Category Archives: Bronchiectasis

Don’t Know What You’ve Got Till It’s Gone

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I didn’t realize just how little energy I had as a result of my malfunctioning thyroid until I started taking thyroid medication—it was the kinetic equivalent of putting on a pair of eyeglasses for the first time. Everything was sharper, clearer, more focused.

It was a whole new world. Can you relate?

I didn’t realize just how awful (sluggish, congested, weak) I felt when I ate foods containing gluten until I stopped eating them, and immediately ditched the sinus headaches and malaise. Similarly, I didn’t see just how foggy and gross I felt eating foods with sugar (wine, fruit, vinegar, etc in my world) while on suppressive antibiotics until I eliminated all sugars from my diet and no longer got spacey or clammy or had palpitations.

Five years apart, these experiences opened up “whole new worlds” on their own—not without sacrifice, but totally worth it. Have you been there, too?

And of course, I couldn’t tell just how much the muck festering in my lungs clouded over everything and constantly made me feel awful until I started treatments that actually addressed it—postural drainage, chest physiotherapy, etc—instead of just throwing steroids at it and hoping the infections would subside.

It was a whole new world, one that didn’t automatically include multiple weeks in the hospital every year. Have you experienced that type of profound relief?

Sometimes you just don’t realize how bad things were until you do something to correct it, until things are different. When it comes to medical stuff, this isn’t always a bad thing. After all, if we can look back and compare a “before” and “after” favorably, then we’re doing something right; we’re treating the right thing or implementing the right therapy or making the right lifestyle choices.

And right now, I’m experiencing a related type of gratitude. It has been two months and change since I was acutely ill. That’s right, 10 weeks of relative normalcy, a huge step given that for the past year or two my stretch for bad infections had been about two weeks at the most. The few infections I’ve had have been much more minor than normal, so beyond the daily coughing/wheezing and maintenance, my various conditions have been really stable. Part of it is because my “bad” season is over (September-May), part of it is because I am out in public less during the summer (no commuting to germy college campuses), and I know a huge part of it is because of the very aggressive treatment I’ve almost completed.

Whatever the constellation of factors is, I’ll take it.

I forgot what it was like to be able to accomplish a lot of the things I want to do every day, or to make plans without hesitation or fear I’d just have to cancel, or to go to gym and know my lungs and body will hold up their end of the bargain. I forgot just how great and necessary it is to see friends in person, and be part of family functions, or leave the house and do fun things with my husband on the weekends.

Only now that the vortex of that long, awful winter has finally released me can I say that I didn’t realize what an effort simply getting through the routine of daily life was until it was no longer an effort.

And I love this feeling. It’s a whole new world.

Can you relate?

When the Familiar Becomes Something New

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We had a really interesting conversation in my writing group the other night. In sum, we discussed how when we’re younger (teenagers and young adults) we are often so willing to embrace—and actively seek out—new experiences. The older we get, it gets harder to break out of familiar roles and stereotypes; we cling to the routines and the responsibilities that define the lives we’ve been working toward.

But sometimes, isn’t it so great to experience something new, that adrenaline rush that signals we are leaving our comfort zone?

I’ve thought a lot about my friends’ comments the past few days. The night before we met up, I returned from a short trip to Dublin, Ireland, where I’d spent a year studying when I was in college. I was jetlagged but exhilarated.

Clearly going to Ireland wasn’t a “new” experience for me—I loved the city so much when I lived there, and despite changes in Ireland, many of its streets and pubs and quirks were as familiar to me almost a decade later as they were when they were my streets, my pubs, and my adopted quirks.

But in many ways, it was new.

You see, a lot has changed since I was a college junior. That was before I had my diagnoses of PCD, bronchiectasis, and celiac, before the failure of my adrenal system, before I really acknowledged the consequences of choices I made, before it got to be that literally every time I’m in a public place or a train, etc I get sick.

That year was sandwiched in between years of hospitalizations and trips to the trauma room or ICU, certainly, and I was definitely sick while I was there. (Backstory: after I was accepted to Trinity College Dublin, they required several doctors’ notes to prove I was medically stable enough to even attend.) I had a private lung specialist a few blocks from my apartment there, and I had my requisite infections. My backpack for a several-weeks’ sojourn across Europe was mainly filled with medications, and I got lots of questions at border crossings.

