Hypersensitivity pneumonitis – lung thing part 3

Some mornings it’s just hard to leave for work.  Looking at the NE corner of the property.

So a quick (I promise) recap.  This all started in November 2014 and has been a roller coaster ride of symptoms and medical care ever since.  After my initial diagnosis (now revised) and treatment, I was feeling good by September of 2015.  In late November 2015 some of the symptoms returned (shortness of breath, primarily).  I managed this until late February of 2016 with ibuprofen, until I needed more help.  I saw the specialist in March and began a regimen of prednisone.  A lot of it to start, then tapered down after 10 days, then tapered again after 30 days.  But still a high dose.  I’ve been on this dose since April and have been feeling good, with breathing back to normal and heart rate also returning to normal (since my lungs are working, my heart doesn’t have to hit overdrive to pump more blood in an effort to oxygenize).

Groot the kiwi vine trying to swallow the front porch.

Allergy testing last year showed I have no allergies – no surprise there – but the specialist, in drilling in on the hypersensitivity pneumonitis rediagnosis, performed antigen testing (IgG vs. IgE), which showed I was reacting to bird feces and proteins, as well as a couple of molds, so my particular brand of hypersensitivity pneumonitis (HP) points to Bird Fanciers Lung (there are dozens of versions).  I was told I needed to remove chickens from my environment, as well as my two parakeets (cage birds), and clean the house thoroughly.  The molds are likely ones I’ve run into with the hay I feed the sheep.  Antigen reactions are essentially allergies, but manifest differently (in my case there was absolutely no coughing, runny nose or sneezing typical of allergies).

The days are getting decidedly shorter.  After getting home from work in the evenings I barely have time to do the evening chores before darkness falls.  So sad. 😦

I saw the doctor again in late May, when I repeated my tests and did well (breath tests as well as a walking test to see how well oxygenated my blood stayed with exercise).  The doctor was pleased with my progress, and very happy to hear I had rehomed the parakeets, but because I still had the chickens, and she was concerned I needed more time on the medication, we stayed at the same dose of prednisone.  I told her I would hire help to get the chicken coop thoroughly cleaned out and let the flock “attrition out” – the birds are aging and not worth anything, so not easy to rehome (there are 21 of them right now).  I lost one over the summer, but of course they seem to be feeling spry, even if they’re not laying much on the expensive organic feed I give them.

Hops!

The entire harvest of hops for 2016. Next year will be different!

My next appointment with her was September 1st.  In that 5 month period (April to September) I have gained weight.  A lot of weight.  This, of course, is a common side effect of the prednisone – one of many – and this time around it seems to be the main one for me.  I have an appetite like a lumberjack.  I’m not hungry all the time, but when I get hungry it’s hungry-bear hungry, and it takes a lot to be sated.  Like, half a large pizza. Or an embarrassingly large portion of a whole roast chicken.  I tell myself I’m going to moderate my eating, but when I get hungry and the food is in front of me, well, I don’t have much restraint.  I don’t quite check out mentally, but the thought of moderation is dismissed entirely.  Leftovers are a thing of the past.  I’ve been bursting out of all my clothes, and have had to buy new things—in a size I’ve never worn in my life—so I have something to wear that isn’t embarrassingly tight, not to mention uncomfortable.  I’ve resigned myself to this weight gain for now, knowing the prednisone is necessary for my lungs, but there are moments of shame and self-consciousness at how I look.  Now any breathing problems I have are from inactivity, and trying to increase my exercise has been difficult: I’m assuming it’s because of the extra weight, but my ankle (old injury) has been giving me trouble for the past couple of months, so even a walk with the dogs has been off the docket.  I can’t tell you how frustrating this is, because even with all my whinging I am still grateful for my mostly good health. And on the positive side, we have reduced my prednisone by half in the past two weeks.  Yes!  With the appetite becoming more manageable it’s time for a weight loss diet!  Wee!

I took down a small maple over the weekend.  The sheep love the leaves and tender bark.

