Dad’s steadfast support

Disclaimer: This post contains an instance of graphic detail regarding the effects of internal bleeding.

Dad and Valen as child

Valen as a child with her Dad

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.

14 years of life post-transplant

ENDPKDSome 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.

Finding the Positives

Pilates instructor in Sedona AZWhen 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.

An Open Letter to PKD

Valen as a child (1)
Dear PKD,

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?

To My Younger Self

Valen as a childI’ve learned a lot from living with PKD since the age of 10. PKD and the health issues I’ve endured have taught me all facets of strength, emotionally and physically. I believe what we go through in our youth has a large impact on our future. We learn and grow from experiences. At times when reflecting back on our childhood, we say, “I wish I would have known then what I know now.”

Looking back on living with health issues as a child, I would have told my younger self:

Build Your Community

Participants of the South Central PA Chapter’s Walk for PKD

I think people would be surprised if they knew how many PKD patients live close to them. I spent a little over a decade after being diagnosed at age ten without ever knowing or crossing paths with anyone outside my family with the disease. The only reason that changed was because I founded the South Central PA Chapter of the PKD Foundation in 2004. By taking this major step, my PKD family grew in spades and in a very positive way.