And being me, of course I broke my ankle and tore ligaments before my trek. I lost my cast and crutches the day before I left for Spain, and hobbled through Europe with a splint-type contraption that smelled terrible and made navigating hostel showers quite a production. (I had patient friends.)

Still, I went. Not just to Dublin, inhalers and pneumonia and all, but to many places in Ireland and Europe. I saw amazing things and became close to amazing people, many of whom I am lucky to have in my life all these years later. I thought I appreciated the experience fully while living it, and I think I really did know how lucky we all were.

Looking back through several years’ experience, though, I appreciate that year abroad so much more now. Of course there is the obvious reason—how often can you pick up and live in a different country, or pack a bag and see so many sights in so many different countries? It is the quintessential young adult experience.

But the patient in me appreciates it for deeper reasons. In the intervening years, I’ve said “no” to a long list of things: family dinners, birthdays, and holidays; weddings, showers, and baptisms; dinner plans, outings, and get-togethers with friends…and of course, travel. It seems almost every time I made plans or booked a flight I had to cancel because I was sick.

And so in the same ways we can get pigeon-holed by labels—“lawyer” or “student” or “parent” or “teacher” or any of the many, many roles we have—I too have felt pigeon-holed by “patient.” It was by necessity and not choice, but it still seemed to define so many of the choices and experiences I’ve had. My acute crises and in-patient admissions have calmed down, but often over the past several years it seemed I could hardly recognize the person who, despite some complications, could travel that much, could spend hours each day walking through the streets of Dublin.

(And certainly this past winterdidn’t help.)

Or, despite how naïve it may have been, I still trusted my body then, still depended on it not to let me down. For better or worse, I’m not as quick to say I do that these days.

And that’s where we get back to my recent trip. Yes, much of the trip was reminiscing and visiting old haunts (but so much better this time around because I was with my husband, and he could show me his old Dublin haunts, too) and most of what we did I’d done before. But it was new role for me, one I hadn’t been able to embrace in such a long time…and that’s why I appreciate that year so much now: being back in Dublin reminded me there is always the possibility of something new.

(Even if only for a few days.)

Carnivals, Links, Nebulizers…

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Increased time spent with my trusty nebulizer plus increased deadlines with a dash of extended family functions=what?

You guessed it, even more time with nebulizers, chest PT, and new meds. Oh, and it partially explains the lack of posts the past week or so, despite the ideas teeming around in my cluttered head.

However, I do have some links to quality reading to share. First off, it’s the end of the month, which means the monthly Pain-Blog carnival is up at How to Cope with Pain. The best posts of each month are featured, and new bloggers are always welcome to contribute.

Also, I’ve written before about patient authority and the right to say “No” to procedures. (I’ve also left the hospital against medical advice before, but that’s a whole other story, and turns out I was totally right to do so.) Most times, though, I do what I’m told even if I don’t like it–because let’s be serious, is there usually a lot of appeal to invasive or otherwise uncomfortable medical procedures?–if it’s something my doctors and I feel will best give us the information we need to improve my health. Anyway, I mention all this because I came across an interesting Explainer piece on Slate.com about patients’ rights and consenting to medical procedures. Check it out if you have a minute.

An Open Letter to Non-Coughers

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This advice column in Salon—“There’s a cougher in the office and it’s driving me mad!” gave me a lot of pause, especially since the academic year is about to begin and I will soon be sharing a very small office with several colleagues and in front of classrooms of students.

As you’ll see, the letter-writer seems to think his co-worker’s cough is due to some sort of neurosis, not a physical condition. I can’t say whether that’s fair or accurate (somehow it seems unlikely), but I can say that for people like me, persistent public coughing is as much a nuisance for us as it is for everyone else.

You see, coughing is an occupational hazard of being me.

I am famous (infamous, really) for my cough. When it is juicy and tight, people in doctors’ offices grimace at the sickening sound of congestion churning around and politely ask if I’m getting over something. Some offer thoughtful but useless cups of water, others un-subtly move seats. “I’m not contagious, I’m just being me,” I’ll say, and I’m met with confused stares. I get lots of turned heads and cool stares in movie theatres and on the subway, in stores and restaurants. I blush, knowing people inch away from me thinking I am contagious and knowing this is not unreasonable of them.

