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Thread: Yet another conscript....

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    Default Yet another conscript....

    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 But I realize that with another flare the kidneys would likely become toasted and sautéed historical documents.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.

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    Hi Al, it's nice to meet you. I'm sorry you got drafted into this outfit! I love your writing style and am happy you found us.

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    Al
    You have a way of summing it all up...welcome to our group that none of use are to happy to belong to but this support group is awesome....no judgements and a great place to vent , get info and learn from each other
    Want to see a miracle? Plant a word of love heartdeep in a person's life. Nuture it with a smile and a prayer and watch what happens...Never underestimate the power of the seed!

    My mojo for today.....gonna be johnny apple seed and just keep planting
    Lisa Marie
    The happiness of people is not necessarily to have the best of everything...but make the most of what you have!!

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    Welcome Al
    ~ Bob

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    Welcome Al, so glad you made it!

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    Welcome Al. I agree with Sangye, you have a writing style that engages the reader. Sorry you have the need to be here but glad you found us. I couldn't agree more with your statement about the disease being stupid, expensive and annoying in the extreme.

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    Welcome Al. If you have to be in our "boat" this is a great group you have found.

    I'm interested in the fact that you're p anca mpo positive. I am also. However my wg is concentrated in my head & neck......well....aside from the damn fatigue of course. I had thought that those with mpo antibodies had fewer incidences of lung & kidney involvement. Do you have lung involvement as well? Or is your cough caused by tracheal involvement?
    ~ Chris ~
    (Female )

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    Quote Originally Posted by Sangye View Post
    I'm sorry you got drafted into this outfit!
    Well, Sangye, just to keep going with the selective service metaphor: In the Viet Nam war, we had an actual draft. I was a conscientious objector--I opted out on principle. But you can't do this with serious disease. "Sorry, Mother Nature, it is against my religion to get sick" doesn't fly. (If mother nature were recruiting officer--and, in many respects, she is--she would brush off such ploys along these lines: "Soldier, you say you should be disqualified for service because your eyesight is bad. I say you are perfect for hand-to-hand combat. Move!" And one more thing about both sorts of war: They are filled with weeks of boredom, punctuated by moments of sheer terror and the very real possibility of utter ruination. I choose to occupy my weeks of boredom by working and studying everything I can, and the moments of terror storming at the "bureaucrats" that ordered me into this insane conflict.

    Through it all, I thank and bless my foxhole buddies in every way. Thanks, everyone, for the kind thoughts!

    Al

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    Quote Originally Posted by Chris G View Post
    Welcome Al. If you have to be in our "boat" this is a great group you have found.

    I'm interested in the fact that you're p anca mpo positive. I am also. However my wg is concentrated in my head & neck......well....aside from the damn fatigue of course. I had thought that those with mpo antibodies had fewer incidences of lung & kidney involvement. Do you have lung involvement as well? Or is your cough caused by tracheal involvement?
    Chris--The stats suggest that about 70-80 percent of GPA patients have C-ANCA, anti0 CP-3 as histological and serum evidence. But it is a fuzzy line that depends largely on the leanings of the diagnostician. The more important distinction is, I think, whether granulomas are obviously present. (They almost always are when upper airways are involved.) GPA patients often do have lung and kidney involvement, like I do (but I don't have the upper airway stuff or clear-cut granuloma formation. Ny cough, which I have little of while in remission, is all lower respiratory stuff.

    Interestingly, I haven't had had nearly as much fatigue most sufferers, though I do do find myself--never a morning person--needing to sleep in a lot more. Dunno how it is in your family, but I think it is hard for the non-sick parties to understand that compromised abilities are part of the package.

    Al

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    Hi Al,

    I love your style of writing about this wonderful new phase in our lives. My brother can not understand how I can be so light hearted about being il, but it is either try and find the funny side of things or curl up and feel sorry for yourself.

    The thing that really gets me down is the fatigue esp[ecially how people think we are ok because we look well and fit.
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

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