Ed McVey and his daughter, Meredith.
Hello, and Happy Father’s Day to all the dads! My name is Ed McVey and my daughter Meredith has PKD. When I was asked to tell our story for this blog post, I realized how important it is to talk about the disease and raise awareness.
My daughter was diagnosed with PKD four years ago at the age of 23. We had no history of PKD on either side of the family, and came to learn that Meredith was one of the approximately 10% of PKD patients that acquire the disease through a spontaneous gene mutation.
The news was difficult to receive and came with a range of emotions. As a father and parent, I always want to protect my children and to be able to “fix this” for my daughter. It was a terrible feeling when I first realized that I couldn’t, and I will always remember when I said these words to her, “I can’t fix this for you.” What I did know is that we should learn as much as possible about the disease.
(L-R): Michael, Cathy, Meredith and Ed McVey
An odd coincidence is that I had previous knowledge of the disease through my personal friends in Kansas City, Kevin and Sue Full. Their dear friend has PKD, and over the years, they have hosted golf outings and raised donations for PKD research. I participated in those events to support “their” cause, but little did I know that PKD would later become “my” cause too. As Sue works for the PKD Foundation, she was able to provide a great amount of guidance for us after Meredith’s diagnosis. Since then, we’ve committed to learning everything we can about PKD as a family.
The McVey’s at the Milwaukee Walk for PKD.
The realities of learning about PKD was a sobering and emotional process. Our decision to get involved with the PKD Foundation has helped us to cope with the emotional aspect of living with PKD. My wife, Cathy, attends the local PKD Foundation Milwaukee Chapter meetings along with Meredith. Our extended family, friends, neighbors and co-workers have joined us in raising research funds and many join us for the annual Walk for PKD. Our team is affectionately named “Meredith’s Minions.” We also attended our first National Convention as a family in 2016 in Orlando, and will attend the 2018 PKD Connect Conference this year in Kansas City.
While no one affected can put a positive spin on a PKD diagnosis, we have great hope and confidence the research will continue to progress and yield an end to PKD. We are so encouraged by the recent approval for the drug tolvaptan as a treatment and are confident it will lead to even more treatments in the future.
Team Meredith’s Minions at the Milwaukee Walk for PKD.
I love my daughter and would do anything for her. We’ve met so many new and wonderful people who share a common bond through this disease. Meredith and all of us will continue to work, love, share and do all we can to support each other.
Thanks for letting us share our story. Let’s all continue to bring support and awareness to PKD.
How are you celebrating this Father’s Day? Share in comments below!
Thanks for sharing ED. My husband and I had a similar story when our daughter was diagnosed 12 years ago at age 16. She too is a mutation although I had 2 brothers who died of kidney disease back in the 60 s.
We became very involved with the PKD Foundation also and are so grateful for their tireless work to find a cure! Thanks again for your story!!
My family and I have been on this journey for 28 years and am now in Stage 4. Mine came genetically from my father, who started dialysis @64, had a transplant @67, developed lymphoma as a result of anti-rejection drugs, resumed dialysis, and passed at 78, following a debilitating stroke @78. As I approach age 60, I am more and more aware of what is to come and am excited about the research. I really tried to do my part by being part of the Tolvaptan study, but was unable to continue, due to negative affects (weight loss, lower GFR, etc..), although I was given a very high dose. The silver lining came a couple of weeks ago when I met a delightful younger woman, whose PKD is not genetic, who early on this journey. I plan to be there for her and remind her we know such more now, than when I was first “probable” diagnosed in 1990. Blessings to you and your family on this Father’s Day!