The Phelps Family
During National Kidney Month in March, Ashley Phelps and her husband Michael sat down for an open discussion about her ADPKD diagnosis, how it affects their family, and what the future holds for their two sons:
Michael: How did it make you feel to be diagnosed?
Ashley: I was petrified. I had never heard of PKD and with all the negative information on the Internet, it was scary. There are scary photos and stories of scary outcomes out there. I had a 5-year-old, a newborn and a scary diagnosis. The word overwhelming is a great way to describe it.
M: What would you recommend to other PKD patients when dealing with doctors and hospitals?
A: You are your greatest advocate. Be up front with the doctors about exactly what you’re feeling, even if it’s out of your comfort zone to be blunt. Many doctors do not know very much about PKD, so tell them what works best for you! Take someone with you that will help you be up front. Definitely check with the PKD Foundation website to guide you in the right direction of doctors and hospitals.
M: What do you feel PKD has taken away from you?
A: I was diagnosed at the young age of 28. I am now 35, but I feel 65 most days. I feel like my youthfulness has been taken from me. It’s sometimes hard to keep up with my kids or clean the house or do the last load of laundry, so when I have “good days,” I try to take advantage of them as much as possible.
M: How do you deal with the pain on a daily basis?
A: Most days I am a six or seven on the pain scale. I have pain medication, but cannot always take it right away due to day-to-day activities. I try to focus on what I am doing and counting down the minutes until I can get relief, which may not be until the end of the day. This often times makes me irritable because I am so miserable. I consider myself lucky to have such an understanding family.
M: What can we do as a family to help you deal with PKD?
A: I would say to be understanding and forgiving. Most days are rough for me, so just understanding that I have rough days and forgiving me if I am crabby or grumpy because of the pain is helpful. Also, to remember that I don’t want to feel this way and that I often get frustrated because the pain constantly reminds me of my diagnosis.
Ashley: How did you feel when I was diagnosed?
Michael: I was very worried and upset initially, and then that turned to anger, but I was determined to find a solution to our problem.
A: What scares you the most about my diagnosis?
M: I’m scared of the idea that they will find a treatment, but not a cure for PKD, or that your body will reject the new kidney. I’m also scared that our kids might one day be diagnosed with PKD.
A: How are you so positive with everything we have going on? Even on my worst days?
M: I believe that you are one of the strongest people I have ever met. We will do whatever it takes to get you a new kidney, even if you have to have more than one kidney transplant in your lifetime.
A: How can other spouses be helpful to their loved ones with PKD?
M: Be supportive. Remain strong for them. Don’t sweat the small stuff. Stay positive. Be an advocate for them. Don’t take no for an answer. Ask as many questions as possible and learn as much as you can about PKD. Go to the doctor appointments with them. Never panic, even when you get discouraging news.
A: If one or both of our boys have PKD, how will you handle their diagnosis?
M: I will deal with it when the time comes. I do not worry about things we cannot control. If it happens, we will do what it takes to help them manage it until they need a new kidney. I will help them understand what PKD is and make them feel comfortable and show them you can live and even thrive with PKD.
To learn more about the Phelps’ story, watch our special Kidney Month video series.