What made you want to become an AKF Ambassador?
I became an American Kidney Fund (AKF) Ambassador to help raise awareness of kidney disease, particularly polycystic kidney disease (PKD), which I personally have suffered from most of my adult life. By sharing my story, mentoring, coaching and educating others, especially local and state legislators, I have the opportunity encourage others who may be traveling the same exact road of deteriorating health and kidney failure as I traveled. It also gives me the ability to assist others on their road to mending.
How has being an Ambassador helped you?
Being an Ambassador has helped me by giving me the tools to fight kidney disease. With kidney health facts, kidney disease prevention tips and the awareness of laws that impact kidney patients and their caregivers, we can come closer to making AKF's vision of "a world without kidney disease" a reality.
What did you learn from being an Ambassador?
By becoming an Ambassador, I am now equipped with the proper ways to address my local and state legislators. I have also become an AKF Kidney Health Coach — AKF's free course that trains you how to educate your community about kidney disease — and have learned about AKF's innovative measures to assist the public by way of kidney disease education and prevention initiatives.
Why should others become Ambassadors?
To join the fight against kidney disease and to educate our communities, state and local leaders, and other kidney patients and caregivers about prevention of kidney disease, dialysis and transplantation.
How would you like to stay connected to other Ambassadors?
I enjoy the monthly Ambassador Zoom calls! I hope there is even more time added onto those calls during which we can talk to each other about issues, obstacles, challenges and methods to support and resolve challenges.
What is something you've learned about kidney disease and dialysis that you wish you knew a lot sooner?
Maintaining as close to a normal blood pressure as possible and eating less sodium (salt) are pointers that I wish I was aware of when I was much younger.
What do you wish elected officials knew about dialysis patients?
I wish elected officials were aware that dialysis patients are exhausted from the life-sustaining treatments they must attend multiple times each week, and that being on dialysis changes patients' lives forever — being able to get out of bed to go to work, gaining meaningful employment and simply being able to function and live a normal life are all a challenge. Also, access to mental health professionals and counseling for dialysis patients should be readily available.
Do you have any advice for newly diagnosed kidney patients?
My advice for new kidney patients is to:
- Educate yourself on the five stages of kidney disease and the symptoms.
- Eat kidney-friendly foods, reduce the amount of sodium in your food and drinks, pay attention to the nutrition labels at grocery stores and prepare home cooked meals when possible. AKF's Kidney Kitchen® has more than 500 kidney-friendly recipes that aide in maintaining a healthy kidney lifestyle.
- Inform your close friends and family about your diagnosis of kidney disease or kidney failure and let them know how they can help you. Even just having someone there to provide emotional support is important.
- Visit AKF's website and take advantage of the downloadable materials, the educational videos and personal survival stories.
How does it help having a family member be part of the process ?
Having the support of family is a key factor in the road to success throughout your kidney disease journey, especially through kidney failure and even transplantation. Family members offer encouragement and may uplift you when you are not feeling your best. Just a hug, a smile and even a brief conversation or pep talk can give you the mental and emotional push to make your way through one more obstacle or challenge. Knowing that you are not alone makes fighting kidney disease worthwhile.
What are some interesting facts about yourself that you'd like to share?
My battle with PKD forced me to uproot my life and move hundreds of miles away from my hometown. I started life all over again, lost my health insurance, got kidney cancer and in the end received a successful kidney transplant. I have also continued my lifetime journey of searching for hope when all else has been lost. Eventually, I found my way with the help of dialysis, the removal of both my kidneys (called a bilateral nephrectomy), support from my community, my faith and a transplant. Today I thrive by sharing my story — mentoring, coaching and revealing the formula of success that I have found — to others who are finding their way to the same healing. Today, with the help of AKF, I am assisting others on the road to becoming a "walking miracle," as I have been called in my story of survival.