Health Care Reform: My Number One Issue – A Follow Up

originally posted at Daily Kos Sat Mar 27, 2010

It’s been about 15 months since I wrote Health Care Reform: My Number One Issue, and I have many times thought, “just a little while longer and I will write the epilogue to that story”. Today, I am still not writing the epilogue, because the story still isn’t over. Back then, I didn’t feel comfortable telling the details of what had happened to her, because I didn’t have her permission, and she was really in no condition to give it.

She gave me that permission later, and I thought, “When I write the last chapter of the story…”. I don’t know when I will write that last chapter now, but I know I have more I need to say, and the details will make that “more” clearer, I think. Barbara’s colon ruptured during Hurricane Ike’s ravaging of the cities of Houston and Galveston. We didn’t lose family or friends in the storm, thank the gods and goddesses. Many of our friends lost many material possessions, and far too many lives were lost because people didn’t respect the power of that storm.

In the first hours after Ike hit, we lost power for nine hours. We knew people who didn’t get their power back for weeks, but we were “lucky”. We had registered as special need. Barbara has lupus, and her lungs were already damaged by that disease. She was on 24/7 oxygen support, so we needed our power back ASAP. When our power was back, and the storm was passed, we contacted our friends and checked in. Several of the hardest hit came to our home with frozen foods to salvage or cook. We had A/C, so the older friends who didn’t tolerate summer heat well could escape it.

We had a party by Sunday evening. Because Barbara was on various anti-inflammatory and pain medications, she had no idea of the danger brewing within her. It would be late Monday evening before she noticed that her abdomen was hurting, but she wrote it off to the long term irritable bowel issues that came with her lupus. The next morning, though, was a different story.

The pain was unbearable. She didn’t want to try to find a doctor. 95% of Houston was still without power, and most of the ER’s were on drive by because they were on emergency power at best. I convinced her to at least call a nurse and get a recommendation. Her doctor’s office wasn’t open. Next idea was to call the insurance company’s “Nurse Referral” line. To their credit, BC/BS nurse heard the symptoms, and said “Get thee to nearest ER.” The nearest ER, though, was not in the PPO plan. Still, I called and found out that they were open, and off we went.

We arrived at that ER at 10:30 am. Triage put her low on the totem pole. Her lupus treatment was still preventing much of the normal symptoms from presenting. She had no fever or even elevated white blood cell count. So for 12 hours, no one realized Barbara was dying of sepsis. They wrote her off as a drug seeking addict. Oh, they never said those words, but that doesn’t change that reality.

Finally, they agreed to x-ray her abdomen. Within a half hour, we got the word. As soon as they could arrange it, she would be going in for emergency surgery to “find the hole in her intestines.” At 12:15 am, they took her to pre-op and started her sedation. Luckily, in the interim, I knew enough to summon a hospital social worker and get a medical power of attorney while she was still able to sign one. She’s my fiancée, not my wife. Without that, I wouldn’t have been able to make medical decisions for her.

About 1:30 am the surgeon came and told me that the surgery was over. She was very ill, and it would be touch and go for a while. He estimated that her colon had ruptured 3 – 4 days prior, based on the condition of her abdomen. She lost 14 inches of transverse colon in that initial procedure. About 8 hours later, I got the first status from the critical care doctor assigned to her case. He didn’t realize it when he started talking to me, but her middle daughter was behind him. He had walked up between us.

He looked at me, gave me the update on her condition, and very quietly (he thought) told me that she would not survive beyond the end of the day, and that any family who might want to say goodbye needed to be contacted immediately. Over his shoulder, I saw her daughter react and knew she had heard that. I told him thank you, and then “You don’t know this lady, or her support system. I will call the family, but she will surprise you.”

Many more events and conversations occurred over the next 28 days that she was in the ICU of that (non-PPO) hospital before she was strong enough to be transferred somewhere else. The insurance was pushing for the entire last week she was there to move her to an LTAC in order to reduce their costs of her care. The doctors and I fought as long as we could. Finally, we could fight it no longer.

There’s more to the story, but here’s some data from that experience. Her insurance company paid their usual and customary to that hospital for her 28 day stay. At the time, she had a lifetime maximum of $1 million. As of the end of February 2010, they have paid $400,000 for her care. The annual maximum is now $2 million. The unpaid portion of that one hospital bill was $750,000.

She never healed correctly. This past Thursday, Barbara had major abdominal surgery, again, to repair what didn’t heal, and the new damage therefrom. She’s in the ICU again. She has post surgical pneumonia. This time it is a PPO hospital. I’m frightened again about how I will pay her monthly insurance premium and still be able to concentrate on her needs.

She’s in the state risk pool in Texas. Her monthly premium is currently $1022. It goes up every six months without fail. Soon it will exceed my suburban rent. My income isn’t making it. It hasn’t for several months. BTW: That provision that outlaws lifetime maximums in the recent Health Care Reform bill? It may only apply to private insurance providers. She may still face hitting that at some point. And her share of the costs in a PPO hospital? Only 20%. It was 40% in the non-PPO hospital. That means more is being covered this time, and we are that much closer to lifetime maximum, if it still applies.

I predict a medical bankruptcy in our future. I wonder what the hospital would do if I missed a payment and her insurance lapsed? Or should I let utilities lapse first, then rent? But homelessness wouldn’t be too good a way for her to recover either.

Epilogue? I wonder if there ever will be an epilogue that I am capable of writing. I will close by quoting the last paragraph of that first diary so long ago:

So long as the word “insurance” is part of the national health care discourse, so long as the profit motive is more important than the Hippocratic Oath, we will never get to where we as a nation must ultimately go. Health care reform begins with removing that word from the conversation. How do we do that? By enacting HR 676 as soon as possible.