Episode 52: Down the Rabbit Hole: Will I Finally Get a Diagnosis for My Breathing Difficulties?

Worshipping air again, tonight. Holy, sacred, life-bestowing air. Never take it for granted. Yes, I've written on this very topic with some of the very same evidence before, but lack of air tends to become an all-pervasive problem. Air, sports fans, is kind of important.

Photo by Lisa Sheirer
Used with permission

Today I had a horrendous deep, barking coughing fit after I laughed real hard at something Honey said, and I've been coughing and barking since.

I'm wondering now whether this might be the clue that finally makes my pulmonologist believe me when I say how quickly I run out of breath when merely taking a walk or walking up a flight of stairs.

As I've said again and again, this is the most frustrating part of being a patient. My pulmonologist doesn't believe me when I tell him about these symptoms.

Why do I think this?

First, he ordered a six-minute walk test. As the two of us walked, I told the technician that my oxygen saturation would probably be just fine when we stopped at the end of six minutes, but if we waited a minute or two, it would drop. I knew this based on my own observations about the effect of exercise on my ability to breathe.

"That's not how the test works," the tech told me. She measured my saturation just after the six minutes, and it registered 100 percent, and that was the end of it.  After that I sat down and clipped on my own oximeter, and within a couple of minutes, my saturation had dropped to 82 percent. But no one cared about that.

That's not how the test works.

Well, guess what? That's how my lungs DON'T work, and that's why I'm in that office spending medical dollars so I might have some kind of a chance for a life if this thing can be treated.

Fast forward to next visit. I again tell the doc about these symptoms.  Sports fans, these are the very first symptoms that started my recent fall down the rabbit hole of today's health care system. They became debilitating during a trip to Europe during Christmas 2012-New Year's 2013.  I had absolutely zero stamina on that trip for stairs, for walking, for doing anything at all.

It's now a full two years later, and while I've been diagnosed with quite a few things since them--cardiomyopathy, sleep apnea, idiopathic hypersomnolence, kidney disease, and degenerative brain/muscular disease--I think that's it--no one has yet explained this lack of oxygen on the slightest exertion. This isn't just fatigue, which would be expected given all my diagnoses.  This is a very specific reaction to exercise or, to be more accurate, exertion, since even brushing my hair can wear me out.

The first time it happened was well over a decade ago, when my sister and I tackled Mt. Baldy, a mountain in California near our aunt's retirement home.  We took a ski lift up most of the way and were supposed to then take an easy trek across the ridge to the apex at 10,000 feet. We had started at sea level, since we were close to the Pacific Ocean at the base of the mountain, so that's a pretty fast elevation change.

My sister is seven years older than I, and she was trucking along, but my body stopped itself flat and told me, "You ain't taking another step, Girlfriend."  I had to stop numerous times, and starting up again was pure hell.  I finally made it to the apex, but I knew what I'd experienced made no sense, given my then-young age and seemingly good health.

The problem now is that it's happening without shooting up to 10,000 feet in an hour or two.  I also have a history that includes coughing up blood resulting in a bronchitis diagnosis, a bout of pneumonia, and a diagnosis of reactive airway disease a few years ago. And, as I've said a thousand times, there's that damned polycythemia that still shows up in all my lab tests, and the most basic cause for that is a lack of oxygen in the system.

So, back to my trusty medical librarian skills--maybe this severe cough after laughing,which has been happening to me for some time now, will indicate the cause of the problem.

And I think, perhaps, I've found it:  exercise-induced bronchoconstriction. In other words, after exerting oneself, a patient with this problem has trouble breathing because the bronchial tubes, the same culprits in bronchitis, narrow to a potentially dangerous degree. The problem is common in asthma sufferers, but it can also occur in people without any history of asthma.

And laughter, it turns out, affects those bronchii the same way--it is considered a trigger as strong as exercise.

For more on this condition, read about it in this 2011 article from American Family Physician.

I just pray that when I see Dr. P, as I'll call him, this coming Wednesday, this new observation will make him take me seriously.  But I think I may have already told him about this symptom, as I told you, Dear Viewer, in an earlier blog.  I had a major coughing fit while watching a silly scene in an Ace Ventura flick, and that ended with my coughing up about a cup of phlegm. Dr. P. didn't seem to care about that, either. 

