Lupus, Post-polio Syndrome, or Malpractice - Which Really Killed My Sister?

My sister had a lot of vague and indefinite complaints for years-in fact during most of the time her three children were growing up. She went from doctor to doctor and not one of them was able to help her.

I can't even remember what all her complaints were, but I do remember her having horrible itching all over part of the time. I always thought it was either stress and nerves, or allergy to some medication. And it might well have been. Medications almost always affected her exactly opposite of what it was intended to, and she had many strange reactions to them.

She had trouble swallowing, and would often cry and beg someone to beat her on the back. She choked frequently as well.

The doctor she was seeing at the time thought she was a hypochondriac trying to get attention. Finally he told her she needed to see another kind of doctor, and called in the mental health people. I'll never understand why she went along with it, as it wasn't her nature to give in to something like that. I soon learned that that doctor just plain did not like her and just wanted her off his hands. So he dumped her on mental health.

While I'm sure there are many competent mental health professionals in the world, it seems she never came in contact with any of them. One told her that the only way she would ever get better was to have an affair. Of course she didn't take that advice, but it certainly dampened any confidence she had in them.

They put her on various drugs, which had horrible side effects. She sat and looked at a spot on the wall for literally months. She saw frightening things and became terrified. She turned on the ones who had helped her the most. She had never done any of those things before taking the drugs the mental health people prescribed.

One day the woman who ran the mental health unit in our town called me up and said my sister needed to be committed to a mental health hospital farther north in our state. She said she was a danger to herself and others, and needed more treatment than the local unit was able to give. I asked why she had called me instead of her husband. She said her husband had promised my sister he would never have her committed. I told her the only way I would ever do it was if he called me himself and asked me to do it. He did that, and then when my sister confronted him about it he blamed it all on me. As I had expected.

At that time, it was almost impossible to keep a person confined in a mental hospital against their wishes, and by filing for release one could be turned out in a day or two. So she signed for release as soon as she arrived there, and then called me the next day to drive the 200 miles to pick her up.

The thing that bothered me about the whole situation was that I didn't think my sister ever needed mental treatment. I felt that the medications the mental health people were giving her were what was making her act crazy. My parents and I tried to get her to stop taking the medications, but she said the mental health people would "kick her out" if she quit taking the drugs. Her husband was irresponsible and never made a living for his family. When my sister became involved with the mental health system, she started receiving a small check. I think she hesitated to cut herself loose from the system because as long as she received a check, she could at least buy some food for her kids.

When she would complain of a physical problem at the mental health facility, most of the time she was sent to a mental facility in another town for a stay. Evidently they agreed with the medical doctor that her symptoms were all in her head. She never seemed to mind going to this place, but it took her away from her children for long periods of time. Her husband's brother and his wife, who lived near them, cared for her children more than she and her husband did.

At some point, "professionals" at the mental health department decided that my sister needed shock treatments. For the life of me I can't understand why. But she went through several of them. She explained to me that when you have a shock treatment, they first give you a drug that paralyzes you, then one that puts you to sleep, and then they shock you.

The last time she had a shock treatment, the paralyzing drug worked, but the one that was supposed to put her to sleep didn't. Apparently no one bothered to check to see if she was unconscious, and with her paralyzed and unable to tell them she was still conscious, they shocked her anyway. She said it was unbelievably painful. And of course it never did any good. I will always believe the shock treatments and drugs given by the mental health people caused unnecessary injury to my sister.

Meanwhile, she completely lost the ability to swallow. She had changed medical doctors by that time, and her doctor sent her to a surgeon who put a feeding tube in her stomach. She was never able to eat again after that, but liquid nourishment was injected into the tube. She used the stomach tube for a year or two, with constant infections causing additional problems.

Then tests were run to check the motility of her stomach. They showed that the stomach wasn't working as it should. So at this point a "j-tube" was put into her small intestine and she was hooked up to a pump that pumped liquid nourishment into her system 22 hours a day.

During all this time, no one was ever able to tell her what was causing her problems. Eventually someone mentioned "post-polio syndrome" and those involved agreed that was probably what she had. Strangely, she never knew of having polio, except that when she was about 15, she was very sick and the doctor told Mother it was "a virus." But he told a neighbor that he thought she had polio. In any case, after that she could never swallow right, and often choked. So it could have been polio. Or not.

