A caregiver’s perspective

Valen’s husband, Noah, offers insight into what it’s like to be a caregiver to a PKD patient.

Noah & Valen at Sac WalkI sat with my face in my hands as the fifth person tried to start an IV in Valen’s delicate veins. She was trembling vigorously, staring at the ceiling; her tired eyes were red and glassy. She winced as the needle pierced her skin for the eleventh time; tears again welled up. We had been at the hospital for several hours at this point and we were both exhausted, neither of us had much left to give. This had to work. I waited with baited breath and finally heard the words I had been waiting for, “I can taste the saline!” Valen exclaimed. A wave of relief came across me and my eyes welled up with tears, the IV was a success.

Unsung Heroes

caregiver_dad“Mom, my head hurts!” As a 5-year-old, I stood in the kitchen repeating those four words several times, each time louder, until I fell to the floor and had my first grand mal seizure. This is the day I became a patient and my parents became caregivers. Neither role is easy.

November is National Family Caregivers Month and today I am recognizing the three caregivers that have helped me become the strong, positive PKD patient I am today.

The reSEARCH for a cure

On our PKD journey, patients and researchers search for many answers, all with the common goal of discovering a cure. We patients may search to find out why we have this disease, what we can do to lead the healthiest lives, where we can obtain the best care or when we will see the day a treatment is available for us. PKD researchers search tirelessly to learn every facet of polycystic kidney disease and discover the long-awaited key that will unlock finding a treatment or cure.

grandmother who passed from PKD

Valen’s grandmother passed away from PKD.

Halloween candy: everything in moderation

halloween-candyTrick-or-treating is in full effect! Our homes, offices and bellies are likely full of candy, and it is only the beginning. When I worked at an office job, I was in awe of the amount of candy and baked goods that flooded our office this time of year. My bosses would receive gift baskets with candy, baked goods, toffee, chocolates and cookies. I was responsible for opening each package; showing the gift to my bosses; and with their permission, placing most of the items on a common table for the staff to enjoy. At times it was a huge tease, as the treats were in front of me every day, but I quickly learned the importance of refraining from nibbling on everything in sight. What amazed me was the short time-frame in which it took the staff to devour the treats.

Achieving Goals

goal diggerI believe setting and achieving goals is important for all of us, especially while enduring health issues. Instead of having a to-do list for every new day, I like to view it as a goal list. Every evening, I think of what I would like to accomplish the following day. If I look at the items as tasks, they seem daunting; but if I approach them as goals, I feel satisfied once they are completed. This simple change in perspective can make a big difference. Day-to-day objectives can be as simple as cleaning the house, going to doctor appointments or running errands. Then there are the longer-term goals.

Overcoming Setbacks

There are things we can try to plan for in life, both as regular folks and as PKD patients. These can range from saving money to purchase a home, to preparing for dialysis and transplantation. Then there are moments that just happen; the times that are out of our control. We can plan all we want, but setbacks become a reality, like cyst bleeds and episodes of debilitating pain. Setbacks are difficult because they are unwanted, unexpected and difficult to prepare for.

Finding Your Vortex

Mom and I on each side of Airport vortex-first picAs my mom and I stood separately on each side of the Airport Vortex in Sedona, Arizona, the view was powerful yet calming. A vortex is a site where spiritual energy is concentrated – a globally recognized power spot. It is usually on or near an interesting rock formation, where people have reported feeling inspired by a beneficial source of energy. There are only a few of these locations, including Stonehenge, the Great Pyramid, Machu Picchu and Sedona. There are multiple vortexes in Sedona and each one has a stunning view. We were surrounded with vibrant red rocks, love and fresh air. I could not have asked for more.

Health and Information Overload

InformationOverload2For some of us, PKD is not our only health issue. In addition to living with PKD and being a kidney transplant recipient, I have epilepsy and serious back issues. I did not have any health hiccups last month, but even during a quiet month I have routine health responsibilities. This is what September was like for me:

  • I had two check-ups at my family doctor’s office.
  • I went to therapeutic Pilates twice a week.
  • I heated and stretched my legs and heated and iced my back daily for my back problems.

Facing Fatigue

Soaking in the dayI’m a go-getter. I like to soak in and accomplish as much as I can each day. My body does not always allow me to do what my mind wants or thinks it can do. When living with chronic health issues like PKD, fatigue can become a part of our lives. When both of my kidneys were removed, I was on daily dialysis and hospitalized for many months; brushing my teeth was a huge accomplishment for the day.

PKD Messenger

On PKD Awareness Day, Sept. 4, 2015, my family and I used window markers and excitedly decorated our car in a parking lot in Arizona. Our messages ranged from “PKD Awareness Day, PKD Patient Inside” to “PKD Will Not Beat Me.” As we adorned our car for the occasion, someone passing by asked us what PKD stands for. We were all happy to be asked this question and quickly responded that it stands for polycystic kidney disease and proceeded to tell her what we were doing, and why.

Car windows     pkd-messenger3