I’ve been slowly coming around to the idea of giving up the chickens.  I haven’t hired anyone to help with cleaning yet, mostly due to financial reasons (keeping up with medical bills, frankly).  So the dry, dusty summer, with the hens happily fluffing their feathers in numerous dusty bowls they create under the cedar trees, then the dogs walking through that, or lying in it, then coming to curl up in bed with me…well, I’ve got my head in the sand on the whole issue.  I let the hens free roam, but probably shouldn’t. In thinking about giving them up, I think about why I keep them; indeed, why I’ve been keeping them for most of my life (since 1982). I want to produce as much of my own food as possible, and have a little more control over this aspect of my life.  But I also know part of the reason I keep them is for the bucolic calm they exude, and coming home after a stressful day at work to watch my little farm at work is soothing to me. And although chicken TV has slowly been supplanted by sheep TV and honeybee TV, I still like having them, and the eggs they give me. With the sheep and the bees it’s a little easier to lie in the grass next to them (the chicken run is too grubby-gross to lie in or even next to).  They are enormously entertaining though, and, as with all my animals, knowing they are happy and enjoying a good chicken life is deeply satisfying, even fulfilling, to me.

After the visit with the pulmonary specialist earlier this month, and discussing the situation in more detail with her, I realize I have to do this.  I’m still very reluctant, and if I think about it too much I get a little teary.  I am simultaneously frustrated by the whole situation.  I have kept chickens for 35 years now, and had the parakeets for the past 15 years.  Why all of a sudden am I having problems?  There is no answer to this, of course, and it’s not unheard of or even uncommon, as a situation.  I guess what goes hand-in-hand with this is frustration is the worry: what if I get rid of the chickens and still have problems? What then? I don’t want this to be a slow elimination of everything I love most in life. I can’t get any traction with my vaccine theory, but I do think this is a factor in the initiation of this whole issue.  While I’m not “anti-vax” I am anti over-vaccination, and the bundling of vaccines.  A tetanus shot I received in early November 2014 came bundled with two unnecessary (to me at the time) vaccines: pertussis and diphtheria.  Within 3 weeks the symptoms of HP began – probably sooner, I just didn’t realize it – and by the end of November I was one very sick puppy.

The leaves are turning color and beginning to fall.  It seems too soon. I’m not ready.

I still think this is a “perfect storm” situation. And I know it’s done, and there’s no going back (“that ship has sailed, Mo”), but part of me wants to know.  Because maybe, eventually, and maybe it will take moving off this farm to a new location, I will be able to not worry about this anymore.  I believe the combination of the moldy hay I was running into at the time (purchased a ton of hay that year – the guy who delivered it said it came out of Oregon; it was some of the dirtiest/dustiest hay I’ve ever encountered) and the hit to my immune system from these unnecessary vaccines (the tetanus wasn’t really needed either – for the situation nor was I due, but with the animals/farm I know it’s a good one to keep up to date so I consented when I should have refused), added to a little normal life stress and a strenuous (and thoroughly enjoyed) day hike 8 days later, well, it all added up to a baseball bat to my immune system that I’m still recovering from.  I will never, ever (ever!) again allow myself to be vaccinated with three immunizations in one injection.  I will continue to refuse the annual flu vaccine (never had it, never will) even though my pulmonologist recommended it at my recent visit.  No, that’s not one I’ll do, I told her, emphasizing “I am NEVER sick.”  She looked at me with just enough of a pause that I burst out laughing.  She laughed a bit too.  And said she would nevertheless continue to recommend it to me, given my diagnosis.  But really, I don’t get colds – my last cold was in 2012 – and aside from this issue, I’m healthy and strong.  And once I get this thing figured out, I intend to sty that way.Gratuitous cuteness: Eloise, a.k.a. El, ‘weesa, or Pudge.  The only one of the three cats that will regularly brave sleeping in bed with me and the three dogs.  Heart her to bits.

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No birdz allowed – lung stuff part deux

Another glorious Pacific Northwest summer is winding to an end. They are always too short.

Continued from previous post:
So I left the specialist’s office that day in March with a couple prescriptions – one for oxygen at home, and one for steroids (prednisone) – both of which I’d used a year earlier, and both of which I didn’t want to do, although they help immensely. I knew the oxygen use would be short-lived, as once the prednisone kicked in and inflammation was neutralized, I no longer needed it. While its benefit is huge in that 10 – 14 day time frame, I just didn’t want to deal with it (both the admittance that I needed it nor the growling, hissing activity of the oxygen concentrator, not to mention the medical rental of the machine, although this experience/company was MUCH better than last year’s). And, after all was said and done, I spent over $630 on the rental (insurance only covers so much)  for the 10 days of use, because the doctor wouldn’t okay its return until she saw me again…in May. I would have done better to purchase one of my own at that cost!