During my last appointment, I told Dr. P what had happened with the six-minute test, so he told me to get up and follow him.  He then had me walk up a short flight of stairs in his office building and clipped an oximeter on my finger. His tech again took the measurement and, as I could have told them, of course--no decrease in oxygen saturation.

Well, no duh!  The office building was as cold as ice, and I"ve noticed that heat makes the problem much, much worse. Not only that, I'd just gone to the office after a night on my CPAP--the appointment was first thing in the morning. My symptoms aren't constant, but they are frequent.  And they get worse as the day goes on. The more I do, the worse they get.  It's a cumulative thing.

I tried to explain that to Dr. P, who told me, "If it doesn't happen here in the office, it doesn't happen at all."

I understand doctors need objective evidence. But if a patient consistently complains about a symptom, doing one or two tests that reveal nothing should not be the end of it.  In reading about this condition, I learned that recommended tests include spirometry with and without exertion.  I've had it without exertion twice, but never have I been given that lung test with or after exertion.

And, one of the characteristics of exercise-induced bronchoconstriction is that it happens during or after exertion. So why does the protocol for a six-minute walking test have the oxygen saturation taken ONLY immediately after the end of the six minutes?  What about those of us whose oxygen depletes shortly after that?

"Typical symptoms of EIB include wheezing, shortness of breath, dyspnea, cough, or chest tightness during or after exercise. These symptoms usually occur during strenuous exercise and peak about five to 10 minutes after exercise," state Krafczyk and Asplund in the aforementioned article.

So why would a six-minute walking test NOT check for lack of oxygen for several minutes after the walking ends?

Honestly, I don't frickin' understand what a person has to do to get adequate diagnosis and treatment in this Rabbit Hole known as the U.S. Health Care System.

The cardiologist overseeing my last cardiac stress test told me my heart had performed just fine, "but something is going on with your oxygen." By the end of the test, I was hanging on for dear life; my legs felt as if they were going to give out from under me.

Legs can't run without air.

But nothing about my oxygen, or lack thereof, appeared on the doctor's report of the stress test because, of course, the test was all about my heart function. Well, hello, the two are utterly connected, so why is this?

Even my new physician, whom I'd had high hopes for, told me when I expressed this problem--and that fact that my own oximeter, which my ENT had told me to get when my oxygen was low in his office, drops into the 80th percentile on mild exertion:  "Maybe your oximeter is broken."

I want to scream.  I want to fricking scream.

Maybe there's nothing the doctors can do for my breathing problem, but the frustration of their not taking me seriously and not investigating the problem properly so they and I can know why this is happening to me is driving me absolutely crazy.

I had almost made up my mind that I wouldn't even bother mentioning this problem again this time. It's so discouraging to be made to feel as if I'm making the shit up. But now with this horrendous coughing, I have something else to bring to him. And he'd better take it seriously this time, or I might have to do something desperate. Like write an article and send it to the local paper about the frustration of my quest and the lack of care I'm getting. Don't want to do that. Just want my doctor to do what he's supposed to do.

Remember how excited I was when I was going to see the neuromuscular specialist at Hopkins, who I'd hoped would take my neuro symptoms seriously and give me a DNA test for myotonic dystrophy?  Remember how utterly disinterested and cold she was to me that day, and how disappointing that encounter ended up?

I fear that will happen again this Wednesday.  Going to the doctor shouldn't have to feel like you're about to enter into a battle, but that's exactly how it feels.

"Patients with atypical exertional complaints require careful clinical and physiologic evaluation," says American Journal of Respiratory and Critical Care Medicine authors McFadden and Zawadski.

So why haven't my complaints been carefully evaluated?

A couple of aspects of EID that don't exactly match my situation are that it normally occurs with strenuous exercise, and I haven't been able to do strenuous exercise for a long time. It also occurs tends to occur with "physically active" persons, notably athletes, and I haven't been physically active, much less an athlete, in quite a long time. I've had to give up hiking and bicycle riding. Hell, I've had to give up walking. I've had to give up evenings out with my friends. I've had to give up sex, on a far too frequent basis. I've given up showering and grooming most days. I've given up cooking for myself most days. Every frickin' thing I do exhausts me and leaves me out of breath.

Have I used the word "frickin'" enough times yet? Hey, I'm mad. I'm trying to keep it clean, though.

Certainly I was being physically active when climbing Mt. Baldy those 15 or so years ago. And I first noticed the severity of my symptoms while forced to be physically active during my trip to Europe in 2012, since I had to walk a lot and use stairs in buildings with no elevators. Now, my problems occur with the mildest of exertions, but perhaps that's because the condition has progressed (or regressed) to this debilitating state.

