Noah and I went back to the very spot we got married in Yosemite National Park to mark our 5-year wedding anniversary. When taking trips, I constantly hope that my health will cooperate and I won’t have any medical “hiccups” that will alter our plans. I’m sure other patients share the same sentiments. However, I will never live in a bubble—my desire to experience and soak in life as much as possible is far too strong for that.
This is part of a special series for the month of November, where we share with you what some of us in the PKD community are thankful for this year.
“My mom never told me that she loved me.”
My heart sank when my 93-year-old grandmother shared this in a recent phone conversation. My grandma and I had a meaningful talk about life and the importance of love. We were discussing my recent health episodes and I told her how thankful I am for the love that surrounds me.
It is nice to have wish lists in life, but when it comes to our doctors it is important to get not only what we wish for, but also what we need. Therefore, I think it is important for us to have a doctor checklist. I’ve been seeing doctors since I was five years old, and I am now 33. I am big on first impressions and also the connection between the doctor and the patient. Doctors can be just as conditional as food and places, just because one person loves a doctor, doesn’t mean everyone will.
In life, we are often encouraged to follow our heart and listen to our gut. It simply means to trust our intuition. I believe this is a big component of caring for ourselves and making wise health decisions. After living with medical issues for so long, we become very in tune with our bodies. As PKD patients, we learn what kidney pain feels like, if we are having a cyst bleed or need to go to the emergency room. It is important to listen to our bodies and know when we need to see our doctor or go to the hospital. For transplant recipients these decisions can mean life or death.
My neurologist recently informed me that the common triggers for seizures are low magnesium, lack of sleep and stress. At my last appointment, my doctor asked if I felt stressed. I chuckled inside because when you are a patient, especially with multiple health issues, stress seems to be a natural part of your journey. I believe this applies to everyone in life. However, we have the power to make choices to limit some of our stress, and also give ourselves moments of relaxation and reprieve from the weight on our shoulders and worry on our minds. Balancing the stress, is an important part of our journey as we strive to live as positively and healthily as possible.
Before Noah and I moved from Pennsylvania to California in May of 2010, he asked my dad for my hand in marriage. My father said yes, but was honest with him and cautioned him that our future together may not be easy because of my health. I recently found out that Noah’s mother had the same conversation with him. I appreciate our parents being open with Noah because I, too, had this talk with him. Noah was well aware of the potential of our future, was fully committed and asked me to marry him. We celebrated our five-year wedding anniversary on September 17th.
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.