Our volunteer Coordinators take on many important roles as part of their involvement with the Foundation: leaders, educators, fundraisers, caregivers and more. We recently caught up with Hudson Valley Chapter Coordinator Darien DaCosta, who has taken on all of these roles over the course of his journey with PKD and the Foundation:
PKD Foundation (PKDF): What is your relationship with PKD?
Darien DaCosta (DD): I had never heard of polycystic kidney disease until 2008, about six months after getting married. My wife Josie and I should have been planning our future together, but instead had to plan how best to move forward with handling her PKD diagnosis. The diagnosis was totally out of the blue. I had encouraged her to visit my doctor for a physical since it had been a while since she had one; Josie did not appear sick and was not complaining about any symptoms.
The doctor contacted us and asked Josie to have her lab work redone; they wanted to double check an anomaly, but would not elaborate. After the second round of tests, the doctor called and said he suspected Josie had polycystic kidney disease, to which we responded something like “Poly-what disease?” The diagnosis was confirmed sometime later after visiting a nephrologist and undergoing additional tests.
Over the next 12 months, Josie’s kidney function dropped significantly. However, she was fortunate to receive a living donor transplant in 2009 from her youngest sister, Frances. Even though she received a kidney transplant, she still has PKD, since a transplant is very much a temporary treatment.
PKDF: What has been your experience with PKD?
DD: Prior to Josie being diagnosed, neither of us had any experience with the disease. We later discovered that Josie was a “spontaneous mutation,” that she was the first person in her family to be affected by PKD. A positive aspect of this was knowing that no one else in the family had PKD, as I would not wish the disease on anyone. This also meant it was likely that Josie would be able to receive a living donor transplant from a family member when the time came.
The downside to being a “spontaneous mutation” is that since no one in your family has the disease, no one understands it or can relate to what you are going through; you have to seek that type of support from outside sources. It was difficult having to explain to both of our families how she ended up with a genetic disease that did not affect anyone else in the family, especially since we were still learning about PKD ourselves. It was difficult to explain to her parents that this was a spontaneous, random occurrence, that there is nothing they could have done to prevent it, and help them understand that they are not the reason why she has PKD.
My experience with PKD has changed over time; Josie is no longer the only person that I know with PKD. Since we are involved with the PKD Foundation and the Hudson Valley Chapter, we know a lot of people that are affected by PKD, many of which we now consider to be friends and part of our PKD Family.
PKDF: What have been the biggest challenges about dealing with PKD and how do you deal with them?
DD: The first challenge we faced in dealing with PKD involved making sure we had the right doctor. After Josie was diagnosed, my first concern was doing research and getting the information necessary to make educated decisions. One important lesson we quickly learned is that you need to advocate for yourself, and if you feel that your doctor isn’t focusing on the same goals as you, it may be time to find a new doctor.
Josie’s doctor was focused on preparing her for dialysis, which scared her, so we decided to focus on transplantation and finding a kidney donor. After researching doctors that specialized in PKD, making calls, and overnighting a letter and medical records, I found Josie a new doctor that better explained her options and was focused on treatment options that aligned with our goals.
The biggest challenge we faced was not only finding a living kidney donor, but learning how to ask someone to be a kidney donor. How do you ask someone to give you a part of them – literally? It was difficult to ask people to understand and appreciate an illness that they never heard of and to take the disease seriously. The first person who messaged me and offered to donate a kidney was Olga, a friend and former co-worker. I was so touched by her offer that it took about 3 days to respond to her, because I did not know what to say; somehow the words “Thank You” did not seem like enough.
One of the unique aspects of PKD is that it can be a hidden disease for a long time. Many people don’t know they have PKD until much later in life – we did not know Josie had PKD until she was 37-years-old. PKD is an illness that does not have an immediate outward appearance; many people with PKD look “fine” on the outside and it is not obvious that they are dealing with issues inside, both physically and emotionally.
Looking “fine” on the outside is a challenge when you are searching for a kidney donor, as there is a chance that people may not take it seriously. A major part of our search for a kidney donor was a Facebook campaign; since we were not comfortable asking people to donate a kidney, we instead asked our friends on Facebook to “share their status” and post about Josie’s need for a kidney transplant. While many people reached out to us and offered to be evaluated as a potential donor, including friends, family, and complete strangers, one of the problems was that some people don’t act quickly because of how you appear on the outside. Josie looked “fine,” so there was not a sense of urgency to act right away.
The best way to deal with the ongoing challenges of being a caregiver for someone who is a PKD patient and a transplant recipient is to handle one thing at a time, one day at a time. It is easy to get overwhelmed with the responsibilities that are part of living with PKD. Focus on one thing at a time, and you will get through it.
PKDF: How did you initially get involved with the PKD Foundation and what inspired you to become a Coordinator?
DD: After Josie was diagnosed, we researched PKD online and found the PKD Foundation, which we found to be a valuable resource. We attended the PKD National Convention in 2009, learned a lot about the disease and the treatment options that were available at the time, and met people in different roles who were affected by PKD. We also learned about the Walk for PKD and the local volunteer Chapters.
We reached out to the Hudson Valley Chapter and attended our first Chapter meeting in August 2009. It was great to get to meet people in the PKD community, and we immediately decided to get involved with the Hudson Valley Chapter and the Walk. In 2011, the Chapter needed a new Walk Coordinator, and Josie and I agreed to take on the role so that this important event would continue in our community.
Even after taking on the Walk, we wanted to do more in our community to raise awareness of PKD and raise funds for the PKD Foundation. We knew that there were people we could reach inside and outside of the PKD community that were unaware of the local resources and support that they could get from our Chapter. In 2011, we started planning another fundraising event, and when the Chapter Coordinator position opened up, we took on that responsibility as well in order to move the Chapter in a new direction.
PKDF: What do you do to fundraise?
DD: In addition to the Walk for PKD, we host a “Cocktails for a Cure” event each year; the event is meant to be a fun evening for people to come together along with their friends and family to enjoy an evening of music, dinner and drinks, meet new people and participate in a raffle prize or silent auction. This is also an opportunity for people to learn about PKD and the PKD Foundation, especially those who don’t tend to participate in the Walk.
We occasionally try to hold smaller events when possible to not only raise awareness, but to let people know about the Cocktails for a Cure event and the Walk for PKD. Part of the goal with smaller events is to try and raise interest in the larger events to increase attendance and fundraising levels in the future.
PKDF: What advice would you give to someone who is thinking about starting a fundraising event?
DD: I would say:
- Plan. Planning is everything; before you pick a date or get too involved in the event, figure out what type of event you would like to have, where you will have it, who your audience is and how you will promote it.
- Don’t rush. Take your time and plan the event slowly. Make sure you have everything you need figured out. Give yourself at least a six-month lead before the date of the event.
- Ask. Don’t be afraid to ask for donations, items for a raffle or auction, and most importantly, don’t be afraid to ask for help. Likewise, don’t be discouraged if you get “No” for an answer; move on and ask the next person. You might be surprised at the response you get just by asking.
- Don’t compare. Your event is unique. Some events take time to build up. Work on making your event better each year.
- Learn. Learn from your event, and especially your mistakes so you know what you can do differently next time to make your event even better.
To take on leadership and fundraising initiatives for PKD in your area, find your local Chapter and get involved today!