Breathing Trouble

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New Year’s Day 2007: I am skating with my family at Sacramento’s Westfield Downtown Plaza Ice Rink. Threading my way among the holiday crowd, I complete exactly one revolution before lurching toward the perimeter in surprise.

I can’t catch my breath.

My world at this moment constricts to a tunnel as I clutch the wall for support. The colorful scarves of passing skaters fade to gray. Their laughter and chatter attenuate to a hum, then . . . nothing.

But only for an instant. I don’t fall. Instead I slump, intent on stabilizing my breathing, as the colors and noise crescendo to their full vibrancy and the tunnel spits me out.

Nobody seems to have noticed and I shake it off, enjoying the rest of the afternoon with my kids. Still, I resolve to make an appointment with my family physician the next morning. It’s probably nothing, I tell myself, but it won’t hurt to check it out.

OK, some things you should know about me: This kind of thing never happens to me. I am (was) a healthy 42-year-old woman, mother of two active boys, erstwhile high school track and cross-country medalist, marathon finisher, nonsmoker and conscientious waistline watcher. If I’d complained during recent morning runs that I did more walking than running, or that I couldn’t ascend a flight of stairs without puffing, well, that was probably just middle age rearing its turkey-wattled, bleach-blond head. Or smog. (Everybody and their dog develop breathing problems in this filthy valley air, don’t they?) Or allergies. Or even, God forbid, toxic fumes from the deposits of pigeon poop on our roof as had been speculated by my solicitous, if wildly imaginative, dear old dad.

Through the rosy lens of my health history, this anomaly, this episode at the ice rink, begins to take shape as something to be viewed less with fear than with irritation and disgust: one more betrayal by my body not unlike cellulite or age spots. (To be done in by pigeon poop&emdash;oh, the disgrace!)

My visit to the doctor produces few answers. She cannot definitively pinpoint the cause of my shortness of breath; it’s a vague symptom that could implicate any one of dozens of conditions both serious and benign. The only thing to do is order some tests: an EKG, a treadmill test, a pulmonary function test.

Fast-forward a couple of months after the results are in. There are no red flags. We still don’t know what’s wrong. The summary of the pulmonary function test reads, Very mild obstructive airway manifested by decrease in the mid flow. There is improvement after bronchodilator. Diffusion capacity is normal.

My doctor interprets this to mean that I suffer from exercise-induced asthma. She prescribes Proventil HFA inhalation aerosol to be taken 30 minutes before exercise.

You’re probably not holding the inhaler correctly. Didn’t you read the instructions? scolds my husband, Mike, after my umpteenth complaint that this asthma stuff my doctor prescribed doesn’t seem to be working.

It gets worse. It’s the end of February now, and I can barely drag myself across the parking lot to register my older son for his freshman year of high school, let alone care what classes he should be taking. I’m not in any real pain, just extremely fatigued, unable to draw a decent breath. For about a week now, I haven’t been able to cross the room to answer the phone without gasping like some kind of prey on the run.

I call my doctor to ask for a referral to a pulmonary specialist. The specialist’s office informs me two days later that the earliest available appointment is in two months.

I have an ominous feeling that I can’t wait that long. My irritation has been replaced by a growing sense of unease. Whatever I have, it can’t be asthma.

The first Friday night in March: Mike and I are watching a basketball game on TV. I go upstairs to go to the bathroom.

All I remember is the sound of my head hitting the wall of the bathroom on the way down. I wake up to an angry buzzing, with no idea how long I’d been out (a minute? an hour?), blinking stupidly at the wallpaper.

Is this what heaven looks like?

Then: Oh, crap. I’ve wet my pants.  

I quietly change my jeans, hobble back downstairs and continue watching the game. It doesn’t occur to me to call the doctor. I think maybe I know why.

If I continue to deny it, nothing is really wrong.

On Sunday morning I pass out again, this time on the bed, next to Mike, after getting up to brush my teeth.

. . . 911. I catch snippets of Mike’s voice in the hallway as I regain consciousness. . . . seizure. He’s talking to our two sons ages 13 and 11.
The paramedics arrive. By now I am sweating, terrified but fully lucid, protesting the need for any intervention whatsoever. I’m a busy mom and writer. I’ve got deadlines and carpools and grocery lists. I don’t have time for this.

