Published October 22, 2019
A few weeks ago, Nicholas Yee and his nearly 100-person team attended the Sacramento Walk for PKD. We spoke with the “PKD, You Kidney Me?” Team Captain about his recent diagnosis and experience with the PKD Foundation’s Walk for PKD.
How old were you when you were diagnosed?
I was 23 when I was diagnosed with PKD.
Does PKD run in your family?
Polycystic kidney disease (PKD) does not run in my family; therefore, I am assuming it was a spontaneous mutation.
How were you diagnosed?
Early last year, I got into a bike accident and during the follow-up appointment, the health care provider I had never seen before was concerned with my blood pressure. It was unusual for someone my age to have high blood pressure. I’ve had high blood pressure for a few years but I was never diagnosed with hypertension. At the time, I didn’t think anything of it since I was a student studying for midterms and finals. As a result of my ultrasound, which showed multiple cysts in my kidneys, I was referred to a nephrologist who diagnosed me with PKD.
Did you have any symptoms before your diagnosis?
I had chronic hypertension and blood in the urine.
Were you diagnosed with ARPKD or ADPKD?
Most likely ADPKD since it didn’t occur until adulthood.
What was it like learning that you had PKD?
Honestly, it was depressing because I have never heard of polycystic kidney disease and when I looked online at the statistics, I learned that more than 50% of PKD patients have kidney failure by age 50 and that each kidney can grow to the size of a football weighing up to 30 lbs. It was also discouraging to know there is no cure for PKD. Those statistics alone made me realize I needed to take control and make some healthy changes in my life.
How has your diagnosis impacted your life?
The first change in my life was my diet and staying hydrated. I increased my water intake to slow the growth of the cysts. The nephrologist recommended the DASH diet, which helped me learn what kinds of foods would be beneficial to my kidneys. As part of my diet restriction, I must limit my protein intake to 50g a day, which was a considerable hindrance to my bodybuilding dreams. Just kidding. I do enjoy being active, but unfortunately, I have shifted from weight lifting to cardio. I was also advised to be conscious/careful with contact sports such as basketball since it could cause my cysts to rupture. I know I will eventually need a kidney transplant and/or dialysis if I do not find a donor. Hopefully, it will be many years from now since I was diagnosed early and am in the monitoring stage.
What made you decide to join the Walk for PKD?
When I was diagnosed in September 2018, I found the PKD Foundation website during my research and attended the Sacramento Walk for PKD to learn more about the disease. It was an enlightening event to hear personal stories and about others’ fight against PKD. As a former volunteer and supporter of other runs/walks, I noticed the Sacramento Walk for PKD was by far one of the smaller events I have attended. With that said, I felt the need to bring awareness and raise funds to help find treatments and a cure to end PKD. Since this is a genetic disease, I know that finding a cure will not only help me but for future generations as well.
This year, you came out with nearly 100 people on your team and you were able to raise a significant amount of money. Tell us what motivated you and your loved ones to participate in the Walk at such an impressive level?
I did not realize so many people would participate in this Walk, but surprisingly everyone wanted to show their support after I shared my story.
In 2018, we had a family of three attend since my brother was unable to attend at that time. So to go from three to almost a hundred was a huge blessing but also very overwhelming. What really motivated everyone was the love and support for our family. I am so humbled by their kind words of encouragement, prayers, financial support, and presence as they all rallied and attended the Sacramento Walk for PKD to support me and my family through my PKD journey.
What was it like to rally this large of a team?
I was touched by the amount of supporters that came to the Walk. We really did not anticipate the overwhelming response and support from our family and friends. As far as rallying such a large team, my mom played a vital role in organizing it. She coordinated the team shirts, made sure each attendee received the appropriate shirt size, informed everyone of where to meet, and baked goods to thank the organizations that supported us. Most importantly, my family and I tried to thank each individual who either donated or attended because without our supporters, we would not have been so successful.
What was it like to share your diagnosis with so many people?
My family and I are very private, and we have kept this diagnosis to ourselves for nearly a year. It was very difficult to share my personal story, but I knew I had to share it in order to raise awareness and to help find a cure to end PKD. Initially, I thought I would share with my friends so they could help keep me accountable with my diet, stay hydrated, and exercise. It all happened so quickly; I shared on Facebook and it exploded. My post was shared over 20 times and people were quick to read and send words of encouragement and support. My mom and brother e-mailed friends and family and shared my post as well. Which helped spread the word even more.
Were you nervous about sharing your diagnosis?
As a private person, I was very nervous about sharing. However, I was motivated by my cousin because he wanted to create a website to bring awareness and to support me and others with PKD. In order for him to share, I had to be willing to share my story, so that was when I took it to social media.
How did others respond to your diagnosis?
My friends and family were surprised, but many of them were also confused because they have never heard of polycystic kidney disease. They responded positively by helping me spread the word to raise awareness, joining in my Walk, donating, praying, and encouraging me. My employer, Sacramento Asian Sports Foundation (SASF) worked collaboratively with SplaT T-shirt company who sponsored and donated my team “PKD, You Kidney Me?” T-shirts for all the supporters that attended the walk. Almost one-third of the attendees were my co-workers from SASF. In addition, my dental hygienist raised hundreds of dollars by sharing my story at her office and attended the Walk. My auntie came from Southern California to attend the walk and also raised over $1,100 of the $7,220.
What advice would you give others who have PKD who may be afraid to share their diagnosis?
It is life-changing; however, it is better to have people who know and that will encourage you to stay positive and keep to a strict diet. Life is better with family and friends who are there to support you! I personally could not do it without them!
What would you tell others about the Walk for PKD and why should they attend?
The Sacramento Walk for PKD had many different speakers. Each of them with their own story. And if you know someone with any chronic disease you can really empathize with them. It is also an opportunity to learn from others living with the disease. And especially encouraging to hear their success stories. But I realize that some PKD patients are going through dialysis and still waiting for a kidney donor. So my hope is to bring awareness to this disease and to help find a cure.
What advice would you give others about gathering a team?
“Don’t be afraid to share” because you do not know how people will react and you might be surprised how much support you will receive. You will not know until you try.
Anything else you would like to share?
I want to thank the Sacramento PKD Foundation for volunteering their time to make the Walk a success. But especially for my family and friends for their continued love and support! I take comfort in knowing many family and friends are praying for my family and me through my PKD journey.
This year, 54 Walk for PKD events will take place across the country with a goal of raising $2,000,000 for PKD research. Though there are only a few Walks left in 2019, we will continue fundraising through December 31. Donate to a Walk today!