A Lupus Widower Laments to Friends

By Mr. D.R.
Medical Editor: William C. Shiel Jr., MD, FACP, FACR

So many people have had comments like, "I had no idea Susan was so sick." That was because Susan did not want anybody to know.

Because lupus is such a crafty disease and flies under the general public's radar, this is a good opportunity to clear things up.

Lupus is an autoimmune disease, not an infectious disease like HIV. People with lupus have an overactive immune system. The body's defenses actually attack healthy tissue. This has been happening to Susan for 30 years or more.

She was diagnosed around 1990, but she had symptoms way before then. Originally, the disease would manifest itself as flu-like symptoms for about three weeks out of every three months, with fatigue extending a month after every flare-up.

In 2000, lupus attacked her central nervous system and involved her brain. The original result of this new development was pain. From late in January 2000 until the day before she died, she was in pain. On the scale of 1 to 10, there was no day that she didn't feel pain on an 8 to 10 level. (With 10 being all-encompassing.)

Lupus attacked her lungs, causing shortness of breath, sleeping problems, and more pain in the form of pleurisy. In addition to Hashimoto's thyroiditis (causing cold extremities) and Sjogren's syndrome (extremely dry eyes) and a few more isms that I have forgotten, life was getting difficult.

Around 2003, it was emerging that her brain was more affected by the central nervous system lupus. As much as they tried, there was nothing that her doctors could do about this. Motor coordination, balance, and some cognitive skills were diminishing. It was at that time she decided to retire from teaching college and we planned to change our lifestyle.

Her condition continued to worsen, and about two years ago, we decided that a lifestyle change was not to be and we vowed to just have fun every day. Also, it was time to tell our children that lupus was slowly killing Susan.

Shortly afterward, she gave me permission to mildly explain her condition to a few friends. Some of you may recall those discussions.

Earlier this year, we took her to the hospital. It was her ninth visit in less than four years. She was diagnosed with meningitis. It was the bacterial kind caused by listeriosis bacteria—a nasty bug, one of the doctors told me. Her condition at the time was described as grave. After a week, she was showing improvement, and 11 days after admission, the doctors took the breathing tube out. When I could go in and see her, I was excited to see her face without the tape and tubes, and I told her that I missed that face. To my surprise, she looked up and said, "I miss you, too." Those were her last words to me.

While I imagined another week in the hospital and then a return home, the doctors cautioned me to think months and years for recovery and then never a full recovery.

Two days later, she experienced convulsions and got bile into her lungs. She was without oxygen for an unspecified amount of time. The tube was back in, and her brain test was showing abnormal brain activity. She had internal bleeding and would need an operation to correct it. Shortly after, she had two strokes that would require brain surgery.

One doctor took me aside and explained that the Susan I saw in bed at that moment was all the Susan I was ever likely to get. And the pain seemed to get worse for her. Nearly four weeks after admission, we put her on comfort medication and removed most of her tubes. What the doctors thought might take 20 minutes ended up taking 20 days. As the days wore on, Susan became more and more beautiful. The steroids wore off and her face looked as it did so long ago. The bruises from the tape healed and she looked as if she was 30.

A month and a half after admission, she quietly slipped away at about 10:15 in the morning, with her daughter, son, and me at her side.