This is Leslie…thanks for logging on. I have SO many questions! Are you back to your normal life – energy level – are you in remission.
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Right now she is being treated with rituxan and steroids. This may change after the kidney biopsy. A major concern right now is the low hemoglobin count. It has improved with transfusions, iron infusions, and the treatment mentioned though.
A diagnosis at last…. It has been determined that my wife has Micro Polyangiitis (MPA)/ANCA Vasculitis. It has done extensive damage to her kidneys and dialysis and an eventual transplant are indicated. Some damage to nerves, lungs, and heart area (not the heart itself) occurred. Hemoglobin has also been negatively affected. She is hospitalized and undergoing treatment. Chemotherapy will likely start today or tomorrow.
No treatments. I still can’t tolerate solid food and am very weak and confined to bed. Weight loss stopped at 15 lbs. I can make it to the bathroom myself. Terrible indigestion most of the time. She (Dr) suggests i consider a rehab/nursing home facility for recovery, but my husband is taking very good care of me at home.
Thank you for sharing your journey, your insights and your observations. We are optimistic by nature and are adept at adjusting to new circumstances. Right now we have good days and bad days, with the latter prevailing 4/1. Indigestion (stomach burn) subdues her appetite, sometimes to 0. Liquid calorie intake every other day is 700-1400 per day…no solids. The weakness is hard for her to take (4 months ago we hiked Canyon de Chelly top to bottom and back, and three months ago she was a hyper-charged AP teacher and ACADEC coach). Keeping her spirits up is a challenge, but I am good at pep talks. Thanks for the reading suggestions. I will order right away.
At this point, the best the doctors can come up with is that my wife is suffering from ‘serum sickness’. It was immediately after taking the flu and pneumonia shots on 16 September that her immune system ‘blew up’ and began attacking her body, so it is hard to argue with that opinion. Essentially, we are left with the sole option of treating the many manifestations of AI,and hoping that with rest and nutrition, the immune system will calm over time. The continuing indigestion and nausea and periodic daily low grade temperature spikes are a barrier to achieving that goal, but fight on we will.