Patient advocacy versus self-diagnosis

First, the good news: the antifungal I’ve been taking appears to be working. While it’s a bit early to say anything conclusive, I’m optimistic that I may have finally got this thing in check.

Now a rant.

It’s taken nearly a year to even get to this diagnosis, and it’s been frustrating getting here. While in fairness, the invasive form of aspirgillus fumigosis is fairly uncommon (even though the mold itself is everywhere), this became a foregone conclusion for me through process of elimination. I’m exceptionally leery of the idea of self-diagnosis; it simply isn’t helpful. And the subject itself is pretty dense; I never would have guessed in a million years my lungs had been colonized by a mold a year ago.

But this also would have been apparent a year ago, had the hospital taken a sputum sample as I’d asked. I was actually told at the time that this entailed actually going into the lung cavity itself to obtain the specimen; I knew better than that even then.

Thus far, it appears that everyone I’ve come into contact with relies pretty heavily on bloodwork for this sort of thing; when I first consulted with the infectious diseases specialist, my specimen was actually lost, but since the bloodwork didn’t seem to be much of a problem, we decided not to follow through with a second attempt. It wasn’t until my primary doctor insisted on this that we finally discovered that I did have it, at which time it was initially diagnosed as an allergic reaction. Two attempts later, we finally got hold of my last CT scan, which revealed nodes in both lungs.

While I’ll finally be off of the antifungal in three days (which I very much look forward to; it’s nasty stuff and has already hospitalized me for a day due to a side effect that causes fluid build up in one’s joints, which is extremely painful), the best indicator will be when I go in for my next CT scan.

It was finally the pulmonologist who verified what I’d long suspected, however, which is simply that the volume of scar tissue in my lungs has been increasing over the course of the last year. Barring the fact that I no longer have pneumonia, the mold is the only possible cause.

What they were talking about is a procedure called lung volume reduction, which involves a surgery to remove obstructing scar tissue; what was noteworthy was the fact that it was in my upper lungs. Two years ago, when I had my first CT done, I only had scar tissue in the bottom lobe of my left. Better still, even having been adamant that I was not interested in the procedure (which runs a high risk at this stage of having what little muscle mass I have remaining atrophy) and explaining my reasoning, they insisted on referring me to the University of Washington anyway. I don’t mind admitting that I’m intimidated by the prospect of spending three months intubated on a respirator or that I’ve become skeptical of doctors who push elective surgeries, having witnessed first hand how often near term solutions become long term problems, but in point of fact, the prospect of becoming bedridden or wheelchair bound (particularly in this house, which is not at all accessible) obviates any potential improvement in quality of life.

On the whole, I don’t have a problem accepting that I’ve just had a run of poor luck, for want of a better expression, at a bad time. I’ve worked with some very good doctors that I’ve had no difficulty communicating with at all (when I was taking care of other people) but as late, between myself and my sister, run into some incredibly arrogant pricks. Thing of it is, it’s a very difficult subject to maintain any kind of objectivity towards and I’ve seen many instances where what someone thought and what was actually happening had more to do with how counter intuitive the proposition was.

But I’ve also learned to observe what’s at issue carefully (I have not, to my credit, attempted any kind of diary or anything that might be confused with an attempt to chart myself) and explain what’s going on calmly and rationally — in this instance, it’s just been that too frequently I’ve been dismissed out of hand regardless of how I’ve tried to assert myself.

So it’s all hindsight.

Ideally, the CT scan will show that the nodes have shrunk; you don’t ever get rid of the stuff except through surgery and since you can aspirate it from just about anything, the surgery pretty much qualifies as a heroic effort. But hopefully it will be a long time before I have to take this lousy antifungal again. Hopefully, as one of the side-effects is to decrease respiratory function, I’ll also be able to get back off of prednisone, or at least reduce it substantially. As late, I’ve found that sometimes I actually have to double the amount I take to get through the day and sleep at night — the fact that I did freaked everyone out, so I wound up in the hospital yet again just to verify that nothing else was seriously wrong — the doctor there thought I might have pulmonary hypertension, but damn it. I have a high tolerance for some types of drugs, anyway. And the increased dosage was working.