Another problem with the diagnosis is that cold air is known to induce an attack. I, on the other hand, find that hot weather brings on my breathing difficulties much more than cold weather does; however, I do not spend much time in cold weather and certainly don't exercise during cold weather, so I can't really say whether this would affect my breathing or not. The brief trip up the short flight of stairs in the air-conditioning at Dr. P's office wouldn't have induced anything because of the brevity of the test--it was a silly, non-test in my view.

Yes, I'd said that I get out of breath when climbing stairs, but I was talking about the steep, long flight of stairs in the Victorian-era building in which I'd worked at the time. The little flight of wide steps Dr. P tested me on was no comparison.

Krafczyk and Asplund also note that "Self-reported symptoms have been shown to be poor predictors of EIB because other conditions, such as vocal cord dysfunction, can cause similar symptoms. Therefore, symptoms alone should not be used to diagnose EIB."

Okay. I buy that. So give me the right damned test to figure out what the hell is going on--especially since the symptoms can be treated. I would dearly like to do a few things without having to give up in exhaustion because I can't breathe. I'm tired of waiting around for the doctors to believe me enough to give me the right tests.

Let's hope this time, this Wednesday's appointment, things go a little better, and answers are forthcoming. That's all I want. Frickin' answers. What else are my medical dollars paying for? It's like a bad student's being passed from grade to grade. I'm a patient being passed from appointment to appointment. Problem student, problem patient--What's the strategy? Give up on them! Teachers and doctors who do that don't deserve the salaries they draw, in my humble opinion.

I don't want to have to dread my doctor's appointment, but that's exactly what I feel. Dread. And yet I want those answers, so go I will, and do battle I will, if necessary. My quality of life, and my very life, depend on it.

Meanwhile, we just had a snowstorm, and it's bitter cold out. Maybe I'll do a little six-minute walk tomorrow and record the results with my oximeter, taking a photo of those results. Sounds like a good idea to me. But will Dr. P buy it, even then? Most likely he'll just think it's another example of my "obsession" with my health.

Damn straight, I'm obsessed. Anyone would be, if he or she could not breathe properly and could not do much of anything, anywhere, any time. It's miserable.

And I'm damned sick of it all--being sick and exhausted and out of breath and stuck in the U.S. health care system of today, the Rabbit Hole where nothing makes sense. The Rabbit Hole I find myself in today. The Rabbit Hole whose passageways are constricting, tightening, and burying me alive.

___________________

REFERENCES

Krafczyk, Michael A., and Chad A. Asplund. 2011. "Exercise-Induced Bronchoconstriction: Diagnosis and Management." American Family Physician 84(4):427-434.

Parsons, J.P., et al. 2012. "An Official American Thoracic Society Clinical Practice Guideline: Exercise-induced Bronchoconstriction." American Thoracic Society Documents: 1016-1027.

Episode 51: Nature Notes, OR Close Encounters of the Critter Kind

Before his death, biologist Ken Hogsdon published a column in our local newspaper titled "Nature Notes."  I was told when I moved here not to bother subscribing to the paper because it was just a rag for the Good Old Boy Network that ran things around here in those days--and still does, for the most part, which is one reason our biggest "city" was recently named the 6th poorest in the nation.

However, the paper was worth it back in those days because of Hogsdon's charming "Notes." My title is in homage to this man who told stories of his daily, mostly backyard encounters with the region's wildlife.

In that vein, and in an effort to get away from depressing stories about my health, or lack thereof, I am now sharing my own "Nature Notes." Actually, a couple of earlier episodes also shared some "Nature Notes":  Episode 10: Happy Halloween With Some Creepy Plants and Critters, most notably.  (Depending on copyright, I hope to add some of Hodgson's own columns to the show, since I can't find anything about him or written by him on the Internet; his death predated the Web.)

The Cottage

I live in a "cottage," as I like to call it, on the edge of a hardwood forest in Appalachia. My small plot--a mere .6 acres--has several microenvironments: first, the aforesaid forest filled with American basswood, sugar maple, and black oak with a smattering of other species including shagbark hickory.

Beneath the trees grow magical species including Jack-in-the-Pulpit, May apple, trillium, several types of ferns, mosses, and more.