At some point during that time, she divorced her husband and actually seemed to do better after that. She also made up her mind that, since it had been proved she wasn't imagining her ailments, she would find a way to get loose from the mental health people. Of course she was unable to work and would still need assistance, but she was determined to get her label changed from "mentally disabled" to "physically disabled." Eventually she was able to do so and disassociate herself with the mental health system, which was a great relief to us all.

Once she escaped from the mental health system, she seemed to do much better for awhile. But from time to time her "j tube" had to be removed and replaced, and she had many surgeries and stays in the hospital.

She was musically gifted, and derived great pleasure from playing the piano or keyboard with groups or for church meetings. She also became engaged to an old family friend who played the guitar and they had great times together, playing for various functions.

But she still had to wear the "j- tube" and eventually even her small intestine stopped working. She had been told that the disease would progress through her whole digestive tract and eventually take her life, but none of us wanted to believe that.

Then unexpectedly, she told her doctors that she had "had a miracle happen" and she could now eat. She insisted on having the tube removed and started eating, but something just didn't seem right. Where she had always been very thin, now she had a huge abdomen. She developed a mild but constant diarrhea and always seemed to feel terrible.

One day one of her friends loaded her up and took her to her doctor who admitted her to the hospital. She had four surgeries during the two months she was in the hospital, but all these years later, I can't recall what they all were. I do know the doctors said her digestive tract was still not working, and her colon had ruptured. She had peritonitis, her whole system was contaminated, and she was not likely to live. But they replaced the "j- tube" and hooked her up to a colostomy.

She surprised us all by appearing to rally. One of her doctors came out of her room one day and told me, "For the first time in 10 days, I think she might make it after all."

I had been at the hospital every day since she had been in the hospital, but after her rally I risked taking a couple of days off to take a short anniversary trip with my husband. When we returned home, there was a message on my answering machine to get back to the hospital as fast as I could. My sister was dying and begging me to come back.

We rushed back to the hospital, to find that she had started hemorrhaging from every pinprick, incision, and through her kidneys. There were 11 bags and bottles attached to her IV tube, with fresh blood running in and dark blood running out. They had done everything they knew to do, and the bleeding just wouldn't stop. After a day or two of this, I was told that her heart just refused to quit beating-that most people would have been dead at least two weeks earlier. Of course she never recognized me or anyone else once we reached the hospital.

When her heart finally beat its last, her two daughters and I were by her side. Six years later we would repeat the scenario as the three of us stood and watched my dad draw his last breath.

I won't go into the pain and grief that followed, but I had to feel my sister was so much better off, now that her suffering was ended.

A while after my sister passed away, one day I opened a book she had borrowed from me and returned shortly before her last hospital stay. In this book I found a note she had written, I suppose thinking I would read it immediately. In this note she talked about how tired she was of "living like a freak" with the burden of the "j-tube" and pump always with her, how tired she was of feeling bad, and how weary she was of having to deal with bill collectors who wanted her to pay the thousands of dollars worth of medical bills she owed and could not pay.

She said she was going to "get rid of her only link to sustenance" (the "j-tube") so she could get out of her misery. Shortly after writing the note, she told her doctors about her "miracle" and insisted on having the tube removed. Some way she was able to get some food down and it made it to the colon, but the colon had also quit working. As she ate food, it entered the colon from the top and some was pushed out the bottom, hence the diarrhea. Finally the colon could hold no more and ruptured. Whether or not she had thought that through, we'll never know. But I think not. Maybe she did experience a miracle that allowed to eat again, although doing so cost her life.

Her children were all grown by this time, and the younger daughter was completing her nurses training shortly afterwards. A few years later, she started having many of the same problems her mother had had. She was sent to a specialist who diagnosed her condition as lupus. She told him that her mother had had most of those symptoms, and he said she had probably had lupus as well. We had to wonder how things would have been if she had been diagnosed with lupus years before she died. But we'll never know.

Most stories have a moral, and the moral to this one is this: if you have ongoing problems that your doctor can't diagnose, don't give up. Find another doctor. Get online and research the symptoms. Talk about it to people who might have had some experience with similar things. Write down any symptoms and problems, and keep looking till you find the answers you need.

And most important, if they tell you it's all in your head, don't believe it. Maybe they're the ones with mental problems.