So I scored a temporary bump in my prescription and lately I’m getting by with my regular dose or slightly more. The long term effects really don’t count for so much when you don’t have much of a long term to begin with.

And at the beginning of next month, I’m getting my fucking green card, finally. I brought this up with my primary today as a matter of due diligence; I had no idea if it was anything they’d agree with, but the bottom line is that the way it’s done is to pay a clinic who does it’s own diagnosis based on your medical reasons — effectively you’re buying a legal defense in the event that you’re arrested. It turns out that while they thought it was a good idea (yes, when you use a vaporizer or eat the stuff, it improves lung function) the organization that employs them prohibits them. Which is not to say that I object to consulting with a specialist; but the truth of the matter is that if this was just a pretext for recreational use, there’s also no reason not to simply continue buying it from the kid in front of the 7-11.

What this will do is allow me access to a co-op and allow me to obtain something approximate to a pure strain of sativa (as opposed to indica) which, according to my research, aids in weight retention (not giving you the munchies, but slowing down your metabolism so that you gain weight), improves lung function (something I can validate through direct experience) and most importantly, doesn’t contribute to the sense of I-just-want-to-zone-out-on-the-couch-stupid. More than anything, I’d like to actually want to do something; right now, I don’t. But that isn’t going to happen unless I regain some actual weight and muscle again.

Anyway. Rant off.

Looking forward to at least a moderate improvement, even if it was a total pain in the ass getting here.

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  • Comments (6)
    • jane
    • October 30th, 2010

    (((((Max)))))) crikey, that sounds awful, but at least you have got to the bottom of it and things will improve now ..

    • Laroquod
    • October 30th, 2010

    Happy to hear that your diagnosis has advanced to a place where something concrete could be done! So… fungus, eh? That is messed up, man.

      • Max Bell
      • October 30th, 2010

      Which is how I justified posting this, really. By itself, it’s an “interesting” medical condition — I suspect it’s rarity had a lot to do with why the diagnosis wasn’t made sooner.

      Ironically, right after I saw PJ’s comment, I got a call from a telepoll for the hospital I keep winding up at — I gave them high marks for everything, but was careful to highlight the problem of getting some of their doctors to listen to patient concerns.

      A big part of it? Every medical record I’ve generated so far should be available in a single database where EVERYONE I work with can access it — and they’re not, they’re spread out from here to BFE. Prior to my last visit, the infectious diseases specialist had requested a copy of my CT scan, but in fact was only emailed the pulmonologists’ notes from the result. They weren’t aware that they didn’t have the actual scan itself UNTIL I WAS SITTING IN THE ROOM WITH THEM.

      So I had to go home, call the radiology clinic, have them put the damned thing on a CD and mail it to them, then make a second appointment to get the actual diagnosis. The infectious diseases specialist seemed pretty invested in the idea that it was just an allergic reaction to the mold, though; when they phoned to follow up with me initially, they only said that I “had nodes in both lungs” — the actual phrase “invasive aspirgillus” never came up.

      The bright side is that regardless of which form is involved, the treatment involved hasn’t been any different. While they can put you on IV veroconizole (the antifungal I’ve been taking), everything I’ve read about it suggests that this is a pretty drastic measure.

        • Laroquod
        • November 1st, 2010

        So it’s more a matter of wanting to know exactly what’s up than getting the right treatment, at this point. Much better position to be in, seems like! Still it would be good if these doctors would get all their ducks in a row, it would probably increase my confidence in the diagnosis. Nothing worse than the feeling that doctors are making snap decisions with your life on not enough data — I’ve been there and it sucks.

    • Max Bell
    • October 30th, 2010


    Was wondering what became of you. Wasn’t much of a rant, was it?

    Should have written about something I’m REALLY upset about.

    Like Syfy canceling Caprica.


    • Max Bell
    • November 2nd, 2010

    Laroquod :

    So it’s more a matter of wanting to know exactly what’s up…

    Precisely. I mean, if I would have needed to do the hospital version, then that’s what I would have done. You can’t make an informed decision with the wrong diagnosis, though.

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