I don a brave mask.

If I’d known all these men were going to be in my bedroom, I croak, I’d have put on some makeup.

Everybody laughs.

But they are not fooled.

I arrive by ambulance at Mercy General Hospital. With the poking, prodding, peeing and diagnostic imaging come the questions&emdash;so many questions.

Only one really matters, although I am not yet aware of its significance.

What medications are you taking? asks an ER nurse.

No medications, just birth-control pills, I reply, absurdly proud to be such an uncomplicated case.

An undetermined amount of time later, we have a diagnosis: A CT scan of my chest reveals extensive bilateral pulmonary emboli, or PE, and an echocardiogram has found the right pulmonary artery pressure in excess of 100mmHg&emdash;almost triple the norm.

In plain English: multiple blood clots in both lungs, rendering the right side of my heart (the side that pumps blood into the lungs) tremendously strained and in acute danger of failing.

As horrible as this sounds, I am reassured that I am in the best possible place. Although PE is frequently fatal, prompt treatment dramatically increases the chance for survival.

Hmm, I remark numbly, ostensibly absorbing the news but in reality not grasping the situation at all. I realize I sound ridiculous, that I react more strongly than this when the cat sheds on the sofa. This simply isn’t real to me. There must be some mistake.

Following the diagnosis, I am transported, family in tow, to a room in the ICU, where I meet Dr. G.H. Hayat, a pulmonary specialist. He explains how a clot (thrombus) forms in the deep veins of the legs and travels to the pulmonary arteries (where it becomes known as an embolism), causing blockage. He says the most likely cause of emboli in my particular case is birth-control pills, which contain the female hormone estrogen, known to increase the amount of clotting factors in the blood, especially if you smoke or are overweight. I’d always known this, of course (I do read the fine print), but since I’d never smoked and wasn’t overweight I assumed I could take The Pill indefinitely. It turns out, however, that the Desogen I’ve been on for more than a decade is a third-generation contraceptive, which carries twice the risk of clotting as the older low-dose contraceptive pill.

Dr. Hayat decides to begin treatment with heparin and warfarin, both anticoagulants. Should my condition fail to improve after a few days, he prepares me for another, more drastic alternative: thromboendarterectomy. This would entail transportation to UC San Diego Medical Center, a pioneering world leader in this rare and delicate eight-hour operation in which the chest is cracked open, the patient is attached to a heart-lung bypass machine and the body cooled to 68 degrees Fahrenheit for the purpose of surgically extracting clots from arterial walls.

I close my eyes as if to shut out the image of myself on an operating table, for all intents and purposes, clinically dead.

None of this is under my control, of course, but I know what I have to do. I decide here and now, if it is possible to decide such a thing, that surgery won’t be necessary. If I’m going to San Diego, it’ll be to the beach.

Context.

Context is everything.

On the face of it, a brush with death seems inherently bad, something to be avoided at all costs. Yet my week at Mercy General turns out to be strangely magical, and I come out the other side marveling at the unseen forces that plucked me from a life on autopilot and set me on a course of awestruck discovery.

As I lie in the ICU, I know there are trials ahead. But I am a person of faith, which has grown deeper in recent years, and now is the time to test it. I pray for well-being, not hoping it’ll happen but believing I have already received it.

Quality of thought is key. I won’t feed thoughts that don’t serve me because I don’t want them to grow. I will not think about the fact that my condition for so long went misdiagnosed or that my parents, who are vacationing in Florida, aren’t rushing to my bedside, having decided to postpone a trip to Sacramento until my surgery, which Dr. Hayat says could occur by the end of the week.

I will not be afraid.

Yet if I think mental discipline alone is enough to save me, I know nothing about the power of love.

And so, context.

My wisecracking husband and sons spend hours at my bedside every day saying things they know will make me and the nurses laugh. (Such as the story of my son’s teacher, who upon learning I’d been hospitalized took it upon herself to e-mail Mike instructions on how to do laundry. She needn’t have worried; he’s a modern man.)

