Mo Bloggin'

A little o' this, a little o' that

Health update on the lung thing {zzzzzzz}

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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.

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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.

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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.

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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.

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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.

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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!

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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~

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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!

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11 thoughts on “Health update on the lung thing {zzzzzzz}

  1. Thanks for the update, I was wondering but hated to bring it up.

    • mcfwriter on said:

      I have had this in the queue for a month or more, Bliss. And all my enthusiasm for the books and research…well, the stack beside the bed is just as tall, maybe taller, as I enjoy the summer “beach reads” instead. I’m hoping to at least list some of the books in Part II. I am definitely not back to 100%, so I need to get back to the stack. XO Maureen

  2. so glad to hear that you’ve finally found a good doctor! what a relief to have someone who is actually trying to help solve the problem. Also Daisy is so cute in the sheep chair- actually looks pretty comfy 🙂

    • mcfwriter on said:

      Thanks, Denise! Yes, I am very happy I kept looking. Never having been sick before I just didn’t know any better, and then, when you are sick, you just don’t have the stamina to “fight” the system. Daisy was good in the chair – much better than the sheep it turned out. They barely dented the netting and were squirming and struggling the whole time. But they got done!

  3. So glad to hear you have a good doctor who actually cares and is listening to you. I hope you get an accurate diagnosis and correct treatment plan that includes being able to have sheep 😉

    • mcfwriter on said:

      Thanks, Donna! I am very happy to have found her and the Interstitial Lung Disease clinic at the UW. I’m religious about wearing my fancy respirator mask whenever I feed the sheep hay or grain, and really take precautions to protect my lungs. I am determined!

  4. This is particularly interesting to me since I believe you know I have been dealing with Löfgren’s Syndrome, a type of sarcoidosis, for three years now. Having a doctor who really listens to you, and in fact thinks about you and your case even when you aren’t in front of him or her in the room, is the best thing in the world. It should be common but it’s so very uncommon. I have a great doctor team, but it leaves me with a rather hopeless dilemma: do I move where I want to live all my life and always feel healthier when I visit (the UK seacoast), or stay where I know I have a great team of doctors but I believe the environment itself helps me stay sick?

    • mcfwriter on said:

      I think we both know the answer to that one, Dixie. I’d be researching docs in the UK, for sure. But of course we both know that the mind-body connection in all of this is HUGE. I’ve done a fair amount of reading on it all and truly believe that not only do we “make ourselves sick” with thoughts and beliefs, we can also make ourselves well with the same. Of course, turning things around and fighting the familial, cultural, and personal beliefs is much, much easier said than done. {yes, I know what a gargantuan understatement this is} But being happy and loving life/where you live is probably the best medicine there is, right before laughter. And if you always feel healthier on the UK seacoast, I’d say that’s where you need to be. Yes, finding a good doctor is golden, but we know even the best of them can only treat these conditions, not cure them.

  5. So happy to read this! Can’t wait for the continuation!

    • mcfwriter on said:

      Thanks, Michelle! It’s been a long road, but I feel like I’m finally getting somewhere on it. Hope to get the next installment together in the next few days.

  6. Pingback: No birdz allowed – lung stuff part deux | Mo Bloggin'

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