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The Caregiver Chronicles: It's Always Something

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Black and White Hurdles David MorrisAfter a long and successful career in broadcast journalism in Houston, North Texas and Oklahoma, Judy Overton joined MD Anderson in 2008 as a senior communications specialist. Her husband, Tom, was treated at MD Anderson for renal cancer. He died in April 2007. Judy's occasional posts will cover aspects of the cancer experience from the caregiver's perspective.
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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 John Hairston, M.D., Tom's urologist and surgeon, recommended he see Eric Jonasch, M.D., assistant professor 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 the institution.

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.

Photo By: David Morris CC  

1 Comment

Being a caregiver is scary..I have a good one of a similar type.
When my wife was first diagnosed with GBM, she had emergency surgery at our local hospital.
The surgeon comes in with a starbucks coffee cup and my wifes blood splashed on the bottom part of the pants on his right leg.
All I could do was stare at her blood on his pants.
He told us that he had "cut all the bad stuff down to where he got to good stuff, then stopped"
We asked him if there was anywhere that we could go where she would have the best chance at survival.
He said "No, we'll just get an oncologist right here, she'll get the same treatment wherever she goes"
From a co-worker of mine here at work who had, had Cat3 astrocytoma and who'd come to MD Anderson we got the right information and guidance.
When my sister told the doctor that we wanted a referral to MDA, he was not really enthused..
I came back into my wifes room a day or so later after taking a walk and my wife was sitting up in bed, staples from ear to ear and smiling as she told me,,the doctor was just here checking me out..
He told me to "let that girl who wanted to refer you to MD Anderson, do it herself"...
and so we learned the real fast that you, the caregiver are responsible for getting your loved one to where they need to go!!!
Before, I was a caregiver, I thought that certain maladies, were automatically sent to the places where they can best be treated.
That IS NOT the case!
The role of the caregiver is PRIMARY and DECISIVE.
The immediate spouse as I was, may be just a blubbering, quivering crying wreck..
But have someone with you throughout the care-giving process who is clear headed and can make decisions.
Knowing what I know now, I don't blame the guy at all!
He was trying to make his network money...
My wife was merely another statistic....
The caregiver has to insure, he/she is responsible that the loved one is more than "another bleeder"

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