What made you want to become an AKF Ambassador?
After becoming a living kidney donor for my wife, I still felt the need to give back. I felt it was my calling to advocate for others who have kidney disease and who are considering becoming a living donor. After going with my wife to many of her nephrologist appointments, I was in awe at the number of patients in the office. And then I learned how many people are on the waiting list for a kidney transplant (93,000).
I didn't know anything about kidney disease until I learned about my wife's condition. Looking back, I've learned so much in such a short amount of time, and after learning about the American Kidney Fund's (AKF) Ambassador program, I wanted to be an advocate for AKF. I want to continue to spread my wife's fighting story, along with my story as a donor.
How has being an Ambassador helped you?
It has helped me feel more empowered, as if I have a bigger voice. It has given me an opportunity to give back, connect with others, and talk about my wife's story and my story as a kidney donor. My hope is that I can help change the life of someone who is living with kidney disease or who is considering becoming a kidney donor.
What have you learned from being an Ambassador?
I feel that I continue to learn more about what is being done in partnership with our government every day. And while we still have a way to go, I definitely feel that if we continue to come together as Ambassadors and share our stories and experiences, we can and will continue to make a difference.
Why should others become Ambassadors?
There is no better way to give back! You have the opportunity to connect with others, and you may not realize that these conversations can help someone who is going through this tough time. You can help be that light at the end of the tunnel. When people feel like they are losing hope, you can be that person to hopefully keep the positivity going. You can help be part of someone's support system.
How would you like to stay connected to other Ambassadors?
Social media is, in my opinion, the best way! Many of us have social media, so we can use it to stay connected with other Ambassadors, set up Zoom calls or group events, and even create awareness through hashtags. Joining AKF's private Facebook group for Ambassadors has helped me feel like I have a second family to lean on. Sometimes you just need that support system as a patient or as a donor to help you stay positive.
What is something you've learned about kidney disease and dialysis that you wish you knew a lot sooner?
There is a huge living kidney donor support group on Facebook with more than 6,000 members from all over the world, and I didn't know about it until after I was approved to donate my kidney. I had so many questions that I was too embarrassed or shy to ask early on, but luckily I was able get my questions answered in the group right before I went in for the transplant surgery. I'm so thankful for that group because they helped put me at ease and provided so much encouragement. They helped me to know that I made the right decision to become a kidney donor. There were so many questions I had, but the amount of support and love everyone in the group gave me is something I'll never forget. I wish I had known about it sooner and donated my kidney as quickly as I could.
What do you wish elected officials knew about dialysis patients?
I wish many elected officials took the time to visit with dialysis patients — either in dialysis clinics, or just even by a phone call — to understand the stress (mentally, physically, spiritually and financially) they are put through with this disease. One never will know what it is truly like until it happens to you or a family member.
For me personally, I wish elected officials knew the amount of stress my wife and I went through. My wife didn't choose to have kidney disease, but unfortunately had to endure it. I wish there was more emphasis on kidney disease and dialysis in general.
Do you have any advice for newly diagnosed kidney patients?
Tell your story and broadcast it for others to see. When my wife's doctor told her that, I felt it was part of my mission to help make sure we did just that, not just to find a kidney donor but to also spread awareness of kidney disease and the impact it has on one's life. I wanted people to ask questions and I wanted to help refer them to the right resources.
Keep fighting for yourself and find a support system along the way. For me, it was always tough to set up my wife every night for peritoneal dialysis because I could see her grow tired and at times lose hope. I made it a point to tell her every day that we would get through it together and she will overcome kidney disease, it would not overcome her. And please, follow your doctor's orders!
You are not alone in this fight. Stay strong and keep fighting!
How does it help having a family member be part of the process?
Having a family member be part of the process was huge for us. Being my wife's kidney donor brought us closer and created an even stronger bond between us. It was also helpful to have family members help us out as our caretakers once we were both released from the hospital post-transplant. We will forever be grateful to the family members who took time off from work to help us get back on our feet.