When the cough is spasmodic and choking enough to land me in the emergency room, people in the waiting room practically trip over one another trying to move away from me, something I’ve dubbed the “ER Duck-and-Run.” Someone will quickly slide a facemask over me and wheel me past the triage bays and right into the ward, and I can still feel people’s eyes on me and their apprehension enveloping me as I am wheeled away. I’m torn between wanting to reassure them I don’t have SARS or something and wanting to say “I can’t help it, stop staring at me!”

But can I really blame them?

When my cough is dry, it is a hoarse bark, the kind of nail-splitting sound that ricochets off of walls and echoes obtrusively through quiet corridors. That cough is the one people remember most. It is the cough nurses hear long before they come through the ER doors and actually see me, the cough that makes hospital roommates discretely ask for a room transfer, the cough whose grating tenor disturbs family members visiting loved ones several rooms away. It is the cough that makes me excuse myself from my writing workshops and wander through deserted hallways until I find a place far enough away to absorb its sound. It is an almost shameful fame I have acquired by proxy of this cough of mine because I do not have the power to change what is so obviously uncomfortable for other people. I do not like that feeling.

So believe me, non-coughers of the world, people like me try to hold it in. We try to stifle it until we can duck into a bathroom, we make sure our mouths are covered, we are just as put out by the constant hacking and the rib-aching choking. We don’t mean to interrupt or irritate you, and we certainly don’t mean to be such a distraction. Coughing is our survival mechanism, the process we need to move the gunk in our lungs around, so while we hate it and it often hurts and we cannot help it, we also know we need to do it.

Thank you for the cups of water, for the smiles of understanding, for not moving your seat or shooting me a look. I promise I’ll try to keep it down, okay?

What’s the Deal with Dairy?

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I’m turning to you, thoughtful readers of the blogosphere, for some input on a decision that has been slowly building traction in the back of my mind for several days now.

Should I go dairy-free?

I saw my doctor this week, a follow-up appointment to see how I’ve responded to my antibiotics. My respiratory infection has definitely improved, but my bronchiectasis exacerbation from it is still pronounced, so I have a handful of new meds and inhalers to try and quell the chaos rumbling in my airways. I don’t even remember how it happened, but dairy came up in our conversation. Of course, I’ve long known that dairy is a mucus-producer, and if there’s anything I don’t need, it is more phlegm in my life.

“I really don’t consume much dairy,” I told him, sheepishly looking at my cup of coffee on his desk, which clearly contained milk. I don’t even like milk; even as a kid I never drank it on its own, it was merely a conduit to moist cereal, and as an adult, it’s merely a conduit to what I think is better-tasting coffee.

But when I thought about, I do have dairy often enough. I eat cottage cheese a couple of days a week because it’s a great protein source, and while I try to avoid cheese because of its fat content, I do have feta on my Greek salads regularly.

“Well, the less dairy you have, the better,” my doctor said. I nodded.

The seed was planted.

And then I stumbled across this site in the comments section on Kerrie’s blog (ironically, her original post included something I’d written about going gluten-free, so I’m now engaging in an amusing but totally productive game of blog-tag, I think 🙂 ) and I started to think about giving up dairy more seriously.

Enter the back and forth dialogue in my mind: It would certainly be a big sacrifice, lots of labels to read and accommodations to make. Yet so was going gluten-free, and you wouldn’t change that for anything, you know you feel so much better. Yes, but I have celiac disease, so clearly going GF would make me feel better–I am not lactose intolerant and don’t think I feel any worse when I eat dairy, so would I even see results? But don’t forget, you know you get more congested after frozen yogurt, so even if the only change was less phlegm and less exacerbation, wouldn’t that be worth it?

And, finally, the remaining question: But your diet is already so limited. Wouldn’t removing dairy make an already difficult dining situation (remember, one of your hobbies is trying new restaurants!) even harder?

Yes, but if it helped, wouldn’t it be worth it?

Leaving the dialogue in my mind alone for a second, what you do think? Is it worth a try? Is it something worth doing in degrees–eg, removing “big” thinks like milk, cheese, etc but not whey and all those little tiny ingredients that appear on labels? (This reminds me of people who go wheat-free but still eat many other forms of gluten). Would I still get any benefit, or, like going GF for a celiac, is it something that only works when you do it 100 percent?

