The caregiver chronicles: It's always something

Tom's doctor told him he knew he would make it when he stepped into the hospital room during his rounds and saw him shaving, just a day after he was moved from ICU.

"What a relief," I thought when Tom shared the news with me. "So, maybe he'll get through this, even though they hadn't been able to remove all the cancer."

But the harsh reality of our situation set in when one of the nurses at the pod told me, "We didn't think we would see him again." My heart skipped a beat and I realized how lucky I was to still have Tom with me.

He'd made it through the first challenge, but there would be plenty more in the next 2½ years. Another piece of great news was that Tom's urologist and surgeon, recommended he see Eric Jonasch, M.D., in the Genitourinary Clinic at MD Anderson, for the next course of action.

The next hurdle

Once Tom was home, my mission was to get his records from the referring hospital to MD Anderson. Tom's journal on Sept. 28 says, "Hurry up records to MD Anderson." That wasn't so easy.

My notes from that period express frustration that someone in medical records at the first hospital was holding things up. On one hand, Tom needed to heal from the excruciating surgery, but he had an aggressive form of cancer -- a ticking time bomb, if you will -- that warranted immediate attention.

I did my level best to get his information to the institution that carries the mission of Making Cancer History®.

My temperament was at the boiling point, when five days later on Oct. 4, 2004, Tom's records still hadn't reached Susan, the MD Anderson liaison. She was as perplexed as I that they hadn't arrived. She reiterated the required laundry list: all diagnostic tests, pathology reports, patient history and a discharge summary.

Thankfully, the slides arrived the next day, but since nothing else had, I paid a visit to the referring hospital to pick them up in person. Unfortunately, I was advised that since I wasn't the patient, I couldn't take possession of them. Another cause for frustration that day appears in my journal entry, "Three weeks since Hairston contacted MD Anderson on Tom's behalf, and still no appointment!!!!"

A couple more days, void of progress and peppered with frustrating phone calls, passed before Tom's records made it to his next care team. On Oct. 8, 2004, my journal entry says, "Got an appointment Nov. 9 at 10:30 a.m., with Dr. Eric Jonasch. Finally! Yea!"

Some progress being made

Six years later, progress has been made at MD Anderson and other institutions with the development of the electronic medical record or EMR. This system allows referring physicians an opportunity to view patients' records, although it doesn't necessarily make it easier to get the records released from the hospital of origin or get a quicker appointment.

As you can imagine, any wait seems too long when a loved one's life lies in the balance.

Angels in the wings

During your journey, I hope you encounter someone like Laura James, now retired from MD Anderson's Health Information Management group, in the handling of patient medical records. I was lucky to meet James during the taping of a video about employees celebrating 40 years with MD Anderson.

Although James didn't have direct patient or family contact, she always kept her mother in mind throughout her workday.

"I think of my mother being in the hospital," James says. "I would want all her information on the right patient chart, and I wouldn't want any problems."

We can all hope to have a Laura James looking out for our best interests. After all, there are plenty of other things patients and their caregivers must deal with in this curious game called life.