The wife of our friend who has lupus and young children just had a lung biopsy. One lung seems to be diseased though the other is fine.
During the procedure, she coded, spent 24 hours on a ventilator and three days in ICU. Not a fun time. She phoned to let me know that it has not been confirmed that she has an ILD. They can’t put a name to what is causing her one lung to fail. The biopsy was sent to my hospital for help with the diagnosis.
After hearing about a connection between connective tissue diseases and ILDs at the last ILD meeting, I thought there might be a connection with her lung issues and her lupus. The problem is, it is only in one lung and if it were connected to the lupus, it would be in both lungs.
So she waits. Doctors don’t want to treat it until they have a proper diagnosis.
She is in bed over 23 hours a day. She only gets up to take her cocktail of pain medications. Each day, she is losing muscle mass and it is growing harder to even walk to the bathroom. She is extremely out of breath. Her husband says that she is only coherent a short period of time during the day. The rest of the time she is in a drug blur.
Her body is breaking down. It is so depleted due to the long-term lupus and gastro problems that I hope she is strong enough to survive a lung disease on top of it all. There is talk of removing the one diseased lung. I am not sure she would survive the surgery. Such a young woman with so much to live for. So very sad.
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