First Line of Defense: WVU Healthcare, Football, and Patient Advocacy

People say you should never leave someone you love alone in a hospital. And doctors write books about the need for patients to be their own best advocates. Yesterday I learned exactly why both thoughts are crucial. I’m pondering it as WVU plays its final home game today because ironically, football is a factor in our case.

I’ll get to that shortly. In the meantime, it’s been a roller-coaster kind of week. It began with my husband’s stoke and ended with the hospital trying to discharge him last night. Against, it seemed to me, all logical medical advice.

Discharge him even though doctors have repeatedly told they didn’t want to wait one day longer than they had to, to perform either a carotid endarterectomy or a stent procedure. Because they said Butch could have a major stroke at any time—and the longer they waited, the more likely it was to happen.

I should point out, their care has be Dr. Vince Miele en excellent. Their concern struck home with Butch when I asked, point blank, Thursday at 4 p.m. “I think what you’re saying is that both procedures are risky, but if you send him home he could have a major stroke. Is that right?” The doctor took only a second to reply. “Yes,” she said.

Which is why it came as a big shock when, just 16 hours later, we learned he was being discharged. Nothing had changed. He still had residual stroke symptoms; his glucose levels remain largely in the 200-range. His left carotid, responsible for the minor stroke he sustained Monday, was still 60-percent blocked and badly ulcerated. (One doctor said it looks “like a hot mess.”) And by day’s end, thanks to the stress of a potential discharge, his blood pressure reached 170/101.

We were told that everyone here at Ruby Memorial Hospital (part of the WVU Healthcare system) works together and while the medical staff may believe a procedure is necessary, the pencil pushers have a say, too. Which is when we thought we discovered the true nature of the problem—money.

Welcome to the world of the uninsured, of which I’ve been a member most of my adult life. So has Butch. A self-employed small business owner, he couldn’t afford health insurance. So when his first wife, Shirley, was diagnosed with the breast cancer that eventually killed her, they spent hundreds of thousands of dollars for her care. Ditto for his heart condition and diabetes, which began in his early forties.

Maybe one reason Butch couldn’t afford health care is because he was too busy being so generous to other people—his family, friends, employees and even his colleagues. For instance, from 1980 until 2005, he had season tickets to WVU football games. He bought 20 tickets and got preferential seating in the second level of the stadium. Butch says he and Shirley watched John Denver sing Country Roads in the new stadium after it was built.

I went to a few games with Butch after we married, and we sat six rows up, on the 35-yard line. These were not the cheap seats, for they came with an “in-kind” gift that amounted to an estimated $2,700 a season. Butch’s relatives and friends paid him for their tickets, but for years he picked up the tab for the donation WVU required. Until he could no longer afford to do so, and gave up his beloved season tickets.

He dissolved his company in 2007, yet the last time we inquired about health insurance, the monthly premium was going to be $2,000—thanks to pre-existing conditions. Now, because of the Patient Protection and Affordable Care Act, that’s no longer a factor. But the resultant insurance changes aren’t easy to understand. I don’t think we quite knew what to do to get insurance, in a post-Obamacare world.

So last night, discharge papers in place, a resident explained all the reasons Butch was being sent home. He used phrases like “the American system,” “exchange money for services,” “team effort, including (the business folks),” and so forth. My mom, a family friend, Butch, and I all heard the same thing: this is about not having insurance. “So it’s all about the money,” one of us said. “No,” he replied. And almost in perfect concert, four voices replied, “Yes it is, you just said so.”

The decision to discharge was being made by the doctors, but it sounded like that call came from someone in accounting. Basically leaving the doctors little choice. But I had questions—which ultimately helped lead to the discharge being rescinded. That’s when we learned the advocate had been working on our case. As a result, Butch began taking Plavix last night, and will remain here through the weekend.

Today his neurologist says the problem isn’t the money—it’s confusion since so many doctors are involved. Essentially she said it’s a miscommunication problem. As a result, she offered a Monday meeting here with the lead doctors from cardiology, neurology and neurosurgery. So we can all agree on the best course of treatment. That’s something we really, really appreciate. (Knowing their busy schedules, I just hope it happens.)

This lesson teaches me once again why advocating for yourself (or your loved one) is crucial in today’s world. Especially in today’s world of modern medicine. Because make no mistake about it, medicine is a business. That’s why patient advocates exist. So if anyone sees our advocate, Holly Ainsley today, please give her a big hug for me. We haven’t met yet. But we will, and then I’ll give her one in person.

Oh and if you see Geno Smith or Tavon Austin, tell them one of their biggest fans is in Room 954. Where, barring anything else going wrong today, he’ll be cheering, “Let’s Go Mountaineers!”

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Daleen can be reached at daleen.berry@gmail.com.

Editor’s note: Berry is the first recipient of the Pearl Buck Award in Writing for Social Change, for her second book, Lethal Silence, to be published sometime in 2012. Berry speaks about overcoming abuse through awareness, empowerment and goal attainment at conferences around the country.

Her memoir (paperback and as an e-book) can be found at bookstores everywhere, or ordered online. To read the first chapter free, please go to Goodreads. Check out the five-star review from ForeWord Reviews. Or find out why Kirkus Reviews called Berry “an engaging writer, her style fluid and easy to read, with welcome touches of humor and sustained tension throughout.” To read her award-winning memoir, Sister of Silence, in e-book format (or any other e-book), download a free app from Amazon for your phone, tablet or computer.

Her memoir (paperback and as an e-book) can be found at bookstores everywhere, or ordered online. To read the first chapter free, please go to Goodreads. Check out the five-star review from ForeWord Reviews. Or find out why Kirkus Reviews called Berry “an engaging writer, her style fluid and easy to read, with welcome touches of humor and sustained tension throughout.” To read her award-winning memoir, Sister of Silence, in e-book format (or any other e-book), download a free app from Amazon for your phone, tablet or computer.

If you want to read more than 100 reviews, go to free app from Amazon for your phone, tablet or computer.

To view the Sister of Silence book trailer, go to her VintageBerryWine Youtube channel.