Looking over the forum’s posts, I have been moved by the sincerity the good will, and the stories of everyone. I, too, wish to pay tribute to Jack; I never knew him, but he seems to have blazed a worthy trail. Though no Leonard Cohen, I am also a guy with a hat (for aesthetic reasons, along with of the dearth of fur), which I tip to Jack--and all of you.

Let me introduce myself. I entered “The Club” in March, 2010. (My induction was, to be sure, not entirely voluntary: I thought I was going into the hospital for a biopsy; they “invited” me to stay...). At that time I was diagnosed with Wegener’s granulomatosis--these days called GPA. In retrospect, perhaps the better diagnosis might have been MPA--Microscopic Polyangiitis--GPA’s equally evil twin (anti-MPO, with a P ANCA pattern, as opposed to anti-PR3 with a C ANCA pattern; no obvious upper respiratory involvement; and little evidence of granulomas). No matter: They are both ANCA associated vasculitides, and the treatments, the prognoses, and the hypothesized etiologies are pretty much the same.

I endured the standard course of therapy: plasma exchange, CTX pulses, and enough prednisone to give a three herds of elephants technicolor dreams for a lifetime. (Do doctors, I wonder, recommend all this crap to their own loved ones?) Of course, I’ve had most of the usual side effects, along with a few of, seemingly, my own invention. The nastiest of these was a case of shingles (an ailment I strongly advise against trying). I implicate the immunosuppression, for both the outbreak (I had had the inoculation), and, at least indirectly, the ensuing vasculitis relapse (last March), which occasioned another round of immune system whack-a-mole. Right now, I am apparently stable, on a maintenance regimen of azathioprine and lower dose prednisone. The numbers are at least not going further downhill at the moment, and I am able to work and otherwise be a useful participant in life (my wife might roll her eyes at this). But I realize that with another flare the kidneys would likely become toasted and sautéed historical documents.

It has been an...interesting journey, to say the least. The things I’ve learned about, well, a lot of stuff--especially the inner life of the immune system, but also about the inner life of life itself--I am grateful for. Yet, I am not quite ready to call the experience a “gift”. The saying is that whatever doesn’t kill you outright will make you stronger. So, growing stronger, yes, in the sense of knowing more. But this disease can (and may yet), in fact, kill any of us outright--literally, metaphorically, or both.

The disease itself is stupid, expensive, and annoying in the extreme. Yet we muddle through and learn and do what we can. Still, it takes a village, of sorts, to deal with the stresses and ordeals. A family, however it is defined, is, I believe, an absolute requisite. We all need a coach, advocate, cheerleader, teacher, good (maybe even understanding) buddy, someone to accept and take joy in our need to serve, and an exegete of the sacred medical texts. Few of us can perform all these duties for ourselves. (We are, after all, sick folks--really sick!) Perhaps in an ideal world, all these team functions would be subsumed by the medical care givers. But the system is not built that way. I personally know few people--certainly no one with this complex a disease--who can afford so many professionals on staff. Anyway, even if we have pretty good help, exceedingly few of us, I suspect, are treated by doctors who have first-hand experience with our problem. Drac (I’ve taken to calling my main wrangler Dracula for the massive amounts of my blood he wants; also his proclivities for pre-sunrise hospital visits) has been pretty good, and tolerates my plaints and rants as well as anyone in his line of work, but given the piddly amount of time the insurance allows for an office call....Speaking of doctors, I am lucky in that all mine seem to be pretty knowledgable about ANCA Vasculitis. On the other hand, some who should have caught the thing earlier did not--I’m looking at you, Dr. Hotshot Pulmonologist--and even Drac, the nephrologist who tracked it down, didn’t, at first, want to seriously entertain the the idea of a cough-kidney connection. In any case, here I am. Here we all are, until we aren’t. I am thinking that this forum can, in many ways, serve as the extended family in the above sense. After all, we also need fellow explorers in this voyage of discovery.

Al

PS, for those interested, I have posted elsewhere (The Stuff of Life: When Things That Need to Work Don?t) some extended musings on a few related issues. Naturally, my views are colored by my unique experiences. We all have different perspectives, and many of you live under vastly different styles of medical care. I would appreciate your own comments and comparisons in that regard.