From Hospital to Hub

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So as some of you may have suspected given the gap in posts, my chant did not quite serve me in good stead. I spent the weekend before last in the hospital, which broke my longest streak ever (14 months) in terms of being hospital free, but all was not lost.

Certainly there were a few bumps: no, bronchiectasis and bronchitis are not the same thing so writing down the latter when I have the former during triage is not exactly helpful, and yes, the belligerent man in handcuffs in the next room wailing at the top his lungs, swearing, and hurling various insults and epitephs at the nurses and doctors trying to help him did unnerve the rest of us a bit.

But overall, collateral damage was minimal—I didn’t have to stay too long, and after intense negotiations, they agreed to avoid steroids and pursue another combination of treatment methods. I think I raised some eyebrows—I couldn’t breathe but was still trying to debate the issue anyway—but really, treating an infection and flare-up in a PCD/bronc patient does not depend on the exact same approach used in treating an asthmatic, and I just wanted them to understand that. I can’t say I blame them; how many PCD/bronc patients pass through their ER on a regular basis?

In the week since my discharge and initial progress, my symptoms haven’t improved in any discernable way, but life has been too interesting and jam-packed for me to care. Friday I was in New York to meet with my agent and editor to discuss my book. I had no voice (seriously, we’re talking Croaker here), coughed every two minutes or so, and was so pale I scared myself when I looked in the mirror.

But here’s the great thing: My agent and my editor know I’m sick. In fact, that’s one of the reasons why they think I’m the right person to write a book about living with chronic illness for people in their 20s and 30s and how this generation of patients is changing medicine, the work place, and society. After hours of dirty looks on the train ride down because of my cough, not feeling like I had to explain myself was a pleasant relief. Oh, and the lunch and the conversation were wonderful. I went back to my hotel feeling like I’d discovered my writerly voice again. (At least one of my voices was back in action).

To add to the bliss, we met up with friends at what I consider celiac heaven: Risotteria, this amazing restaurant in the West Village that serves a dizzying array of risotto dishes, gluten-free pizza, breadsticks, and paninis and the most indulgent GF desserts. My only regret is that my sense of taste was muted given my lingering plague, but oh the consistency! Biting into thin, crispy pizza that had just the right amount of chew to it is a sensation I have missed since going gluten-free. The true litmus test? The group had to question for a minute if the breadsticks were GF or not—if they are so good that “normal” eaters have to question, then we’re talking seriously good.

I pulled into Penn Station with a lot of symptoms, a huge bag of meds, my nebulizer, and a lot of other paraphernalia. I’d been nervous all week about missing the trip and lamenting the timing of my infection, but it all worked out. Illness was ever-present, but I rested when I needed to, took cabs when I couldn’t walk, and I didn’t apologize endlessly for doing so. The sunshine, the good food, and the mix of business and pleasure outweighed all the symptoms I couldn’t leave at home.

I Will Not End Up in the Hospital, I Will Not End Up in the Hospital, I Will Not…

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That’s my chant for this week and so far, it’s working. (I’m tempted to be droll and say “But I’m not holding my breath” because of course if I could breathe and hold my breath at will, I wouldn’t need this chant, would I?)

Things are amiss in lung land. The evidence is all over our house: the nebulizer is in the living room instead of its discreet home in our bedroom and little empty plastic vials of Xopenex line the end table next to the tubing; various containers and “spit cups” are stationed in every room (don’t worry, the used ones are whisked away); my living room couch has become my office, a migration that only occurs when I am really feeling badly; tissues, a thermometer, inhalers and my peak flow meter are cluttering the coffee table; and by the end of the day, I am hoping that my new meds in their crinkly Walgreens pharmacy bags will add to the general disarray.

I haven’t been this excited to see the guy who does my chest PT in months. I also haven’t been this appreciative of my schedule, which allows me to work from home on Tuesdays, in a long time.

I joke that I get the plague each winter, but considering Easter was colder than Christmas this year, my lungs seem to be following suit. The low-grade plague I’ve battled since November has resisted several rounds of antibiotics and everything else I’ve thrown at it, but things reached a crescendo this Sunday, when I spent eight hours coughing and couldn’t walk from bed to bath without tightening up and getting really winded. Now, I don’t mind coughing any more than the average respiratory patient does—after all, it’s an occupational hazard, no?—but when it’s more spastic than productive and when little flecks of blood appear in whatever does manage to come up, I’m not pleased.

