Published May 12, 2020 | In these unprecedented times, families across the globe are adapting their way of life to stay safe and healthy. Living with PKD during the COVID-19 pandemic can be even more challenging. Whether you’re a transplant recipient, currently on dialysis, or in the early stages of kidney failure, adjusting to the new normal is a big change. Here’s how members of our community are living with PKD during the COVID-19 pandemic.
What’s been the most difficult adjustment for you and your family during the pandemic?
Nikki Wnuk: I’ve been fortunate enough to work at home for the past three years. My routine pretty much stayed the same. My husband, Jason, is a pastry chef and was let go due to COVID-19. Although it was upsetting, he’s now the “teacher” to our fifth and eighth-grader, Kortnie and Kahlen, who’ve had to adjust the most. I’m beyond proud of how they’ve adjusted. It took some tough love for Kortnie to realize she can’t hang out at friend’s houses, but they are taking this on like champs. Better than some adults I know.
Ellyne Dombro: The most difficult thing for me was starting dialysis. A catheter was placed in my abdomen which had to heal. After healing, I had to learn how dialysis works within the body with training through my dialysis unit, which took two weeks. There was so much to learn! It became my new normal.
JoAnn Villanueva: The only difficult adjustment and I would say it’s more of an inconvenience for me, is that my husband is restricted in going out. He’s been great completing several projects, but when he needs something, he doesn’t go into the stores. It would be much faster and easier rather than going online, ordering, and using curbside pickup. He restricted his outside activities because of me. When he does go out, he wears his mask, sanitizes his hands, and washes them when he comes home.
As a patient and/or parent, what is your biggest concern?
JoAnn: My biggest concern as a patient is that I will get sick and lose my kidney! My sister was the only person in my family who could donate a kidney. I’ve tried for the last 15 years to take good care of this wonderful kidney.
Ellyne: My main concern is I don’t want to be on dialysis for years, I have been on dialysis since June 2016. I was also on chemo (through a port near my upper right shoulder) from December 2020-February 2020. Dialysis is draining on the body.
Nikki: My biggest concern and fear is one of us getting COVID-19. It is especially scary for me and Kortnie as we both have asthma. I also have high blood pressure and I’m in stage three kidney failure. I know a few people who’ve been affected by COVID-19. Prayer and positivity, along with handwashing and social distancing, have been at the top on our lists these days.
What are you doing to stay physically and emotionally healthy right now?
Ellyne: I try to stay focused on the positive. I reach out to new patients who may not understand the seriousness of kidney disease at this time. I connect with several dialysis patients through phone calls and emails. Also, I’m involved with PKDF and NKF, and I’m training to become a peer mentor.
Physically, I’m doing things around the house, yard work, reading, and puzzles. I’m trying to take up an old interest, knitting, and taking walks with my family.
JoAnn: I try to walk daily, but it bothers my native kidneys if I do too much. Although I don’t have to, I try to find a reason to go upstairs a few times a day. Joking, laughing, and spending time with my husband is my emotional support. We always have music on during the day and there have been times that I just stop and dance “like no one’s watching.”
How are you staying connected with family and friends?
JoAnn: Thank goodness for technology. I’ve been able to keep in touch with my family through Facetime, Facebook, and Zoom. I was able to stand at the end of the driveway to visit with my sister, whom I hadn’t seen since March 4th. I’m also a pen pal to my four- and six-year-old grandsons.
Nikki: Connecting with family and friends has definitely been a challenge, and one of the hardest things we’ve had to accept. My birthday was right after everything got shut down. My friend wrote happy birthday to me on her window for me to see; another person left a present on the porch for me. Family came to see me knowing they couldn’t come in. It was a pretty cold day, and my family stood outside singing “Happy Birthday” to me. They didn’t let social distancing keep them away.
These small gestures meant so much to me. I think I can say it was one of the most special birthdays I’ve ever had.
After the COVID-19 pandemic passes, what are you looking forward to most?
Ellyne: To receive a kidney and live life normally—not connected to a machine!
Nikki: Going to the salon to get my hair done; I do not do hair. With that being said, I’ve cut our dog’s hair, trimmed Kortnie’s bangs, gave Kahlen bangs, and trimmed my own hair. In all seriousness, I cannot wait to see my family and give them the biggest hugs I’ve ever given. I want to hug my sister and my nieces so badly, my in-laws, my best friend. I want to see the look on my kids’ faces when they’re able to just be kids again. I’m just looking forward to taking in all of the things that have been taking for granted.
In living with PKD during the COVID-19 pandemic, there can be lots of questions. We’re committed to providing our community with important resources, including webcasts with healthcare specialists, and timely updates on social media. If you have questions or need help coping with PKD during this unprecedented health crisis, we’re here for you. Email or call (844) PKD-HOPE.
Good luck Nikki, you are doing your best to keep up your spirits and those of your family and friends. We all have a lot to be grateful for that we may have taken for granted. Unfortunately this is one more hurdle for some people with PKD. I wish you all the best.
Thank you so much, Dr. Myers. It means the world to me to have your support.
My husband has stage 4 PKD. He hasn’t left the house much in 14 months. When my daughter and I go out of the house we are extra careful, wearing a mask everywhere, keeping our distance, washing our hands and not staying out too long. We can only look out for ourselves. My problem is that other people don’t understand our situation, no matter how many times I explain that for us it’s different. We still have to follow the rules we had in March before masks and distance rules changed. They still don’t really understand and they still ask us to come visit them. Their lives are almost back to normal, visiting with each other, going on vacation, going out to eat, going back to work, shopping, etc. so they don’t understand why we are not. I would love to be back to normal. It’s just not our time yet. I feel bad not seeing family and I feel angry that they still can’t put themselves in my shoes and understand why we’re still being so careful. How do you deal with people who like this?
Being able to hug my mom again in person and spend time with her… not at a window and not behind a glass partition. Be able to go to her room and spend a day with her in the nursing home. I pray it can happen before it’s not too late. She has Alzheimer’s
I found this article very interesting, thanks for sharing
“68” and I live with a community of 55+ apt. dwellers–mostly shedding spike proteins (from multiple covaxes.) I’ve followed the FLCCC protocols for C19 prophylaxis, but contracted ‘covid-pneumonia’ (?) in mid-Dec. 2021. I spent 5 days in ICU after self-admitting with my blood oxygen declining into the “80’s”. Steroids + O2 turned me back to ‘normal’, though I took a hit with AKI dropping my eGFR by 37%. It popped back to normal once-cured but has dropped back 21% recently from pre-C19 levels. My PCP says “my antibodies are ‘robust’ “. I go about my former activities mask-less, still taking FLCCC pre-plus-post-C19 OTCs. (No covaxes for me ever!) My biggest problem is hip-pain carrying #40+ EXTRA WEIGHT (from ADPKD ‘twins’). (I’m transplant-listed but ineligible due to my covax refusal stance.) Periodic symptoms of uremia foretell home PD is forthcoming…