AKF Ambassador Spotlight: Terri Thede

What made you want to become an Ambassador?

I became a living kidney donor in August 2017 and was looking for ways to share more information about that opportunity.

How has being an Ambassador helped you?

Being an AKF Ambassador has allowed me the opportunity to work on important things that would improve the lives of kidney patients, including being part of the effort that led to the Living Donor Protection Act becoming law in Illinois. I feel like I wouldn't have even known about that bill or that there were opportunities to get involved without being an Ambassador.

What have you learned from being an Ambassador?

I have learned more about the urgent need for kidney donors, how important it is for people to become registered organ donors and the need to provide potential donors with information about kidney disease and dialysis. Before I was a donor, I had no idea how brutal dialysis is on the human body. Because of the information I received from AKF at one of their advocacy days, I am now able to eloquently share what I have learned about kidney disease.

Why should others become Ambassadors?

It broadens your perspective on the need for more kidney transplants and the organ donors who make those lifesaving transplants possible. You gain a lot of information from AKF, and you have the opportunity to meet with legislators, talk to potential donors and just really understand the nature of what living organ donation entails.

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

How hard dialysis is on the body — what the ports, lines and fistulas do to patients' arms, the side effects they experience if they miss even just one dialysis appointment and how something as simple as drinking too much water can seriously harm their health.

How would you like to stay connected to other Ambassadors?

I appreciate the private Facebook group for Ambassadors. That's the easiest, most efficient way to share information.

What do you wish elected officials knew about dialysis patients?

I wish they completely understood how hard every day is for dialysis patients. Dialysis limits their mobility, it affects quality of life and more. I considered myself fairly well-educated before I became an Ambassador, but I had no idea how much I truly did not know.

Do you have any advice for newly diagnosed kidney patients?

Start advocating early for a living donor. Some people stay on dialysis for years waiting for their spot to come up on the kidney transplant waiting list because they are reluctant about asking someone to donate their kidney to them. If I had to go on dialysis, I would immediately start looking for a living donor who would donate their kidney to me or on my behalf as part of a paired kidney exchange.

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

My family was very supportive of my decision to donate my kidney, but I know that's not the same for everyone. Out of the 100 voices that supported me there was only one that really questioned my decision. Maybe everyone else kept quiet, but I think sharing the knowledge I had about kidney transplants with them helped give me that base of support for what I did.

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

I've been managing a food pantry that caters to our local university for the last one and a half years. I love to travel and bake. I have three grown children and our daughter has three children of her own. We adopted our youngest child from Albania and had planned a trip to Albania for later this year before the COVID-19 pandemic. We're hoping we can still go!