A Fond Farewell

When living with a genetic disease, such as PKD, we have seen and felt the effects of it throughout multiple generations. Quite often I hear others share stories of numerous family members they have lost, who have battled PKD. No matter what we are fighting, most of us share a common sentiment: the will to survive. My health issues have given me a vantage point that life is precious, however when someone we love passes, my perspective takes on new dimensions with crystal clear vision.

Carol with dog

PKD Will Not Beat Me

END PKD 2PKD Will Not Beat Me is my motto, my mission and my passion. It’s how I stand up to our disease and show it who’s in control. It is how I lead my life and I try to encourage others to incorporate this theme into their lives. These five words are a constant reminder that I am strong and that this disease does not define me. Although I look healthy on the outside, I have more than 45 inches of scars that trace my PKD and health journey, as another remembrance that I fought the good fight and will continue to do so. I have and continue to stand up to PKD by equating those three letters to, Positivity, Knowledge and Determination.

Celebrate World Kidney Day

world kidney day“A new study published in the ‘American Journal of Kidney Diseases’ finds that more than 50% of middle-aged adults in the US are at risk of developing chronic kidney disease at some point in their lifetime.”

Let’s give a big ‘thank you’ to all kidneys! From the pristine to the cyst-riddled. The kidneys that are the size of our fist to the size of a football. All of the full-functioning beans down to the ones that are hanging on by a thread. To the kidneys we are born with to the ones so graciously donated to us. Today we celebrate you!

Challenge Accepted

When diagnosed with polycystic kidney disease (PKD), facing and overcoming challenges are part of the disease. This month, the PKD Foundation is hosting a month-long challenge. One that if accepted, will help others and ourselves. Are you up for the 31 Days of PKD Challenges?

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In honor and celebration of March’s National Kidney Month, the PKD Foundation has selected simple, daily challenges that can help raise awareness of PKD. I hope you will join me in participating in the fourth annual 31 Days of PKD Challenges! Please follow along on Facebook, Twitter and Instagram for daily updates on our progress. Share your progress too, using #PKDChallenge, #kidneymonth and #endPKD.

Hello Hope

I was standing with my back toward the wall at Starbucks in the Sacramento International Airport, waiting for my tall, iced, green tea unsweetened with two Splenda Sweeteners. I was wearing a mask to protect myself from germs, and a sweatshirt I had created when I rode on the Donate Life Float in 2011. It has a picture of my organ donor on the front and the words, ‘I love my living donor,’ ‘END PKD’ down one sleeve, ‘Donate Life’ down the other sleeve and the 2011 Donate Life logo on the back with the words, ‘Transplantation Works, Kidney Recipient.’ I noticed the woman to my right was looking at me. Wearing a mask attracts attention so I didn’t think anything of it. She asked, “Did you receive a kidney transplant?” I said, “Yes, I did. Thank you for asking.” We chatted for a few minutes and discovered that a friend of hers has PKD and received a transplant, too.

Dating The Sick Girl

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I was in my early 20s when I first met my husband, Noah. We saw each other two nights in a row at different locations. The friends we were both with knew each other. The second night we saw each other, we were listening to a band and Noah said, “Can I buy you a drink?” I said, “No thanks, I had a kidney transplant.” Now that I look back, I could have been a little more subtle on sharing that information, but I’d rather be upfront. Noah’s beaming and full-of-life smile led me to giving him my number.

Germaphobe

Upon becoming a kidney transplant recipient, we must take lifelong medicine that suppresses our immune system to help prevent our body from rejecting the donated organ. At this same time, germs take on a whole new meaning in our lives. Hand sanitizer and disinfectant wipes are within arm’s reach. Masks are worn while traveling, such as when a passenger on an airplane. Our loved ones open doors for us to prevent us from touching possible infected surfaces. Our elbows and hips are used more often than our hands to protect ourselves from coming in contact with germs. If we know someone is ill, we try our best to stay far away. As soon as we enter our home, the first thing we do is wash our hands.

32 Candles

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During the silent moment prior to blowing out my birthday candles, I always think of the reality that I was not expected to see my 19th birthday. Also, that it is a true miracle I have turned 32 years old today. Thirty-two! Wow! It is hard to process all I have endured and how lucky I am for the second chance at life I’ve been given.

A Wild Adventure

Noah & I hikingIt is easy to become creatures of habit. Some parts of our daily routine are mundane while others we look forward to. Noah and I used to have a steady routine of taking evening walks and hiking adventures on the weekend. We would drive down into the canyon behind our home and walk along the trails by the American River. Our evening hikes would range between two to four miles. Some trails ran parallel to the river, while others ascended up the canyon giving us a bird’s-eye view of the beauty that surrounded us. This was a delightful way to spend our evening together, holding hands, talking about our day and how we love where we live. This was my favorite part of my day that I greatly miss.

The Confluence of Life and Loss

Donate Life Float 2I stood up from my workstation and looked around to take in my surroundings. Try to envision “Santa’s Workshop” and that is what my eyes saw and what filled my heart on Dec. 27, 2014. Lots of people working diligently with smiles on their faces, love in their hearts and all with a strong connection to inspire the world to Donate Life. I was in a large warehouse in Pasadena, California, which housed several floats that would later ride in the 2015 Tournament of Roses Parade. My husband, Noah, and I had the honor of helping to decorate the Donate Life Float.