Ambassador spotlight: Nikki Grotenhuis

What made you want to become an AKF Ambassador?

I fell into kidney donation through my work at a local radio station in Indianapolis. We were going to interview a friend of the show who was in need of a kidney. Doing research before the interview sparked my interest in donation. Once I realized how small of a sacrifice it was to be able to give the gift of life, I decided to try to donate to him. I was not a match for him but through my research of what was needed of a donor, I knew I was meant to donate. I donated my kidney to a stranger in February 2020. I hope one day to be able to meet my recipient, but knowing that she was 17 at the time of donation and is doing so well now meant the world to me. After donating my kidney, I realized that I felt like I hadn't done enough. The process of donation was wonderful and the healing went fairly quickly, so once I felt back to 100% I was able to do more. I found the American Kidney Fund (AKF) and they have been so wonderful to include me in the group of Ambassadors.

How has being an Ambassador helped you?

I haven't been an Ambassador for long but in this short amount of time I have felt so welcomed by AKF and they have put me right to work, which feels so cool. I know my story isn't the same as other Ambassadors living with kidney disease themselves, or who have had close family or friends with kidney disease, but I am grateful to be included. It made me feel useful and like my life post-donation could continue to be used to bring awareness to kidney issues.

What have you learned from being an Ambassador?

I am quickly realizing how well-oiled the AKF machine is and how talented they are at taking our individual stories and using them to spread the word in the best possible way. I have already learned a lot about kidney disease policies and working with lawmakers to bring about the most positive change for the community. I have also learned that I have a lot to learn, but in a great way. This community is vast, and people have suffered for so long, which means I have a lot of growing to do to become even more useful to the cause.

Why should others become Ambassadors?

Kidney disease is so widespread and every one of us that uses our voices to bring more attention to it means it is an issue that continues be noticed. So many people have connections to kidney disease and still don't really realize how serious it is. Until I entered the kidney community myself, I really didn't understand it. Now I see kidney issues all over my world — they were always there but I didn't notice. Being an Ambassador means we get to keep bringing kidney disease to light, so others may want to join the fight with us.

How would you like to stay connected to other Ambassadors?

Social media works wonders for staying connected! I like keeping tabs on what other Ambassadors are up to in their own communities so I can get ideas of ways to help in mine!

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

How many people forgo transplants for fear of being able to afford their immunosuppressive medications. That broke my heart. The idea of that a full life without dialysis is within reach, but insurance coverage might mean you can't sustain that life, is not OK.

What do you wish elected officials knew about dialysis patients?

What an underserved community they are. We give a lot of attention to many diseases, but kidneys can easily fade into the background. There are also high rates of kidney disease and its two leading causes — diabetes and high blood pressure — in communities of color that have never been afforded the same care as predominantly white communities, and we need to address those health disparities. They have been underserved for a long time and as they continue to age the help they need grows.

Do you have any advice for newly diagnosed kidney patients?

Reach out to the kidney community. You have so many people going through the same thing and it's an amazing group of people. They want to help so badly and give advice that they wish had been given to them. Even joining AKF's Advocacy Network, I felt such a great connection with others who wanted to help me along the path to be the most useful. You have a support system, so use it whenever necessary.

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

Working radio for 15 years has been an incredible experience with a lot of fun moments. I'm a big fan of dogs (especially mine — my 9-year-old adopted mutt, Marbles) so my goal is to pet as many as possible.  Outside of that, I spend almost two months decorating my house for Halloween so I suppose I've spent way too much money on detached body parts and plastic skeletons!