We all have different perspectives on life and living with PKD. Our uniqueness makes the world a beautiful place, and we can all learn and grow from each other. After speaking to more than 85 audiences across North America over the years, I’ve received an array of responses when educating others about PKD. Some people deeply connect to my story because they live with the disease every day; others are medical students fascinated to talk to a person with PKD versus learning about the disease from a textbook. I’ve spoken to doctors and researchers who are working tirelessly to find a treatment and cure for PKD patients. One audience of eager listeners that stands out in my mind, however, was a group of third graders at Hayshire Elementary School in York, PA.
As children, we are encouraged to get involved in pastimes such as sports, clubs and hanging out with friends. I recall doing ballet, gymnastics, singing lessons, piano and sleepovers with friends. When you talk to parents, it almost seems like their main job is to drive their children to different activities. As adults, it is easy to get distracted and lose sight of our own interests. We’re busy working and helping others like our family, or if we are PKD patients, busy caring for ourselves.
Awareness is a big part of my life: being aware of my health, how I am feeling, knowing that I am taking the best care of myself and being an educated patient, being mindful of others and understanding how I can help them along their journeys, and spreading awareness of PKD and organ donation.
Disclaimer: This post contains an instance of graphic detail regarding the effects of internal bleeding.
Noah and I have lived across the country from family and friends for six years. We often say that we spend more quality time with them versus quantity time given that we see our parents only once or twice a year since moving from Pennsylvania to California.
Some things are too grand for the mind to comprehend. For example, I am having trouble processing that my 14-year kidney transplant anniversary will be two days from now. It’s hard to think that, 14 years ago, I was basically on my deathbed. There were, however, a few key people who believed I would survive – including myself – who wanted me to live and helped make that happen.
Life is full of challenges, triumphs, pain, joy, sorrow and milestones. It is a beautiful work of art full of peaks and valleys that will include happy events and sad ones, good health news and bad news, too. The sooner we embrace the ebb and flow of life, the more enjoyable it will be.
When hearing the words polycystic kidney disease, it is easy to think that we endure a disease that only affects our kidneys. However, PKD is far more than that. We can face issues like aneurysms, diverticulitis and high blood pressure, to name a few. Living with PKD means we are likely managing and dealing with several things along with keeping our kidneys and the rest of our body healthy. Plus, there are patients like myself who have additional health challenges that are completely unrelated to PKD. For instance, I have epilepsy and scoliosis, which has led to multiple back surgeries and chronic pain.
It’s hard to believe it has been 23 years since we met. You arrived in a fierce and unforgettable manner. I went from having no clue who you were to having an alarming blood pressure reading of 160/140 mm Hg as a 10-year-old, and then being diagnosed with you. Wow, you wanted to be heard and you were, loud and clear. From that day forward, you have led me down a very unique path, one I wouldn’t wish on anyone, yet I’m okay with it. What other choice have you given me?
PKD makes us endure so much physically that it can take a toll on us emotionally. Our emotions can keep us stagnant, propel us forward or hold us back. Sometimes we don’t have full control over our health, but we may have some control over our emotional wellbeing.
Being a patient is no easy feat, and I believe the same applies to the person caring for a patient. I’ve been dealing with health issues since I was a little girl, so being a patient is second nature to me. I’ve had to be a caregiver only once, for my husband, Noah. I quickly learned how challenging and stressful caring for someone else could be.
Life has taught me how adaptable we are to change and how fun change can be. Today marks six years since Noah and I arrived in Auburn, Calif. following our month-long cross-country move from Pennsylvania to California. I couldn’t be happier or prouder of our decision to spread our wings and venture west.