Blossoms on my beleagured hop vines (the sheep love the hops)

And then real live hops!

Not quite enough to start brewing…yet

Hops are hopping!

A few weeks after my visit we got the antigen tests back. And while most everything was in range (they test for a variety of typically encountered organisms) there were a couple of molds that were moderately out of range (high) and two others that I just didn’t expect: pigeon droppings, and pigeon feathers and proteins. Which, of course, means all avian. (I’d tested negative for bird allergies last year.) The doctor knew I had chickens (we’d discussed them with the sheep) and she flatly said I had to get rid of them. I was dismayed, not really understanding if they were outside why I had to get rid of them. I live on acreage. There are birds EVERYwhere. And geez, I’ve been keeping chickens pretty much my whole life (a continuous flock since 1981). But what she didn’t know, and I of course then shared with her, is that I also had a couple of parakeets in the house. And these two, I realized, I would definitely have to place. Dang.

Of course these results, combined with the review/reassessment of my prior tests and procedures/pathology (done elsewhere) by the UW pathologists, confirmed the rediagnosis from sarcoidosis to hypersensitivity pneumonitis. The doctor was very clear that I had to get the birds out, and once they were out, a deep cleaning of the house (wall washing, floors, furniture, etc.) that I was NOT, under any circumstances (even with my fancy respirator mask) to do myself.  Okay, but… “Have some friends come over to do this for you.”  Um, no. I would hire someone before I asked my friends to do a deep clean on my house.

Feeding the sheep after a long day at work.

Just throw it.

The first thing I did was take the parakeets, Hugh and Cate, to the vet. I was going to give them away, probably via a Craigslist ad, but wanted to be sure they were healthy before I did so.  Hugh was dealing with some kind of mite or lice infestation – not horrible, but his feathers had looked a little rough for the past 8 months or so (I’d treated with mite control, using the vet’s recommended protocol, to no discernable improvement). Cate looked fine, so maybe there was something else going on with Hugh?  Sure enough, lab work showed he had some elevated kidney values, moving towards gout (who knew?). And here is where my angels helped me out. As the vet relayed the information about Hugh’s bloodwork and recommended treatment (and expense – I’d already spent over $200 for their checkup and lab tests) – fluids once a day for a week, retest blood work and re-evaluate treatment – I was simultaneously trying to digest the information and figure out what to do. She knew of my health situation, as I’d explained it to her/the clinic when I brought Hugh and Cate in for the exam, and then she very kindly and graciously offered me a solution. If I wanted to, I could sign Hugh over to the clinic, releasing ownership and entrusting his care and eventual adoption placement to them. I hesitated, thinking of Hugh – while he wasn’t a bird I’d handled regularly I still felt affection for him and of course responsible for his well-being. I’d had him for 8 years and he was a cheerful, beautiful little guy. But I knew the treatment he needed was outside my ability at that point, and I didn’t want to place him with the hope that whoever adopted him would do the right thing with his care (nor was it fair to place a sick bird with anyone). What was best for him was to sign him over to a place where he could get the care he needed. I brought him in a week or so later. The vet, Dr. Carter, gave me a hug as I signed the papers and said goodbye. I mostly held it together until I got in the car to leave, and then had to dig around in my glove box for a tissue to wipe the tears away so I could see to drive home.

Cate and Hugh

Cate, now Mango

For Cate, now alone, an equally miraculous solution occurred. She and Hugh weren’t bonded, and in separating them she actually seemed happier. They never fought, but they never seemed to hit it off (I’d had her about 3 or 4 years). The weekend after I placed Hugh with the vet, I went to a local spring fair with a friend who also raises Shetland sheep. It was a great chance for her and I to catch up on the drive down, and go see the sheep and fleeces, and booths from sheep farmers and wool vendors, plus chat with other sheep people we both knew. She asked about my health update as we drove back home that day, and I gave her the whole long story of the new doctor and findings all the way to the need to place the parakeets. As I yakked away, she began texting a coworker whose son was an animal lover and had recently said he wanted a parakeet. I didn’t even notice she was texting until she told me about this possible home being available. The coworker texted back that they had already gotten a parakeet, but said they would think about taking Cate too.  From the description, it sounded like a wonderful home, and I sent photos of Cate along with a description of her personality. It turns out the boy, aged 10 or 12, had wanted an all yellow parakeet, and was thrilled to see Cate was exactly what he was looking for. “It’s kismet,” he told his mother, who contacted my friend to let her know they’d take Cate. The boy renamed her Mango, which I just love.

