In honor of today being both Valentine’s Day and National Donor Day, we’re featuring a story that shows the power of love twice over! Meet Tracey Barbour. Tracey married her husband, Ian, in April of 2007 and was diagnosed with PKD just one month later. As a newlywed couple, they weren’t quite sure what Tracey’s diagnosis would mean for their future, but came to find that it would bring them even closer than they imagined:
PKD Foundation: Tell us a little bit about yourself.
Tracey Barbour: I’m 52 years old and my husband and I live in Manalapan, NJ. We love to travel, especially to our National Parks. When I’m not traveling, I work as an Executive Assistant and Bookkeeper at a house of worship.
PKD Foundation: How did you and Ian meet?
TB: Ian and I met in 2001 when we worked for the same company. He’s from the UK, and as a lifelong anglophile, I was attracted to his accent, but I also enjoyed talking to him about England. Our first date was in February of 2002—he took me to a hockey game at The Garden and then we went to dinner afterwards. It was the best first date I’d ever been on!
PKDF: What has been your experience with PKD? What have been the biggest challenges?
TB: Ian and I got married in April of 2007, and I was diagnosed just one month later after a routine blood test. My doctor called to tell me my creatinine was high. I didn’t even know what creatinine was! A follow-up ultrasound revealed multiple cysts on my kidneys and my liver. Next thing I knew, I was asking for a referral to a nephrologist and started reading anything I could get my hands on about PKD. No one else in my family has it. I even went for genetic testing to confirm the diagnosis and the doctors figured I have a spontaneous mutation. I completely changed my diet, avoiding salt, lowering my protein intake and going organic as best I could.
PKDF: A diagnosis like PKD is a lot for a newly married couple to take in—did you and Ian think it would have an impact on your relationship?
TB: We didn’t really know what it would mean. After we went for genetic testing, we began asking about our ability to get pregnant. I was afraid at first that Ian might resent me somehow when we decided not to have kids, but he was wonderful. He said he’d rather have me, and no children, than take the chance of having a child and losing me. In addition, the chances of passing PKD along are 50/50, and that was not a risk we were willing to take.
PKDF: When did Ian start the testing process to see if he could be a match?
TB: After about two years of me being on the transplant list. In that time, I kept up with testing and blood work as my creatinine went up and my GFR went down until it reached 12. Around that time, Ian came with me for one of my appointments and found out his blood type is O negative, the universal donor. Once we knew that, he decided to get tested, and it turned out he was a match!
PKDF: How did it feel when you found out he was compatible to give you a kidney? You were already partners in life at that point—what did it mean to you to know that he could give you this gift, too?
TB: To be honest, it was surreal—we’re from different countries, we’re different religions, what were the odds? I’m not sure I really believed in “soul mates” or “matches made in heaven” until I met this wonderful man, but when I found out he could give me a kidney? It made me a believer.
PKDF: How has your relationship grown since your transplant?
TB: It’s hard to explain. There’s something so incredible about always having a piece of him with me. We joke about it all the time, like on his birthday, when we realized I am 52, but one of my organs is 57!
PKDF: What advice would you give to other couples who want to go through or are currently going through the testing process for living donation for their partner?
TB: This is really a question for my husband, but he will tell you it is an amazing thing to do for someone you love, or for anyone, really. We both had an amazing experience, but his was so much easier than he anticipated. He was out of the hospital in two days and back at work in two weeks. He’s had no side effects, no problems. He even told the living donor institute at our hospital that he would be more than willing to talk to anyone who was having any doubts or concerns.
PKDF: Finally, how do you plan on celebrating Valentine’s Day this year?
TB: I’m a bit under the weather right now, so nothing too exciting, but we are planning a nice trip for our eleventh wedding anniversary in April! Thanks to Ian’s amazing gift, we can keep traveling together—our favorite thing!