face — losing their jobs, life insurance, benefits. The Living Donor Act would give them the protection to not lose any of these things and save one of the 97,000 people in the United States who are currently awaiting a kidney transplant.
How has being an Ambassador helped you?
Being an Ambassador has helped me become more aware of kidney disease and how it affects everyone differently. We all have our own story, but we also need to be aware and sympathetic to other people's situations and what they face everyday living with kidney disease. My story with kidney disease is a very happy one, and I realized when sitting around the room during our Advocacy Day training that my story was rare. I got tested, found out I was a perfect match to my Dad who needed a kidney, and two months later was wheeled into the surgery room to donate. Being an Ambassador has been eye-opening and has helped push me to advocate more for those who need it.
What have you learned from being an Ambassador?
I've learned that with organizations like the American Kidney Fund, we are making strides in the kidney disease world, but a lot more needs to be done. I've learned that as Ambassadors, we have to be the voices for the people who need help the most. The ones that are still waiting for their transplant to the ones who need help paying their bills because the monthly copay for dialysis is wiping their bank account out. I've learned that we need to educate people more on high blood pressure and diabetes and what happens when those diseases go left untreated and uncared for due to the lack of resources in certain communities.
Why should others become Ambassadors?
To advocate for themselves, other kidney patients, donors, and family members. To educate elected officials what it's like living with kidney disease, caring for a family member who suffers from kidney disease, or being a living donor.
How would you like to stay connected to other Ambassadors?
Of course through social media and email, but it would be great to start an annual Ambassador meet-up in a different city each year. A couple days for us all to connect, catch up, and advocate for kidney disease. You learn the most by talking to others in similar situations, and being Ambassadors definitely gives us the best chance at learning from and helping each other.
What do you wish elected officials knew about dialysis patients?
How much time patients have to sit hooked up to a machine in a center or at home and what that does to their personal and professional lives. How a lot of patients aren't able to work once they start dialysis and as a result of that can suffer financial hardship for themselves and their families. What a toll it takes on the patients, mentally and physically, every day.
Do you have any advice for newly diagnosed kidney patients?
Educate yourself as much as you can. Ask questions. Fight for your health and getting the proper health care. Take care of yoursel — eat right and exercise. Prevention is key to living longer and delaying dialysis or a transplant.
What are some interesting facts about yourself that you'd like to share?
I have one child who will be 8 years old next month! He is my little buddy and such a joy to be around. I have never drunk coffee. I drink tea every morning the old school way — from a teapot with boiling water and tea bags that don't have strings! I love to read and travel. I have no sense of direction! If I don't have my phone or landmarks, I can't get there. I just celebrated my second kidney anniversary with my Dad on November 16th. We are both doing great. :)
What would you like to tell someone who is considering becoming a living kidney donor?
It is one of the biggest decisions you will ever make, but also a selfless one. Most living donors are healthy and go on to live long, normal lives after donation. I just celebrated two years of being a living donor and feel great! If we had more living donors, think of the dent we could make in reducing the number of kidney patients who are waiting for a transplant.