I'm not sure if this can go here, or if it should go in PAP--but it's not really a parenting issue, so...mods please move it if it is inappropriate for here.
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I'm mourning my husband's health, and the possible loss of our long, healthy future together. I just can't wrap my head around why I'm so upset about this, because he seems healthy, and isn't limited at this point. I just need to share, and I hope its okay to do here.
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Basically, Huz's “sinus disease” as they call it, is eating away at the bone/tissue in his face and head, while obstructing his sinus passages. The obstruction of the sinus passages makes a hospitable environment for the fungus. So he’s got globs of fungus (like brown ground beef stuff) and polyps in his sinuses that have to be removed. Best case scenario is surgery every three years or so for the rest of his life, unless he finds a “non traditional” way of slowing the growth of the fungus (like living in Canada or something). Worst case scenario is that the fungus eats through his brain case and gets in his brain and eats his brain and he dies.  If he does nothing, this is what’s going to happen. It doesn’t sound like there’s much treatment for that, and it can happen in a month or in twenty years. It’s analogous to cancer, if that makes sense. Basically the treatment would be medication, which is not very successful and has horrific side effects (destroys your kidneys). Possible complications from the surgery include piercing the brain case (like the fungus will do without the surgery) and severing the optic nerve (mostly repairable but not entirely). If the doc gets in there and finds that there are polyps in the sinuses in his forehead, he’ll have to have another surgery where they will open his face up by peeling back his scalp (for cosmetic purposes) and clean them out that way.
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This will be his second surgery for this issue in two years. As far as the last surgery goes, this doc said there’s no way of knowing whether the missing bone under his eye is from a mistake by the last doc or from damage done by the disease. So no lawsuit, I don’t think.
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Huz is handling it surprisingly well. He’s basically been told, “this is what is going to kill you,” and seems okay with that. He said, “it’s not the worst thing that could happen….” Which I guess is true. But it is hard for me. I’m trying to act strong. This just isn't the life I thought we would have. Its so selfish of me to be thinking these things.
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Even in a worst-case scenario situation, we would be okay. I have a terminal degree and experience in my field that would provide for us, we're adequately insured, I have strong family support (although not nearby). I could keep it together and raise our daughter if I had to. But this isn't what I want for us. I'm not sure if any of this is making sense, because I'm pretty distraught right now. I need to pull it together before lunch time so that Huz won't be able to tell that I've been crying.
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Thanks for listening. I didn't write the name of the disease because I don't want this to pop up when Huz does a google search. I might need to edit more for that reason.Â
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Kate
