It has been 8 years today, since I had a lung resection. It was an attempt to try to find an answer for all the cavitated masses in both lungs. I had been very sick for about six months or more, with high fevers, couching, hearing loss, rashes and headaches. The local hospital dx'd me with pneumonia before the surgery and didn't know what it was afterwards either. I had to be admitted to the hospital several times after that for the same symptoms. A friend of mines Aunt had been dx'd with Wegeners, and she suggested that I go to CC, to be assessed. I ended up self referring to Cleveland Clinic, after 2-3 months of not getting any better. I got an appt in July and they sent for my biopsies and reviewed new Ct scans. They called me in late August to tell me that I was to start treatment for Wegeners. I was so sick by then, that it did even register what was going on.
It has been a long journey, with other health issues popping up. I have been dx'd with Wegs in my lungs, sinuses, and brain. I also have Small Fiber Neuropathy from Wegs. Last year, I had to have malignant Neuroendocrine tumors removed from my colon. I still have a lot of stomach problems and am addressing them by eating better.
I have been on all the treatments for Wegs and now just take Rituxan every six months, Bactrium MWF and preds everyday. I am down to 6 pills a day from 24 when I started. I have to hold on tight at times and just do things afraid.
I feel truly blessed to have made it through those rough times. I am so grateful to have all the friends, support and information from the people in this forum. Thank you all, things do get better!!