Yesterday I was asked, “How does it feel to be a spokesperson for so many causes where people look at you and the first thing they think of is your kidney issues?” The first thought that popped into my mind was that it makes me happy and proud that I have succeeded and accomplished my goal by having someone ask me that question. This means that I am helping to put a face to kidney disease and raise awareness so that hopefully when we say “PKD,” people will know what it stands for and, most importantly, there will be a cure one day! I had never been asked this question and have been pondering it since yesterday.
A young woman around my age who also has PKD asked me the question. Her kidneys are in perfect health and she said she went through a time of being very angry that she has PKD and pretending that she does not have the disease; a phase of denial, I guess. She said she still has a love-hate relationship with PKD where some days she is compelled to want to help and other days she does not want to think about it. When I think back, I never went through this. I was diagnosed at 10 years old and was in and out of the hospital due to cyst bleeds and complications throughout middle school and high school, and I don’t recall ever being angry. I accepted the fact that I had this disease. My first thought was that I did not have time to feel anger because at 18 years old, when I was in the hospital for so many months, my main focus was living to see the next day. Never angry about why I was there! But realistically speaking, I have had plenty of years since then to be angry because of PKD. I can’t help but wonder if it is strange that I never went through a bitter phase. Or does that solidify a feeling that I have been put on this earth and am still alive today to use my life experiences as a tool to help others?
As we wrap up Donate Life Month, I sure have enjoyed seeing the camaraderie, with all of us touched by organ donation and how everyone has been sharing the miracle of transplantation so beautifully. I kicked the month off by honoring Sally, my kidney donor, and sharing why she felt compelled to give me the gift of life by way of a kidney transplant. Then during week two, I expressed how amazing I felt when I awoke from my kidney transplant and how others have the power to donate life and give others a second chance like I have been so fortunate to have been given. The next week I reminisced on last year’s Donate Life Month and wrote about the interview I had with the Auburn Journal. I am proud to say that article was published on the front page of the Auburn Journal on April 18, 2013. The writer, Andrew Westrope, did a tremendous job. Please read the wonderful article at: http://www.auburnjournal.com/article/kidney-transplant-helps-auburn-resident-find-new-purpose.
This week, I wanted to wrap up the month and share some fun Donate Life spirit! First off, thank you to those who participated in my Blue & Green contest and posted your pictures on Facebook. Trina Brooks Layne received the most “likes” and won an autographed copy of my biography. For April 19th, National Donate Life Blue & Green Day, I sported a cheery blue and green outfit, with a scarf handmade by my mom. I love baking and I made festive blue & green cupcakes and displayed them in the fun swirl shape that is used in the Donate Life logo. My parents live in PA and my mom surprised me on Donate Life Blue & Green Day with some awesome photos that celebrated the day. My mom and my parents’ sweet dog, Zsa Zsa and Princess Kitty showed their spirit for this vital cause by “wearing the colors.”
Thanks to the miracle of transplantation, I am grateful to be 30 years old, for not everyone has the opportunity to see 30. When you are given a second chance, it makes aging all that more beautiful. Looking back on Donate Life Month, I am proud to be a Donate Life Ambassador, a kidney recipient and part of such a full-of-life and passionate group of kindred spirits who really seize every day. When I was 19, I was fighting for my life and in desperate need of a transplant to survive. I was only known as the super sick young woman in the hospital who might not make it. So when thinking of the question I was asked yesterday for the first time, “How does it feel to be a spokesperson for so many causes where people look at you and the first thing they think of is your kidney issues?” My answer is … It feels wonderful to be alive!!!
I hope all of you have enjoyed the posts this month in honor of Donate Life Month! I am curious to know if any of you have gone through a denial and/or angry phase when dealing with being diagnosed with PKD. If so, how have you dealt with it and do you have any advice on how others can cope with being upset about living with PKD?