Farmer’s Lung and the power of good health {part 2}

Let me just start off by saying I am so sick of being sick. It’s miserable, and as debilitating emotionally as it is physically.

In one of the many instances of “the show must go on” category on the farm, today was shearing day, with Eifion Morgan, the man with the iron back, who comes all the way from Wales every year for shearing season.

And with that, I guess it’s obvious I’m not getting better.  I’ve had good days here and there—even two in a row last week (and the hope glows white hot at those times), but overall, I’d say I’m the same, maybe even a bit worse. And not sure what to do next.

Because here’s what I’ve found: The medical system just wants to swallow you whole and poop you out as a dried, dead turd. The machine of organized medicine, and all its players, seems to have no interest in you as a human being and is far too eager to push you into the “invalid” category.  And all that power you don’t even know that you hold when you’re healthy and well…poof! You are now just a patient (a word I’m not finding fits very well in either of its two meanings).  I’m sure my pulmonologist is brilliant and accomplished, but all I am to her and her staff is a pair of lungs, I think. There seems to be no sense of urgency and, with no pat answers (sorry!), no interest in really looking into anything beyond recommending more tests. While I realize the tests (all invasive at this point) do help to rule things out, I also think that to a large degree we’re chasing snipes. And I also realize that she, and all doctors, are busy and have an incredibly demanding job, with everyone they see being another needy patient. While I’m looking for a medical partner to finding my way back to full health, I find I’m running into the shock-to-my-sensibilities of just being the next invalid they’re seeing.  Invalid has two meanings: “sickly”and “not valid.” It’s kind of scary how quickly you’re moved into the second meaning when they really want to send you home with a pill and call it good.

Nutmeg and her sister after their first shearing. The lambs (almost yearlings now) were all bleating for an hour or more afterwards, not recognizing their mamas or each other after shearing.

And here’s a bit of brilliance from my champion bestie, Laurie (the woman is a rock star, in too many ways to count):

“The problem is that one really needs to be one’s own advocate with medical professionals, and that’s hard to do when you’re not feeling well, and feeling on and off discouraged/depressed. Sometimes, in my jaded opinion, they count on that. I saw on PBS the other night a Frontline by the guy who wrote On Mortality [Atul Gawande – I’ve read and thoroughly enjoyed several of his books], and he talked about the fact that doctors have a hard time dealing with people they can’t help. Someone who doesn’t fit into the pigeonholes they have in their brains is just a pain in the ass, because they get all their self-identification and professional satisfaction from those they can help. Understandable, but something that makes being one of those they’re not able to diagnose and “fix” pretty damned hard.”

Ah. Exactly.

The CT scan showed a number of things; the “ground glass” visual being the most marked for this non-medical professional.  The radiologist’s report went over all the things seen, and what they could be an indication of – many $40 words there.  It was obvious that this person had none of my history (symptoms) so s/he ran down the road with all the scary ones.  Well, they’re all scary, honestly, but the one that fits best, physical symptom-wise, is the hypersensitivity pneumonitis (aka Farmer’s Lung), of which nothing more was said beyond the single mention here.

“Diffuse interstitial ground-glass disease pattern throughout both lungs, from apex to base, with patchy geographic areas of sparing and scattered bleb (cyst)-like lesions.

Diffuse ground-glass interstitial disease pattern is nonspecific. Major differential considerations, excluding CHF and diffuse pneumonia/pneumonitis, are lymphocytic interstitial pneumonia, hypersensitivity pneumonitis, lymphangiomomyomatosis,and Langerhans histiocytosis.

Lymphangiomyomatosis is less likely, since instead of multiple small cystic lesions, there are areas of less extensively involved ground-glass interstitial disease.

Mildly enlarged hilar and mediastinal lymph nodes which favors lymphocytic interstitial pneumonia (LIP). Sjogren’s syndrome is a much less likely diagnosis, mentioned for sake of completeness.

The lungs are clear of confluent lobar consolidation. Negative for pleural effusion or pneumothorax. Heart size within normal limits. Negative for pericardial effusion. Negative for thoracic aortic aneurysm or dissection.”

