More Than Just Patients

As a patient, one must possess a multitude of skills. We become our own administrative assistant by scheduling our medical appointments and the phone calls, paperwork and documentation involved in coordinating our care. We fill the role of a medical biller as we decipher, pay and file our bills, and keep up-to-date on all of the details with our health insurance. Our daily regimen of medicine looks like a miniature pharmacy and we become our own pharmacy technician as we coordinate and order our medicine. Going to doctor appointments, getting blood work performed and taking the best care of ourselves consumes a lot of time. This is just a sliver of what patients must handle. No matter how consuming our health challenges may be, though, we are way more than just patients.

Our Endurance Run

1st person to cross finish lineBeing an athlete involves training, some natural-born talent, strength, stamina and an immense amount of determination, dedication and drive. Noah and I watched athleticism at its finest on the morning of June 28. We stood by the finish line of The Western States 100-Mile Endurance Run and watched in awe as runners crossed the finish line. This race is the world’s oldest and most prestigious 100-mile trail race, beginning in Squaw Valley, California and ending 100.2 miles later in Auburn, California. Since it began in 1974, it has evolved into one of the ultimate endurance tests in the world, as runners from all over the globe climb more than 18,000 feet and descend nearly 23,000 feet before reaching the finish line.

The Waiting Game

Blood workWhen your nephrologist calls you two hours after you get your monthly blood work drawn, you know something is wrong. This happened to me last week. When I answered the phone and heard my nephrologist’s voice, I instantly asked, “What is wrong?” Dr. Bhat said, “Hi, Valen. How are you feeling today?” Every thought vanished except the question I then asked, “Is my kidney OK?” Dr. Bhat said, “Yes, your kidney is great, but I need to know how you feel.” I felt my posture lighten, knowing my kidney was fine. My mind then began racing through the past couple of days to recall how I felt.

Cancer, Post-Transplant

It has been nearly 13 years since I was given the precious gift of life. When I received my kidney transplant I was not only given a second chance, but the responsibility to care for the special gem I carry inside me. I look at this responsibility as an honor. I’ve learned that the more educated and aware of our bodies we are, the better outcome we will have. I recently came across a very interesting tool that I believe will be extremely valuable for those of us with PKD.

A Family Disease

Mom and dad-1st paragraphWhen I think back to my PKD cyst bleed episodes in middle school and high school, I realize I did not talk to many people about what was happening to me. My parents, doctors and school nurse were the ones aware of my condition. If I were to talk on a personal level of what I was enduring, it would be with my parents. I don’t recall talking much to my closest friends about what I was going through. It seemed to be a separate part of my life. I did not know any other person battling PKD, except my family members.

Circle of Support

Noah's name tagSometimes what may seem like a simple gesture or action can prove to mean a whole lot to someone else. I had a ‘fall in love all over again moment’ with Noah last weekend. We attended a PKD support group meeting in Sacramento. I was standing with a few other people. We all had our names written on name tags. Noah approached our group and I immediately saw his name tag: “Noah Keefer, Wife w/ PKD/Transplant.” It warmed my heart to be visually reminded of his immense level of support of what I have endured and my desire to be actively involved in the PKD community and to help others. His name tag was letting everyone know his personal connection with the disease and his willingness to talk about it. Noah is an amazing advocate for the cause. Very knowledgeable of my health, enjoys helping to raise awareness and willing to talk to anyone about what I have gone through and what we endure as a couple. The other evening before we fell asleep, Noah said, “It is a privilege to take care of you.” I know I am the privileged one to have him by my side on this journey.

Give Yourself a Break

 

Nap-time - 1st paragraphIn preschool, we are given snacks and nap-time to refuel. In grade school, we have recess to burn off energy and help us focus. In high school, we are given breaks between class periods to talk, walk and clear our minds before the next class begins. With college comes semester breaks to rest and prepare for the next set of classes. In the corporate world, we earn vacation days and are allotted breaks throughout the day to clear our minds. There is a pattern in life that displays the vital need to take time for ourselves and let our body and mind rest and rejuvenate.

Learning As I Go

Mountain - 1st paragraphNobody likes a setback. I’ve learned that downtime gives us more time to think, which sometimes can be to our benefit and other times not. I find it interesting the thoughts that sporadically cross our minds. I had the thought the other day that I may never be able to run again. Not that this is a big deal for me, but the thought did cross my mind. When I see big open fields or mountains, I envision myself skipping around freely or wanting to climb to the summit. Those days may be gone. However, there are plenty of other things I can do and it is important for us to focus on those aspects in life.