A second environment is what I refer to as my "meadow"--a strip of land along the edge of the forest behind the cottage that is the sunniest location in my yard. My place lies cradled in the side of Big Savage Mountain, which looms to the west and, therefore, blocks most sunlight by 4 p.m. or so even in the summer. This little strip of land holds onto the daylight longer than any other. In the meadow are several types of goldenrod, asters, mugwort, wild phlox, dame's rocket, asters, and more.

Finally, my yard proper makes up the third microenvironment. Actually, my yard isn't so proper: I am slowly allowing low-growing "weeds" (I prefer to call them "wonders") to take over the grass in the hope that someday my lawn will no longer need mowing. Aren't the heart-shaped leaves and happy purple faces of violets preferable to a bunch of straight, boring blades of grass?

Many of my wildlife encounters have taken place on my property, while others occurred in the surrounding beautiful, mountainous terrain.

Here are a few stories to begin this "series."

The Earth Moved

Outside my back door is a concrete slab I hope to someday make into a flagstone patio. I often leave items such as flowerpots needing planting back there. One summer evening I came home with some new flowers, so I chose a fairly large terracotta pot filled with dry soil as their home. I carried in the pot and put it in the sink, turned on the faucet, and walked away since I knew the hard soil would need a good soaking

From across the room, however, I glanced over at the flowerpot and, to my shock and momentary horror, the soil began to GROW.  The dirt rose up in a large lump, and my heart stopped as my brain tried to process what the heck was going on. The soil began to shape itself into a sloped head with eyes blinking.

And then I realized what I was seeing--a toad, who had made his home in this warm little pot of earth, had experienced his own rude awakening, and he also wanted to know what was going on! He looked like the biggest toad on earth, all covered in soil, as I sprang across the room and gently covered the flowerpot with a saucer and took my new friend back outside--whereupon he quickly vacated what must have seemed like the ideal place to hang out. At night, my porch light would have attracted to his lair all the tasty morsels he could eat!

Had I known of this squatter, I would have happily allowed him the real estate rather than ungraciously evicting him in favor of a mere flower.

Tiny Ring-Neck Snake

Other objects end up on that concrete slab, and one day I picked up a piece of wood I'd placed there for some reason, and beneath it was the tiniest snake I'd ever seen.  I hadn't even known snakes came that small!

This one was about two inches long and very slender, all black, other than a bright yellow ring where its neck might be said to be. This was a hatchling of a fairly common type of snake in the area, the Northern Ringneck Snake (Diadophis punctatus), though I didn't know that at the time.

No, this isn't my hand--
Photo from the Savannah River Ecology Laboratory

For all its evils, the Internet sure is a wonderful innovation. Anything that piques my curiosity can easily be answered with a few choice search words. In this case, "ring" and "neck" and "snake." Can't get easier than that!

Green Greetings

Admittedly, my threshold for thrilling surprises may be low, but I'll take these little green surprises--each of them found on rocky ledges--over a surprise mink coat any day.

The first happened many moons ago when my two boys and I began exploring our new environment after moving from Washington, DC, to Appalachia. At the time, J., my older son, was about ten years old and had bought a book on West Virginia at the local bookstore, after which he hounded me to visit all the wild, wonderful places in that closely neighboring state. Well, "hounded" is probably too strong a word--it didn't take much encouragement at all!

That's how we ended up numerous times at the rather amazing Dolly Sods Wilderness, an apparent remnant of the Ice Age when glaciers covered this part of our country. The vegetation is characteristic of much more northern (as in northern Canadian) terrain and includes sphagnum bogs and heaths on its rocky mountaintop--not to mention a bounty of blueberry bushes, as we found one fall when they were bursting with fruit. Son J. was also fascinated with the area's "flag-form trees"--trees with branches growing only on one side due to the intensity of winter winds on the boulder-strewn mountaintop.

Dolly Sods Wilderness at Bear Rocks - Photo from Nature Conservancy

The strange name, according to Wilderness.net, is for the Dalhe family who "used the open grassy fields called 'sods' for grazing sheep in this area." Even stranger are the signs on all the trails warning that the area was a pre-World War II training area--and if a hiker were to find a stray mortar round in the "wilderness," he or she should leave it alone since it could still be live! Talk about cognitive dissonance!