It’s good to know that the heart looks normal, because these days, she’s the only muscle getting a workout.  With the slightest exertion I’m gasping for breath, my heart pounding like I’ve run a marathon.  The rest of my muscles remain starved for oxygen, so I have to stop frequently to give everything a chance to catch up.  And that’s on a good day when I feel okay.

Now my work begins: 14 beautiful fleeces to skirt and ready for selling and/or processing.

From here, as mentioned in my previous post, the doctor wanted to do a bronchoscopy with a lavage to collect cells, and some snipping at the lung tissue and lymph nodes for biopsy.  I’m not keen on that snipping stuff, though it may come to it yet.  I suggested a conservative approach and we did allergy testing.  And I’m not allergic to anything but bentgrass (what is that?), and that only mildly, and even more mildly, cottonwood (never had any problems with cottonwood).  All the heavy hitters – molds, bird proteins, cat and dog dander, pollens – nuthin’  That’s good, of course (and no surprise to me), but no answer for this Farmer’s lung I’ve diagnosed (hypersensitivity pneumonitis).

I have a follow up appointment next week, where the staff will again tell me to use the Flonase (prescribed by my GP, way back in December – looking for one of those pat answers) that doesn’t work, and to avoid cottonwoods (the farm is surrounded by no less than 50), and ask me the same questions they’ve asked me in the past. I guess no one’s writing anything down, because every time I come in, it’s like we have to start from scratch.

After suiting up and going into battle with the veterinary industry for my dogs (Cutter–over and over they tried to kill him, Farley, Hannah (tried to kill her too),  and Wil (well, actually they did kill him, sniff), most especially; and all of them with the constant pushing of vaccines, heartworm “medication,” flea treatments, etc.), it’s time to do so for myself.  I’m keeping a diary of symptoms – my acute symptoms usually happen on the weekends (most often when I’m lying down – there’s something there…) though the recent days of mild, clear weather do seem to help. I’ve had the heating ducts cleaned to eliminate the crud blowing in the air in the house and now need to have someone come in and do the attic (vacuum out the old, gross blown-in insulation and all the rodent droppings it contains) and the crawlspace needs…something. The mold that’s integral to Farmer’s Lung disease is an exposure related issue, and I need to eliminate exposures, because “the stakes are high” is an understatement.

Gratuitous cuteness. After shearing I was wiped out so came inside and made some soup and toast. Daisy got to lick the can clean, and when we curled up on the sofa for a nap, she kept the can with her, like a drunk and his beer can. Heart her!

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Farmer’s Lung and the power of good health {part 1 of 2}

Got home from work in time to see this the other day – days are growing longer! Weee!

I’ve always been a person blessed with good health. Other than the usual occasional cold or flu, or the rare intestinal disturbance (food poisoning), I’ve been relatively trouble-free for my whole life (aside from some chronic ear infection stuff as a toddler). I’m a both feet on the ground, steady as she goes type. I mainly go for hiking and walking, and plenty of work around the farmstead—lifting, pushing, carrying heavy objects, raking, digging, hoeing, and the infrequent wrestle with a recalcitrant sheep. I’ve had my share of bumps and bruises, muscle aches and strains, and then there’s the old ski injury that crops up (bad sprain of my right ankle in my mid-teens), and knee joints that gripe a bit. And all the stuff that comes with time and, perhaps, not enough regular activity and maintenance of muscles. Like a lot of people, I tend to be a weekend warrior type, especially during the winter when daylight hours are scarce and the weather is unwelcoming. And a few stiff muscles after a busy weekend is usually my only payment. I’ve always been thankful for my sturdy stock genetics, feeling lucky more than once at how tough and trouble free my body has been. No allergies, no gut issues or skin issues, just all around good health, for lo these many years. And of course, even as I’m thankful, I’ve also taken my good health for granted, not nurturing my body as I should. While I eat well (whole, real foods, mostly organic, low carb and not a lot of junk or sugar), I tend towards overeating and also sleep deprivation (by choice and probably my biggest abuse). I’ve not worked at keeping consciously toned as I travel my middle years and the rebound after a weekend of overuse isn’t as quick.

So I find myself with not one but two health issues right now that have been turning my crank for the past few months, and really realizing, like for real, just how good I’ve had it all these years. One is less concerning, especially as this other has reared its head, and while it seemed debilitating when I first noticed it back in September or so—a sharp pain in my left forearm when I rotated my hand/wrist to the inside (diagnosed as tennis elbow when I finally went to the doctor two months later)—it’s now finally healing as a perverse side effect of the other, more threatening issue.

