My mom is 66, has never been on any medications, hasn't been in the hospital for over 40 years, and now can't seem to get out. The last two weeks of May, she wasn't feeling well at all. Went to the local hometown doctor, and he said she had bronchitis and gave her some antibiotics. She wasn't getting any better. Running a fever day after day, and all she wanted to do was sleep. She was having a difficult time breathing, and had lost her strength. On June 1, 2010, my dad took her to the ER in Columbia, MO. The ER docs told us she had pneumonia in both lungs, and x-rays show four different spots in her lungs. They scheduled a CT Scan. Day 2-Drs schedule a bronchosocpy for biopsy of spots on lungs. They are convinced that it is cancer. Still running a fever. Day 4-Results from biopsy, no cancer. Heart rate is excessive. Day 5-Moved her to ICU due to heart rate. Dr scheduled another biopsy. Her breathing was wearing her body out, so they sedated and intubated her. Another biopsy was done. Day 6-inserted a feeding tube, and started some type of steroid. Day 7-Drs say her kidneys are not functioning properly and needed dialysis. We were informed that the last biopsy resulted in dead tissue. Day 8-still sedated and still on respirator. Did dialysis again. Drs insisted on open lung surgery to get better tissue samples. Came out of surgery with chest tube. Day 9-Nurses stopped sedation at 8 a.m., and she was taken off the respirator by 11 a.m. Did dialysis again. Day 10-took out feeding tube, and put in Picc line. Day 11-Moved out of ICU. Breathing is good, heart rate is good, but blood pressure is bad. Drs say lungs are clearing up. They tell us they have never seen anything like this before, and as far as they can tell, there is no cancer, but was a bad infection from pneumonia. Day 12-starting to eat a little. Broke out into a rash. Day 13-Did surgery again to check heart valve to see why blood pressure is so high. Still has rash. Day 14-Did dialysis again, kidneys are no better. Day 15-Did dialysis. Day 17-Did kidney biopsy today and Drs said they were going to send to Mayo's to hopefully get a diagnosis. Day 18-Drs are leaning toward Wegener's. Day 19-Dialysis again, and still has rash. Day 20-Rash starting to go away. Day 21-moved dialysis catheter from leg to chest. Day 22- Drs confirmed that she has Wegener's Granulomatosis. Day 23-Removed catheter, did two walks with PT. Day 25-Drs discussed treatment with Cytoxan and Prednisone. Day 26-Started Prednisone in a.m., and started Cytoxan in p.m. Day 28-Dialysis again today. Day 31 (July 1). Drs. released from hospital to go to a closer hospital that has a rehabiliation unit. Day 38, Doing dialysis three times a week, still has chest tube. Working with PT everyday to try to gain her strength back.
She is very homesick, and gets very emotional. As soon as she is able to climb a few stairs on her own, she will be able to come home. My dad is completely wore out. He's still trying to work, driving 45 minutes to take her to dialysis, and back and forth 2x a day. They are about an 1 1/2 hours from where I live, so I'm not going to see her everyday like I was in the beginning.
So anyway, that's our story. I have read so many of your stories, and every little bit of information about this disease helps me to understand it more. Thank you!