105-mm Howitzer round found at Dolly Sods--
Gee, what a symbol for the masculine nature of war!
Photo from West Virginia Highland Voice

Meanwhile, younger son A., who loved to complain about hiking, nevertheless had a great time jumping from rock to rock in a heart-stopping manner whenever we arrived at outcroppings. After one of his treks to the edge of the Dolly Sods plateau, he came running back for me, calling out, "Come here! Look what I found!"

So I followed him down a few boulder stairs and looked where he was pointing--and there, curled happily on a miniature cave-like rock ledge, was a Smooth Greensnake (Opheodrys vernalis) in all its emerald glory. Again, I'd had no idea snakes came like this!

Photo of Smooth Greensnake from Maryland's Department of Natural Resources

A couple of decades later (sigh--really?) a similar green encounter greeted me most unexpectedly. This time, I was in a canoe, resting with a beer as my Honey paddled us around the Savage River Dam, a reservoir surrounded by the Savage River State Forest, a setting not unlike, I imagine, the Scottish lochs my Honey's and my ancestors enjoyed.

We floated along a shore bounded by a wall of rock--a wall with plenty of crevices and ledges for other creatures wanting to enjoy the fine day and the lovely body of water--including, in one, a small, brilliantly green frog! 

Tonight I searched Maryland's Department of Natural Resources site to try to figure out what these species might be, which is how I identified the Smooth Greensnake (there's also a Rough Greensnake but it does not live in our neck of the woods, while the smooth one does).

The only bright green frog I could find is the Green Treefrog (Hyla cinera), and its description fits our sighting: Their habitat includes "Swamps, borders of lakes and streams, floating vegetation . . . ." This little guy was indeed on the border of the lake, perched happily on his little balcony where he, no doubt, waited for flying insects to try to pass by.

Photo of Green Treefrog from Maryland Department of Natural Resources

Swimming Salamanders

The frog-occupied rock ledge holds back a finger of land that, on its other side, has a rocky beach easy to "land" on with our canoe.  Last summer, Honey and I pulled up on the beach and walked over to the other side where we sat on the ledge and enjoyed the view.

"Remember that green frog we saw?" I said--we'd seen it on one of our first canoe voyages on the Dam, as we call it--probably some nine years ago, back when our relationship was tenuous and I never imagined I'd be back there with him nearly a decade later.

In fact, he is another reason the local newspaper was worth reading back then--he was the editorial page editor ten years ago; I wrote a letter to the editor; and the rest is History. Actually, so is his job at the paper, because that Good Old Boy Network didn't like the politics in his columns and, in an affront to journalistic integrity everywhere, told him to pack up and leave after fourteen unblemished years of employment. Needless to say, I don't read that rag anymore.

BUT I digress. Back to happier topics:

I looked over the ledge and, to my surprise, saw a populous little world I'd had no idea of--dozens of salamanders swimming around, and even a few that had ventured onto the hard, rocky ledge where we sat! I hadn't noticed the ones on land because they were so well camouflaged. The place seemed a harsh landing spot for salamanders, as it was covered with nothing but red dirt and small pebbles, but perhaps they, like the green frog, also pulled up into the shaded rock crevices below when they needed a rest.

No hope in identifying what they might have been from memory, as many species of salamanders live in our region, and these were brown and nondescript, as many of them are. They may well have been the adult version of our newt Ethel, an Eastern Red-Spotted Newt (Notophthalmus viridescens) who is in her terrestrial juvenile stage, known as "eft."

Ethel, our Eastern Red-Spotted Newt Eft, in her Florida room,
actually an intact old French's mustard jar we found in the woods

More Ethel

I found Ethel, and her now-deceased mate Fred, in my yard after a spring rain, like orange jewels among the brown leaf litter. Actually, efts are neither male nor female; newts do not become sexual beings until their adult, mostly aquatic (and mostly brown) stage.

Next summer, I'm going back to that ledge with a field guide in tow, and maybe I'll be able to figure out what species lives so thickly in that little part of the lake.

One thing I do know--they weren't hellbenders! Hellbenders are endangered and huge (for a salamander); in fact, they're known as giant salamanders, and the few that are left live in Appalachian streams near us. Now, that would be a sighting, and I haven't given up on seeing one yet.

Adult Eastern hellbender, photo from Maryland Department of Natural Resources

In the meantime, I'll just enjoy a giant burrito at Hellbender's Cafe in Davis, West Virginia, another "find" when the kids and I used to explore the state! Now, THOSE are monsters!

GREAT big burritos at Hellbender's in Davis, West Virginia

More Nature Notes to come!