The badly placed kiwi vine (here when I moved in) once again trying to take over the front porch. I’ve lopped off nearly as much as you see here. I need to transplant him. I call him Groot.

So my house was parakeet-less for the first time in 10 years or more, and it was eerily quiet. But I knew it was for the best and it seemed miraculous that both birds were placed almost effortlessly into situations that were perfect for them. I cleaned up the area they’d been in, vacuuming well and wiping down the wall and windowsill where I’d kept the cage, and of course moving the cage out to the garage (and hosing it down outside first). Next on the agenda was testing my environment for toxins in the form of molds and bacteria.

The plum tree was laden with its ping pong ball plums this year, the branches groaning under the weight.  The dogs and the sheep have been enjoying them.

I contacted one of the companies on the list the clinic had sent me. The fellow there, Payam Fallah, was a wealth of information, and we discussed my antigen test results and the animals I have here. Like my doctor, he too was a dog lover, which felt good.  Both of them not only understood the dog connection, they both confirmed that dogs/cats rarely are an issue in these cases. Payam also has a tortoise (I’d shared that my menagerie includes a box turtle), and we had a good discussion about our mutual love of animals. Again, this was reassuring – I didn’t want my animals to be automatic targets for removal because of an overall dislike of animals by the professionals I was dealing with.  He sent me sterile swabs/kits for me to take samples in my house. He told me that taking swabs in my detached garage – where I store the sheep’s hay (and the mold inherent therein, which I believe to be one of the major factors in the original manifestation of this health issue) – is pointless, as there are so many molds in the environment/outdoors. Okay…

My sheep maintenance in my fancy new “deck chair” (sheep restraining tool) wasn’t as easy as I’d hoped.  The Shetlands are squirmy, and Trixie, above, probably the worst of the lot.

So I took four samples: one in the bathroom, one in the bedroom, one in my office, and one in the main room of living room/kitchen/“dining” (my house is tiny; this last area, at roughly 500 square feet, encompasses half of it).  A week later he emailed me the results.  Which basically said my little house was fine.  The highest mold readings were in the bathroom (duh), but a) the mold count wasn’t astronomical and b) the molds were not the ones that showed up on my antigen tests. The bedroom, where I was most concerned (for the crawlspace underneath), had a big fat doughnut for results. Which was good. Despite the fact that I sleep in a pile with the dogs (and a brave feline or two) every night, and the crawlspace was an unknown quantity (can’t access), absolutely nothing showed on the swab I took from a wall sconce above my pillow. Thankyoujesus.

The big hive, the weekend of August 13.

Less than 5 days later I was seeing an unusual number of dead bees.

A quick inspection after work last week and there were almost no bees left, and honey stores nearly gone. It’s too late in the season to restart.

I still want to do a swab in the garage, and maybe I still will (have one left, and spreading out the cost is a good thing too – out of pocket, it’s $40 each swab to see if anything grows). But the house is fine.

Now to figure out the chickens…

And I do!

With her favorite toy, the garbage can lid.

All this and more!

So cute!

She is a badass; I’m reading books to learn how to be more like her!

Heart her to bits!

Health update on the lung thing {zzzzzzz}

The ovine greeting crew when I get home from work every day.  From left, Mungo, Minnie, and Trixie.  Mungo and Trixie are Minnie’s twins from 2014.

So it’s been a few months since my last health update. One reason, as you might have guessed, is that I’m doing better, for the most part. No need to kvetch when you’re feeling well.  The second reason is simply that it’s deadly boring to go on about your health issues, and (something I’ve mentioned here before) it feeds the “unwell” and gives it power. Your illness becomes your story, your story is who you are and how you identify yourself, and you get sicker. Then there’s the old “Attention Whore” aspect, as my delightful niece-in-law put it (she’s dealing with her own very serious health condition with grace and dignity, a great attitude and humor!). Enough already, you know? So I’ve blogged about topics that interest me more – the farm, the birds, my bees. But a few of you may have wondered, so I’ll try and be brief (a challenge for me, Verbosity Queen that I am) and update here.