Came to work one day and found this as I unloaded my backpack. Farley’s handiwork, and a reminder of where I’d rather be (at home tossing this endlessly for him). He so sly.

The doctor prescribed a special brace for my arm, a prescription of naproxen and a muscle relaxer, and a recommendation for PT. The naproxen made me dizzy and the brace and PT are helpful, but really, what my arm needs is rest. No feeding sheep, no hauling hay, no toting a 3-gallon chicken waterer up the hill to the coop, or a bucket of feed out there. No raking or yard work, no cleaning of the sheep pen. In short, no farm work, and of course this is impossible. Or so I thought.

In late November I had a few days off around Thanksgiving. I was home and enjoying time with the dogs, and each day would take one of them out for a long walk to the river and back. The river was in flood stage mode, so it was fun to go see each day’s development. On the second or third day, I walked part way there and ran into a brick wall of just zero stamina. I’d never felt this feeling before, so of course I kept going. I had Daisy with me, and she can pull pretty good, so once we got up the steepest hill it got a little easier. Still, it was a weird feeling, like all of a sudden I just couldn’t go another step. That evening I felt a little under the weather; maybe this was a touch of flu?  No congestion or coughing, no sore throat or any other typical flu symptoms, but the low/no energy was strange. I realized I wasn’t able to get a deep breath, and felt some heart palpitations, but attributed this to my thyroid condition (I get these symptoms frequently on the medication to treat hypothyroidism). Over the next few days and weeks I became more aware of symptoms: loss of stamina, inability to get my breath, chilled at night where I could not get warm, then, when I finally did warm up after huddling under a blanket for a couple of hours, it was like I’d stepped into a furnace, and I roasted for the next several hours. My skin would become ultra-sensitive during these cold/hot sessions, like when you have the flu and just the touch of your clothes is irritating. My appetite was down, and even when I was hungry, nothing sounded good to eat (VERY unusual for this chow hound) and I had intermittent, mild to not so mild, headaches . Finally, frustrated (and, honestly, a little scared), I went to the doctor with my grab bag of symptoms. It had been going on for three weeks by this point. I left the doctor’s office with another prescription—this time for an inhaler (bronchodilator). “So am I asthmatic now?” I asked, incredulous, and got the verbal equivalent of a shrug. WTF?

Daisy’s handiwork. Stole it off the coffee table, where I’d left it the night before. You’d think she was a puppy or something. Heart her!

The inhaler didn’t help (and the icky, jittery side effects made it something I avoid anyway), and the symptoms continued. A week or so later I went back, even more frustrated. The mildest exertion would have me gasping like a landed trout, and feeding the sheep was like I’d run a marathon. All my chores slowed down to glacial speed, just so I could breathe. Even so, I’d often have to stop to catch my breath, trying to get enough air when it felt like only half my lungs were working and my windpipe burned like I’d just run a quarter mile in subfreezing temperatures. Actually, I need to change that last sentence to present tense, because little has changed. Going back to the doctor had little effect – chest x-rays, labwork, ultrasound, all is completely normal. A week’s worth of azithromycin did nothing. So then it was off to the pulmonary specialist. I went in for a breath test first, and nearly flunked, with the tester-gal threatening me with having to come back if I didn’t get a decent result by 4:30, and she was “booked solid next week.” Of course the passive aggressive attitude from her did little to improve my results (breathing into a little tube, sometimes with no oxygen available because they shut the valve off on purpose), but in the end (9 times through the test) it seemed we got enough results the doctor would be able to work with.

The actual visit with the pulmonologist was a bit of a bust from my perspective. A few questions where she didn’t seem to listen to my answers. “What else.” She prompted, and again “What else” as I struggled to remember the weird grab bag of symptoms that went with not being able to breathe for the past two months (none of which were typical with regard to lung health – no congestion, no mucous, no coughing, no sneezing, no runny nose or eyes – nothing). She kept asking me about any unusual rashes or swelling (ankles or legs or joint), trying to zero in on something, but I had nothing to give her there, there were none. Time for a CT scan.