The blessings keep pouring in.

Gigantic bouquets arrive one after the other, jostling for space on the counter.

Phone calls from far-flung relatives and a couple I’d met in Paris keep my mind off the IV in my arm and the oxygen tubes in my nose.

My girlfriends come bearing gifts of lipstick, chocolate, and inspirational totems and tomes.
People from my church bring Bibles and pray.

We talk. We laugh. We cry. My hair is greasy and I’ve never gone this long without mascara, but that doesn’t matter. I am enveloped by so much love&emdash;more than I think I deserve. I truly am amazed to behold the faces and voices, feel the squeeze of a warm hand, when it would be so much easier for these people to claim good intentions and fumble for excuses. Or not bother at all. It’s an extraordinary gift in an unlikely package. 

They’re showing me how to do life right, I remember thinking.

By midweek, I am moved out of the ICU to another floor. My only pain is in my stomach from laughing too hard. Another echocardiogram two days later reveals a significant reduction of pulmonary hypertension&emdash;so much so that we can table the idea of surgery for now and I can go home.

Thank you, God.

One year later: I’ve had two more echocardiograms on an outpatient basis, and the last one revealed that I’m nearly back to normal. Surgery will not be necessary. The clots have gradually dissolved. In October I will go off the warfarin. I’ve stopped taking birth-control pills. I am exercising again.
My parents fly in from Minnesota to stay for two weeks and dote. Mike and I spend a week in Hawaii.

I’d like to say, now that this is behind me, that I live with more intensity, more appreciation, and at times I do, but the truth is I act pretty much the way I always did.

Perhaps I’m more aware of small opportunities to do life right, to just be there for the sake of someone else’s context.

I am a busy mom and writer. And I do have time for that.     

Popping The Pill? Read This

Oral contraceptives help millions of women prevent unwanted pregnancies. But as with all medications, taking The Pill carries some risk, including an increased incidence of nonfatal venous thromboembolism, or blood clots.

The average annual risk of nonfatal venous thromboembolism is about:

• 4 cases per 100,000 in healthy women who are not pregnant and not taking hormones

• 10–15 per 100,000 for women taking older low-dose oral contraceptives

• 20–30 per 100,000 for women taking desogestrel- and gestodene-containing products, also known as second- and third-generation contraceptives

• 60 per 100,000 for pregnant women

Desogestrel is marketed in the United States as Desogen by Organon Inc. and as Ortho-Cept by Ortho-McNeil Pharmaceutical. These products currently represent about 15 percent of the American oral contraceptive market.

Source: U.S. Food and Drug Administration

PE Facts

•  Pulmonary embolism, or PE&emdash;blood clots in the arteries of the lungs&emdash;is the third most common cause of death in the United States, with at least 650,000 cases occurring annually. It is the first or second most common cause of unexpected death in most age groups.

• Although prompt diagnosis and treatment can dramatically reduce the mortality rate of PE, the diagnosis is often missed because of vague and nonspecific symptoms. Untreated, approximately one-third of patients who survive an initial PE die of a future embolic episode.

• The highest incidence of recognized PE occurs in hospitalized patients. Autopsy results show that as many as 60 percent of patients dying in the hospital have had a PE, but the diagnosis has been missed in about 70 percent of the cases.

• Factors known to increase the risk of PE include surgery (especially hip and knee replacement), body trauma, prolonged inactivity (such as bed rest or long car or plane trips), oral contraceptives and hormone replacement therapy, cancer and cancer treatments, and certain medical conditions like cardiovascular disease or stroke. Obesity, smoking and high blood pressure are risk factors for PE in women.

• Symptoms that should provoke a suspicion of PE include chest pain, chest wall tenderness, back pain, shoulder pain, upper abdominal pain, fainting, hemoptysis (coughing up blood), shortness of breath, painful respiration, new onset of wheezing, any new cardiac arrhythmia or any other unexplained symptom referable to the thorax.

Sources: Emedicine.com (Craig Feied, M.D., professor of emergency medicine, Georgetown University; director, National Institute for Medical Informatics; director, Federal Project ER One; director, National Center for Emergency Medicine Informatics); CNN.com Health Library