Daisy reluctantly helping me test out my new sheep “deck chair” after I put it together. It’s  equipment to help me with sheep maintenance like hoof trims, vaccines, and worming.

First and foremost, I am seeing a new doctor. I went to see this doc as a “second opinion” type of thing back in October 2015, when I was doing well. Then,  just off 6 months of prednisone therapy and a dry, sunny summer, I felt fine, even great. Even so, seeing this pulmonary specialist in interstitial lung disease and a sarcoidosis specialist at the University of Washington (at my own request/initiation) seemed prudent. My higher self looking out for me, perhaps. It was a bit of a hassle to get there, which is why I hadn’t gone before, but my interactions with the pulmonologist I’d been working with so far hadn’t been reassuring or inspired trust.

The bees bearding on a hot summer night. Basically hanging out on the stoop where it’s cooler, just like you or I would. But without the cold beer.

The visit with the specialist went really well. I had a good rapport and she went over my records (illuminating me further on things that hadn’t been shared before). Since I was doing so well at the time, she suggested a recheck in six months (April 2016). Six weeks later, however, the symptoms returned. I wasn’t as bad as the year before, when all this first started (November 2014), but breathing easily was an issue again. So I went back to the original pulmonologist and had the worst appointment ever. I think if I had been hit by a bus on my way out of the clinic she’d have been happy to be rid of me for good. I wrote about it here, with a promise to update but I never did.

The junco’s nest I was watching in June/July.  Only one egg (of four) hatched, but the chick was gone within a week, likely a meal for a shrew.  The pair tried again in a new nest location, again with four eggs, but none of them hatched, though the female was diligent.  It looked like they weren’t fertile.  The cats invaded the nest (after it had been abandoned) and broke a few of the eggs – there was zero development.

I struggled along, dosing myself regularly with ibuprofen (3 tablets every 22 hours or so seemed to keep the inflammation manageable) and mostly feeling okay. If I didn’t walk fast, and anything physical was done with lots of breaks to stop and catch my breath, I managed okay. The best way to describe this is I feel like I’ve just run a 400-meter dash when all I’ve done is walk across the driveway to the garage. It’s not like asthma or other bronchial constrictions, where I can’t get enough air in physically, it’s more that when I do huff and puff, the oxygen isn’t making it to my bloodstream. Then, in February, everything came to a grinding halt with a ramping up of tasks and responsibilities at work, and accompanying high stress. The ibuprofen dosing wasn’t keeping up, even when I upped the frequency to every 12 hours. I called the specialist’s office. They set me up with a late March appointment, which sounded fine. A week later I was feeling bad enough (and, frankly, a little worried at how badly I was doing) that I called and asked if they could get me in sooner. My appointment was set for early March.

Farley, giving Daisy the stinkeye, complete with vocals, when she asked “You gonna eat that?” He was trying to save his for later and she already ate her three.

Daisy, after dust-bathing with the chickens.

I went in for a 1:00 appointment, thinking I’d be home by 3:00 or so, but it was after 6 p.m. before I got home that night. First the respiratory therapist come in for my walking test. He hooked me up to the oximeter and we began the six minutes of walking at the fastest speed I was comfortable with – I’d aced it back in October.  Within a few dozen steps he stopped me, thinking the oximeter wasn’t hooked up right and needed adjustment. I looked at the number showing and said blithely, “No, that’s right. That’s what it does.” (I monitor my blood oxygen and pulse rate at home.) It was reading low 80s at that point (which wasn’t as bad as it got while I was feeding the sheep or caring for the chickens). He seemed alarmed and said “You need to be on oxygen.” And stopped the test. “No,” I protested, thinking it was no big deal, “I can just walk slower, I don’t need oxygen.” He wasn’t having it and took me back to the exam room to wait for the doctor.

The male dark-eyed junco singing from the red huckleberry stump last month.  None of the songbirds are singing now – nesting season is over – so my  much loved Swainson’s thrush serenades are over until next May.

A few minutes later she came in and sat down.  After the initial greetings she said “I was thinking about you recently.” (Moi? I was more than a little surprised.) “You weren’t originally scheduled to come in today, were you?”

Well, this was a “You had me at hello” moment for me.  I saw her one time, five months previous, and if she even remembered who I was it would have been enough. This, though, had me glowing with a “you see me” warmth. “No,” I replied, “my appointment wasn’t for another two weeks, but I haven’t been doing well so I called to move it up.”  And off we went. I told her how I’d been doing, my symptoms, how they’d gotten worse, what I thought was going on (job stress), what was (or had been) working, etc. Then she told me how it was.

