Tuesday, July 28, 2009

Treatment began with putting in a permacath...for her dialysis port, and dialysis was started. She also started high doses of Prednisone and oral Cytoxan over the next few days the rashes started to improve however her breathing became more difficult, a bronchoscopy was done and confirmed Vasculitis had hit one lung and it was filling with blood. She was already in critical condition and this just made it worse. Plasma exchange treatments were started and she had 8 of those over time. She was moved to ICU after 21 days in the hospital as she continued to worsen with the lung involvement, they felt she may need to be on a vent. But the Bi pap machine proved to be enough and she tolerated it well 24/7. She was in ICU for 8 days and those were some of the few days I didn't sleep right there with her as staff was watching her around the clock. She was also started on the experimental drug called Rutuximab and the Cytoxan was switched to the IV infusion and finally the disease stopped progressing...it was then a matter of time for her body to reabsorb the blood from the lung hemorrhaging. I forgot to mention that she was unable to eat from the time she entered the hospital and for 2 weeks had nothing, then they encouraged eating as the stomach pain became less intense but she was only able to eat tiny amounts equaling 150 - 200 calories a day!!! So she had no real nourshiment until the feeding tube went in on day 21. There were issues with that as well so for 50 days she had very little nourishment and in the month an a half she was there she lost 40 lbs.

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