Seems to be the thing to do here, so I'll continue the tradition by whining out my story for anyone to read...

April 2012 I had been slipping down a strange slope for five months, with seemingly unrelated medical problems which had no apparent connection (except in hindsight). Hands crippled by extreme pain (veins being attacked). Upper respiratory issues so severe as to be indescribable (I was passing out due to lack of oxygen). Tissue... uhm... abnormalities... in my mouth which were so severe there was discussion of pulling all my teeth before they fell out, and then amputating half of my jaw. Mild chest pain from both heart and lung areas. Swelling in legs and feet. Extreme fatigue. Also a mild case of general ugliness, but that predates Wegeners.

So... the periodontist (absolute dedicated genius) spent an hour and a half looking into my mouth for the third or fourth time when he said: "I need to take a tissue biopsy and send it to a lab in California." He had just figured it out from memory of a patient long ago, and wanted confirmation before telling me. Biopsy result and positive C-ANCA confirmed Wegener's diagnosis. My symptoms were already extreme but rapidly escalated, three days later I was in the hospital.

The hospital emergency room started treatment of 150mg cyclophosphamide and 80mg prednisone. Four hours later I was eating a grilled ham and cheese sandwich (making you hungry?) had fries too. It had been two months since I ate anything close to solid so this looked like instant cure (hospitals don't take much time to explain things to patients). For three days they put cameras anyplace they'd fit and used every imaging machine they owned to scan every part of my body, often more than one time. They took tissue biopsy of, uhm, all over. Worst damage was to lungs, heart and upper respiratory. Veins recovered almost instantly and I felt great on that much prednisone, at first, I'm sure anyone here knows that story.

A month later my wife was diagnosed with breast cancer. She survived it in 1999 and now it was back in her bone marrow. A year later, summer of 2013, I'd been in the hospital 7 times and was not very hopeful. Lungs recovered, heart never will, fatigue is awful but I had managed to work just enough to keep my job and health insurance, all while taking care of my very sick wife. By then I had survived more life threatening issues than I can remember, including massive blood clots everywhere but my toenails. Deep vein thrombosis, blood clots breaking loose and passing through my heart only to get lodged in lungs and back of my brain. Good news is at that time I was hardly using the wheelchair because fatigue had become less an issue, and the multiple DVT(s) in my legs were finally less painful.

Sue died in June of 2013. August 2013 I developed bladder issues. I had a live in volunteer nurse who kept taking me to the ER. Spent most of that month in the hospital learning that what they call a catheter is actually the size of a garden hose. Lost my job because I had no legal job protections remaining, no prognosis, and no guess at when or if I'd ever be able to return to work... Spent six months recuperating from the bladder problem, never got a real diagnosis as to what the problem was, no doctor would stick his neck out to guess on that one.

I was rehired February 2014 as soon as I got a release to work. Keep in mind that this entire time I have been battling one infection after another. By March of 2015 the infections had drained me and prednisone destroyed whatever wasn't drained (down to 5mg, traded cyclo for azathioprine). At one point I went blind five times in one week, need glasses now but eyesight is nearly stable. There have been so many issues that eyesight seems trivial. Did I start by warning that I would whine out my story?

March 2015, sinus infection didn't respond to antibiotics which had worked numerous times before. Took Cefprozil and Methylprednisolone to kill it. Nearly killed me as well, I can't get back to anything like normal. I was unable to return to work and now rely on VA for health care (kinda not so good) and I'm trying to navigate the insanity of applying for Social Security Disability. If that doesn't get approved I'm really in trouble.

One last note... I got me a totally bitchin wheelchair now... so I can actually get groceries during less fatigued periods.

Done whining,
Gary