Published March 27, 2020.
With COVID-19 making headlines on a daily basis, people across the globe are left wondering how to decrease their level of risk. Mitigating exposure and maintaining a healthy lifestyle is especially top of mind for those with serious chronic medical conditions. We sat down with Nicole Harr, Director of Community Engagement, to hear how members of the PKD community are staying healthy, positive, and proactive amidst the ongoing pandemic.
What questions are you seeing from our community? What’s important to PKD patients?
Nicole: We’re receiving daily questions from the PKD community about the COVID-19 outbreak. The theme we’re seeing is that our patients really want to understand their risk of catching the virus. To help answer these questions, we created a resource page specifically for PKD patients and are updating it several times a week as new information becomes available.
How do you think the PKD community can stay connected throughout this period?
Nicole: I have always found the PKD community to be incredibly supportive of each other. Whether patients and families are together at local and national events or connecting through social media, there’s always someone out there who will lend a listening ear. During a time when we’re unable to physically get together to offer support to one another, I’m seeing continued support on social media.
Anyone in need of support or resources can contact PKD Connect staff by calling our HOPE Line at (844) PKD-HOPE or emailing us at pkdconnect@pkdcure.org.
Nicole’s granddaughter, Finley.
As someone who has PKD, what are you most concerned about?
Nicole: Being a transplant patient means that I will always need to be extra diligent about staying healthy. In this unprecedented time, I’m concerned for everyone. We are taking this very seriously and my family is taking every precaution to ensure that we all stay well. The hardest part about this for me is knowing that should someone in my family get sick, I wouldn’t be able to care for them.
What are you doing to take care of your physical and emotional health?
Nicole: I’ve been isolated in my home for three weeks. My husband and I are ordering essentials online and staying out of public places so I am comfortable that we are as safe as we can be from getting the virus.
Emotionally, it gets more and more difficult with each day. The news is hard to hear. I try to take time each day to do something I enjoy, like cooking and trying out new recipes. We also take time each evening to relax and get away from the news.
How do you stay positive during such a difficult time?
Nicole: I had a kidney transplant in June 2018 from a living donor. There isn’t a day that goes by that I don’t think about how grateful I am to feel good and have many years ahead of me to spend with family and friends. I am holding on to the fact that this will pass and things will get back to normal. When the reality of what we are all going through gets to me, I think about the things that I love doing and that I’ll be doing again as soon as it’s safe. For now, I’m using FaceTime to visit with family and friends and I’m using up some of my energy doing something I love to do—organizing!
What are you most looking forward to doing after all of this is over?
Nicole: On Sunday, I like to cook for my family and I really miss that. I am ready to hug my children and spend some time with my granddaughter.
Now, as always, the PKD Foundation is committed to our mission of giving hope, advocating for patients, and building a community for all impacted by PKD. We will continue to support our community by providing important resources and timely updates on social media. If you have questions or need help navigating this unprecedented health crisis, we are here for you. Email or call (844) PKD-HOPE.
If you just have ADPKD but currently have “working” kidneys are you still considered a person in “high-risk category” for Coronavirus? For example would I be likely to go into kidney failure if I were to contract the virus?