Please share your experience of winning the 2019 Hero of Hope Award.
The 2019 Hope Affair was a really fantastic and special event, this year in particular for me as pediatrician, because so much of the program focused on children impacted by kidney disease. Children were focused prominently and recognized throughout the program, from the 2020 AKF calendar artist Emme Oberbreckling to the campers from Camp All-Stars to the 2nd grade students who helped to raise money for AKF. It was such an amazing experience and honor to be recognized with the 2019 Hero of Hope Award, made all the more impactful for me by being able to share the it with my loved ones. I was fortunate that several friends who have known me through the ups and downs of my journey with kidney disease and my family, including my parents, were able to attend. The honor was extra special for me as my father, who was my living donor, was able to introduce me at the ceremony, and the event was actually on my mother's birthday. The outpouring of support from people touched by my story, both at the event and now even afterwards when I meet people who had attended the event, has been incredibly humbling and moving.
What made you want to become an ambassador?
Since before my first transplant back in 2006, I've been involved with volunteer work and advocating for both myself and my fellow patients in my local community. For me, it was important to use my knowledge, my experience, and my voice as a patient and medical professional to bring attention to the struggles of those with kidney disease, to raise awareness, and to educate others. When the opportunity to be an Ambassador for AKF came up, I was excited for the opportunity to learn more about legislative advocacy and how I could use my perspective and experiences to impact policy.
How has being an AKF Ambassador helped you?
They best thing for me has been being able to connect with all of the other Ambassadors. It's really great to have this network of like-minded, passionate people who are all fighting on behalf of patients with kidney disease. I am blown away by the amazing things that my fellow ambassadors are doing in their communities and nationally to bring attention to kidney disease and to support those going through struggles with kidney disease. It is so inspiring and energizing to be a part of community with them.
What have you learned from being an ambassador?
I've learned a lot more about the legislative process and how different parts of government work on the local, state, and federal levels. I've come to appreciate the important role that various different government agencies play beyond something just becoming law, too. Trying to understand the balance between competing demands and interests that our lawmakers face has also been very challenging but interesting.
Why should others become Ambassadors?
I think it's a great opportunity to have a positive impact while also having a fun time! I've always enjoyed making connections with other people, and there is such an amazing opportunity to both educate and connect with others simply through sharing your story with them.
How would you like to stay connected to other ambassadors?
I like staying in touch via Facebook and Twitter. Having an Ambassador group on Facebook is nice to be able to share things and keep everyone organized. It gets a little overwhelming to keep track of individual friend requests from other ambassadors and kidney advocates, especially if I've not met them in person.
What are your best tips to get through the dialysis treatments?
I was fortunate to be on peritoneal dialysis, which has a more flexible and accommodating schedule then hemodialysis. For me, it was important that I was able to keep living as normal a life as possible despite my dialysis schedule. This included being able to travel. It's not easy to travel on dialysis, but the effort it took was 100% worth it to give me a sense of normalcy and control in my life.
What do you wish elected officials knew about dialysis patients?
Kidney disease and dialysis have a tremendous impact not only on patients but also their family and loved ones. In addition to the physical burden of dialysis, there are frequent doctor appointments, financial stress, and constant worry and uncertainty about the future. However, given appropriate amounts of support, dialysis patients are still capable of living very full and productive lives.
Do you have any advice for newly diagnosed kidney patients?
It can be a hard road living with kidney disease. Life for people living with kidney disease isn't always easy, but you are stronger that you might think you are, and there is still so much that you can accomplish and contribute, not just in spite of your kidney disease but because of the perspective you gain from it.
How does it help having a family member be part of the process?
Having the support of a family member or other loved one is a tremendous benefit. There are a lot of things to balance as a patient with kidney disease, and having someone else there to help you manage those things is of great benefit. Even if they aren't able to directly help due to distance or other commitments, having the emotional support of someone to talk to as you go through the process provides a huge amount of support.
What do you wish other family members knew about kidney disease or knew about helping others?
Different people have differing levels of comfort with asking for and accepting help. Even if your loved one isn't seeking out your help or maybe even won't accept it when you offer, knowing that you are there to support them will help to comfort them and provide them strength.
What are some interesting facts about yourself that you'd like to share?
I used to sing in college and was lucky enough to perform at a variety of venues, including a women's prison, at Carnegie Hall, and on the Price is Right back when Bob Barker still hosted (I also got to celebrate on stage at the end after my friend won the showcase showdown!). In addition to being a pediatric nephrologist, I have a Ph.D. in biomedical engineering, and I am do research on growing kidney tissue. Thanks to my second transplant (and unrelated to my tissue engineering research), I now have four kidneys!