#TellUsAnything: Lupus can kill

#TellUsAnything: Lupus can kill

I just read Brandi’s story and I’m so glad I did. I have lupus. I am an adult female, and I am on prednisone much of the time. I go back and forth with additional “chemo” drugs for lupus, like imuran etc. I have a brother with MRSA who lives in a nursing home.

He weighs about 450 lbs and frequently is hospitalized for cellulitis or pneumonia. He was recently at death’s door with sepsis. It was so bad that he was in a coma.

He is quite demanding, I have been dogged by him so often to come visit him or be with him when he is hospitalized. Others in my family (healthy) think I am being too cautious when I say I don’t want to anymore. The reasons are plenty.

First, he is rarely MRSA-free. He is on Vancomycin through a pic line about every other month. Even so, his nursing home never has an iso cart by his door, so no one can wear a gown, mask, or gloves When visiting. I have been told by my doctor that I HAVE to protect myself. The staff at the home is very rude to me when I have asked for such items.”What for?” they ask, snidely.

In the hospital, it is hit and miss. One time, the nursing staff has a sign on his door, an iso cart, and is very explicit that NO ONE enter without protection. Other times, the staff can be very cavalier about it, saying, “Oh, we don’t use all of that, most of us are colonized anyway.” Well, what about the other patients they are going to go see who are not well, and AREN’T colonized and don’t want to be!

No wonder MRSA is called the Super Bug, the Killer Bug. I have seen such an enormous amount of ambivalence, ignorance and downright dangerous attitudes and treatments, both in hospitals and nursing homes. Needless to say, my brother thinks I am a terrible sister, doesn’t understand, and tells me the staff thinks his family is wrong about our “information.” This, coming from a man who has had positive MRSA nose cultures, oozing sores on his body that never heal, and cellulitis because of the MRSA.

I am so sad for Brandi’s parents, I read the story in the Lupus Can Kill category. But I am going to print it out and send it to my brother and the staff at his nursing home. Maybe with better education, others won’t have to suffer.

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