The fruit of a manroot vine (Marah oreganus) along the driveway, looking very Dr. Seuss-ian.  A Northwest native, the fruits are about the size of a plum, the “spines” soft and fleshy. It’s a relative to cucumbers and gourds.

First of all, the reason she’d been thinking of me is because she had another patient with symptoms very similar to mine, who was also a referral (i.e., also already diagnosed when she came in). Like mine, the other patient’s symptoms and tests didn’t add up and when they looked into it further they found that, no, this other patient didn’t have sarcoidosis but rather hypersensitivity pneumonitis (HP).  Hmm.

So she ordered up all my slides and pathology from my previous doctor/hospital and planned to have the UW pathologists review them. And she recommended more testing. We did a CT scan that day.  The results showed no change from the one done a year ago (meaning no worse, which is a good thing, considering how poorly I felt). And she also ran some antigen tests. An antigen is a substance that your body reacts against, such as molds, dusts, and chemicals. Last year I requested allergy testing – partly to buy time (the previous doc only seemed to really want to do the bronchoscopy) – which is a different thing (IgE vs. IgG).  Everything on those allergy tests last year came back normal, which wasn’t a surprise, but it ruled out things I was worried about (the dogs and cats). I don’t have allergies, and only very rarely react to something I’ve eaten or in my environment.  Antigen testing though is testing to see if I had things I was reacting to via antibodies (proteins that your body creates in response to antigens). This, if you’ll remember, was more what I was thinking was going on back in February 2015. Specifically with moldy hay and a condition called Farmer’s Lung. There are many antigen variances of HP – farmer’s lung, bird fancier’s lung, wine grower’s lung, woodworker’s lung, etc., and I asked the doc about testing in the home (I’ve been very concerned about potential molds in the crawlspace) and she supplied me with a list of companies that tested for home toxins. This felt like real progress, for the first time in a year!

The flock is down to 10 and the freezer is full. The meat is excellent (from 4-year-old sheep).

And then she had me redo the walking test with oxygen. And I was a-mazed at the difference.  For weeks I hadn’t walked faster than a snail’s pace without running out of breath.  With the oxygen (turned up to twice the normal flow rate) I was almost back to a normal pace.  Wow!  It felt incredible! I guess they’re right {joking} But it unfortunately meant she wanted me to have oxygen at the house again. She was unimpressed with my fancy respiratory mask and the care I take (covering my hair, etc.) when feeding the sheep and insisted I get someone to feed them for me, and to keep my contact minimal. I understand her concern and insistence, but felt that until there was conclusive proof they were an issue, I would continue to take precautions and protect my breathing around the hay feeding.

Yay. Had this beauty in the bathroom for three months, though I only used it for about 10 days. A mere $600 out of pocket.

I used this exactly once, when I went out to the garage to feed the sheep. The doctor and respiratory therapist wanted me to bring it with me when I went shopping, or anywhere outside the home. Not. Gonna. Happen.

The bottom line is the doctor feels that I probably don’t have sarcoidosis – even the radiologist’s report of my CT scan last year had zero mention of this as a possible diagnosis. I remember my last pulmonologist discussing the diagnosis after the bronchoscopy procedure (an abbreviated visit, where the doctor was talking fast and was very short with me—because I was 10 minutes late, I guess—and indicating the results weren’t entirely conclusive as sarcoidosis but that’s what they were going with for my diagnosis and treatment. Wait, what? Ookay. (?!) But now, this specialist pulmonologist was taking the time to go the extra mile and do some actual research into my case, and ME.  Again, this felt incredible. (Before this, with the other doctor, I felt like I was the only one doing any research into my case.)  And with this research, plus the further testing , she felt the much more likely diagnosis was HP for me. This was a good thing. I think?

~ To be continued~

Gratuitous cuteness: Pal, in one of his rare moment of stillness (to be fair, he’s a doll in the house, calm and easy – it’s just outside that he runs and runs).  Note the gash under his eye, where he ran into a lone fencepost during a case of the zoomies.  He’s normally super agile, but it was dusk, and the fencepost is a leftover from fencing my vegetable garden  – ow! Heart this little guy!

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.