Mo Bloggin'

A little o' this, a little o' that

Archive for the tag “antigen testing”

Hypersensitivity pneumonitis – lung thing part 3

20160914_085247

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).

20160911_160804

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).

20160909_190753

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.

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!

img_20160916_210904

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.

20160909_190719

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.img1041Gratuitous 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.

Health update on the lung thing {zzzzzzz}

20160722_190306

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.

20160717_172214

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.

20160729_191448

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.

20160716_165931

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.

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.

20160711_201107

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.

20160616_191131

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!

20160717_134744

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.

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~

20160722_215156

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!

Post Navigation

The First Ten Words by Rich Larson

Because a guy has to keep his chops sharp

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. He is now Director of the Center for the Neural Mind & Society (cnms.berkeley.edu).

valbjerke's Blog

Real Life Random Ramblings

psychologistmimi

Food, Road Trips & Notes from the Non-Profit Underground

Citizens for Duvall

A grass roots group that gives a voice to its citizens outside of city council meetings.

Pet Zoo Kibbutz Shiller

Adventures of a pet zoo keeper

camino times two

walking together from Le Puy to Finisterre

Trish the Dish

Keeping Our Family's Bellies FULL... One Dish at a Time

KURT★BRINDLEY

WRITER★EDITER★PRODUCER★CONSULTANT

Hen Corner

A little bit of country life in West London...

morrisbrookfarm

Going back...a return to rural life

Relaena's Travels

Eternal Journeys of a Curious Mind

The Global Warmers

8 dogs, 2 elderly adults and an aging RV

Fiber Trek ™

A TV show Connecting Community, Craft, Fiber and Farms

Brookfield Farm Bees & Honey Blog

musings on bees, life, & nature near Mt. Baker Washington

An American Editor

Commentary on Books, eBooks, and Editorial Matters

The Task at Hand

A Writer's On-Going Search for Just the Right Words

ella gordon

textile maker

Jenny Bruso

An Unlikely Hiker Blog

The Daily Post

The Art and Craft of Blogging

Squash Practice

A Growing Concern

Food, Farming and Faith in Snohomish County

Icelandic Fiber Farming in Cascadia

Carol Lea Benjamin on Dogs

Understanding dogs and the many roles they play in our lives

Mo Bloggin'

A little o' this, a little o' that

Living Your Sacred Livelihood

Weaving the Wisdom in Nature with Possibility Practices

Chris Morgan's Wildnotes

A BLOG of pictures and thoughts from the field

Denise Fenzi

a professional dog trainer specializing in relationship-building in competitive dog sport teams

thekitchensgarden

farming, gardens, cows, goats, chickens, food, organic, sustainable, photography,

Black Sheep Creamery

Artisan Sheep Cheese, Wool and Lambs

Woolyadventures's Blog

Just another WordPress.com site

flippity felts

Curious and Quirky needle felts from deepest darkest Devon

Single Life, With Puppy

Suddenly single at 55; what to do but get a puppy?

Eat, Play, Love

making memories through food, wine and travel

Pam Grout

#1 New York Times best-selling author

Karen Maezen Miller's Cheerio Road

A little o' this, a little o' that

CATHERINE RYAN HOWARD

She turns coffee into books so she can afford to buy more coffee. And more books.

Lorelle on WordPress

utorials about WordPress, blogging, social media, and having your say on the web.

Adventures in Natural Beekeeping

Bees, Hives, Swarms, and Everything under the Sun

CARROT QUINN

dispatches from the wild

The KiltLander's Blog

JP's Outlander Recaps and other perspectives from the Dirk Side

Great Scot!

Cultural Musings of An Outlandish Nature