The sheep, waiting out a rain squall under the cedars. You can see the seasonal stream in the background. Lots of sky water this year and the hillside is drenched.

Of course as this went on, I talked to a few friends and whined more than I’d like to say. The difficulty breathing progressed to levels that got a little scary at times (since I’m here by myself), with the basic chores reducing me to near-gasping, and even feeling out of breath while lying in bed at night. My friend Laurie, though many states away, has been my staunch support, researching like a fiend (she’s a stupendous researcher). My brother recommended a dehumidifier. I didn’t really get that (thinking, it’s not a typical upper respiratory infection) but took it into consideration. I searched symptoms over and over, with a focus on zoonotic disease. With the dogs, cats, sheep, chickens, and their various and sundry diseases, I’ve never felt threatened by something transferring from them to me since most diseases and parasites are pretty host specific. Well, that viewpoint has changed somewhat, though I’m still not worried that much. For a while though, everything I came up with made me wonder how I’d survived living with and caring for them as long as I have. But still, nothing fit the weird collection of symptoms I had. Every 5 -7 days I was laid low with it, barely able to function some weekends. One day while conversing with my friend Karen she repeated (as she had weeks ago, as my brother suggested, and as Laurie had mentioned early on as well), it really sounds like mold allergies (she has horses, so knows her moldy hay). When I hear the word allergies I think sneezing, coughing, runny nose and eyes, etc. Nothing like this has happened, so when these friends and family had mentioned mold allergies I kind of went “yeah, yeah…” But out of desperation and what the hell, I plugged in mold allergies into the search engine…and almost immediately came up with the “ding, ding, ding” of jackpot.  Huh?  And huh.  Because for mold allergies, we’re into a whole other ball game. And this is kinda serious stuff. Shit.

Dust mask after a week with the dusty hay; before I started wearing this (like for two months with this hay) all this was going right into my lungs. It’s insidious. And, in some cases, essentially deadly.

I now have a dehumidifier.  And while I’ve been careful to wear a dust mask while feeding the sheep, I only started doing this two or three weeks after the initial onset of symptoms. Like anyone who feeds hay to livestock, I’ve broken open my share of moldy bales, often with a puff of weird smelling dust to the face; some where it’s just a small section, others where the bale turns out to be mostly compost. And the dusty hay!  The two tons of hay I had delivered in October was probably some of the dustiest hay I’d had in a while. Nearly every bale had at least one 5-gallon bucket of chaff and green powder to be swept off the floor. And there was some mold too. I fed the last of that batch by early January, but by then the damage was done.

Right now all signs point to hypersensitivity pneumonitis, and more specifically in my case, Farmer’s Lung. A pretty serious diagnosis, and one I’m still researching. My CT scan was done (Laurie is researching the results there – lots of $40 words on the radiologist’s report, and my god can this woman research! I am blessed!) and after reviewing the results with me the pulmonologist wants to…wait for it…do more testing!  Specifically, a broncoscopy with lavage (this actually sounds good) and biopsy of lung tissue and two lymph nodes (this does not). I’m loathe to have them start cutting on me, and since these tests will likely only rule out some of those $40-word potential diagnoses and not supply a diagnosis themselves, I asked if we could start conservatively with some blood tests to check for mold and bird allergies (in addition to a coop full of chickens I also have a couple of budgies in a large cage the house, with me and the 7 carnivores).  It helped that I was having the best day I’d had, symptom-wise, in probably a month or more on the day that I saw her. Not coincidentally, we were experiencing our third day of sunshine/no rain after what seemed like weeks of rain.

I’m so ready to be back to 100% health, and look forward to taking even better care of myself, to stay strong and healthy as I head towards the second half of my fifth decade. I’m still working on how I’ll do this (there is no cure for Farmer’s Lung, and no treatment other than removing the offending matter; and if you don’t, it’s curtains), but trust me, I will figure it out.

Next post: CT test results and allergy testing and the great, gaping maw of the U.S. medical system.  And let me just say, I now understand why Dr. House’s patients always arrived to his care half-dead.

This post’s gratuitous cuteness photo:
Because Pal doesn’t play with toys or balls, and because he doesn’t chew up household items, we just get to see him, not his handiwork. My good little birddog.