Joe’s and my journey began with the military health system in 2004, and we transferred his care to the Department of Veterans Affairs in 2011, when Joe was medically retired from the Army. The care they provided gave us 13 wonderful years together. The system mostly worked for us, but it wasn’t always easy.
Let me back up, though, and tell you a little bit about Joseph. I called him Joe. We met in 2002 in the Wal-Mart parking lot in Fayetteville, North Carolina. I was 18 and a senior in high school, and Joe, at 22, had been in the Army for about four years. We were just crazy about each other. He proposed my junior year of college and we got married. Joe was funny and loyal and he loved his family. He worked part-time at a residential group home for troubled teens to make extra money to help his mother and little brother. He managed to acquire his bachelor’s degree in sociology while he was still on active duty, and his master’s degree in clinical social work after he retired. He was my hero.
After months of night sweats, he had begun to develop swollen lymph nodes in his neck. One day during physical training with his unit, he passed out and was admitted into the hospital on Fort Bragg. The diagnosis: Non-Hodgkin’s lymphoma, stage IV. Sitting in our bedroom later that evening crying, I told him we were not going to live with cancer. We were going to make cancer live with us.
Joe’s weekly routine consisted of one day of chemo and spending the next several days nauseous, weak, and barely able to eat. He received great care, including experimental treatments that private insurance might have denied. That allowed Joe to travel the world, acquire education, and live a life as close to normal as our circumstances would permit.
As my husband’s sole caregiver, I had to figure out a way to go to school full-time, work, and also get him back and forth to appointments at a civilian hospital 1.5 hours away. I had to be his biggest advocate during lengthy hospital stays. And I had to figure out how to get Joe’s medical records to and from his providers so the military and civilian doctors knew what each other were doing. This continued after he was medically retired in 2011 and transferred to VA care.
We would load up the car with these massive files and bring a cart to get them from the parking lot to the hospital. We were often unable to get the files to the provider until the day of Joe’s appointment due to the long drive. Since the care team could not review Joe’s records in advance, we had to become historians condensing and relaying years of medical history during appointments. Joe’s records were so massive that important information would be lost. He’d be given wrong meds or orders for procedures that he could not complete due to having a defibrillator implanted in his chest.
We quickly learned that if we wanted to ensure things were done right, we needed to inspect his medication, and every doctor’s order. Then there was the issue of duplicate procedures. Blood work, X-rays, and other procedures done outside had to be repeated at VA. Essentially, we had to become the administrators of Joe’s care, taking away precious time from focusing on his health and our lives and more time on administrative tasks.
Because of our experience, I leaped at the opportunity to support the electronic health record (EHR) modernization programs underway at VA and the Department of Defense (DoD), which will ensure a lifetime of seamless care for service members, veterans and their caregivers. They have the opportunity to eliminate paper records; to streamline transfer of important health information between medical facilities; to drastically reduce the risk of medical or patient error due to info lost in transit from one facility to the other; to increase physicians’ ability to adequately review patient history and improve the care experience for their patients.
Our story isn’t unique. Veterans and their caregivers are living this problem today. These modernization programs will save and improve countless lives. To me and those who share a similar story, these programs are about much more than technology, they offer us hope. On Veterans Day, I am especially grateful for the work to create seamless electronic health records so that current and future veterans and their caregivers have that much less to worry about and the dedicated care teams at DoD and VA will have the right information, at the right place, at the right time to improve health outcomes. We owe it to veterans and their families to provide the very best care available, and I believe these programs are a big step in the right direction.
I encourage everyone receiving military and VA care to learn about the new system as it moves from the Pacific Northwest to worldwide deployment in the coming years.
Lori Ward, veteran caregiver and advocate.