It’s not so much the hospital I dread as the requisite steroids that accompany a trip. It has taken me so many painstaking months to even begin to normalize after the two-year adrenal failure caused by the twenty-year pounding of toxic doses of steroids, and I will do just about anything to avoid them.

“Clearly if my choices came down to needing steroids in a life-threatening situation and dealing with all the effects of them or not surviving, I’d take steroids,” I said by way of reassuring my husband that even my zealot tendencies have a limit, but he looked less than thrilled with the bluntness of my statement.

So let’s hope the nebs, the inhalers, the chest PT, the new meds and everything else get me through the next few days. I’m in this precarious place where things could easily go either way, and it’s really an annoying feeling.

Coincidentally, I was re-reading the thoroughly engrossing and moving Breathing for a Living recently, CF patient Laura Rothenberg’s memoir (more on this at some point), and I realized I don’t write directly about my lungs all that much. Reading this book made me think long and hard about my lungs, and I felt alternately grateful for them and protective of them. Sure, I mention peak flows, or casually refer to not being able to breathe easily, but they are rarely the star in my posts….which is weird, since many of my other medical problems begin and end with PCD, bronciectasis, or some combination of treatments for them, and which is also weird because while a lot of my other conditions are annoyingly chronic, they aren’t the ones that have landed me in the ICU, they aren’t the ones that sometimes, when I think long-term, make me nervous.

Maybe it’s because they are always there, because even on my “good” days I still wheeze and cough and feel them, there isn’t too much to report. They’re a constant, and constantly talking about what is constant would be…well, boring. What makes Breathing for a Living so powerful and engaging is that it isn’t a book of symptoms and reports…it uses those medical changes and fluctuations (especially pronounced in a double lung transplant patient) to propel a larger story, a larger, more compelling struggle than the symptoms alone could ever be.

Either way, my own lungs won’t let me ignore them today. Let’s just hope I win this week’s battle of wills.

An Addendum to “Why I’m Not a Numbers Girl”

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You may remember that I don’t typically care much for numbers—how they can define us, how they can limit us, how I can’t escape them even when I wish I could. (Here’s the post all about that.)

I humbly submit an addendum to “Why I’m Not a Numbers Girl.” Don’t get me wrong, in most instances, I still feel that percents and ratios and variables and risk assessments too often fail to quantify what’s most important. I still don’t like that as patients, too often we’re reduced down to a list of stats and numbers (vitals, meds, dosages, surgeries, lab results).

But I recently (re) discovered that sometimes, numbers can actually better our understanding of ourselves. Not exactly earth-shattering news, I realize, and certainly all you diabetics who test blood sugar daily or patients who monitor blood pressure and other routine activities like that must be rolling your eyes at the obviousness of that statement, but it’s an important realization for me.

When I was acutely ill (in and out of the hospital for weeks at a time), the doctors trying to figure out what was wrong with me asked me to keep track of my peak flow meter readings. For those of you blessed with hearty lungs, a peak flow meter is basically a tube you breathe into that measures how much you can exhale. The lower the number, the more constricted your airways, so peak flows are a good way to predict respiratory trouble. I stuck with it for several weeks, filling in the little boxes in a notebook a doctor gave me…and then I went into the ICU again and everything got thrown upside down. When I came out of this hospital, I had a new team of doctors and a million other new things to consider and somewhere along the way, my little notebook disappeared.

And then last week, in the midst of spring cleaning my medications (so long, empty pill bottles! See you later, empty inhaler canisters!) I stumbled across my humble little peak flow meter. A desire for more order and predictability in my life coupled with an increasing interest in Microsoft Excel prompted me to re-instate the daily peak flow charting, this time with nifty little grids and columns.

The result? I’ve noticed a pattern: the days where my morning readings are especially low (they are never spectacular, even on my best days) correlate with the days where I wheeze more, cough more, and in general experience more fatigue. The days where my early morning readings are higher? I am able to go to the gym, I don’t spend half the day coughing, and I can get a lot more done.

Duh. I know you’re thinking it. I am, too. Somehow charting peak flows just slipped to the bottom of my priority list, far below all the other more time-consuming things I do to maintain my health. No, knowing my peak flow readings will not prevent my bad days altogether, but it will help me prepare for them and predict them. I understand my body and my symptoms so much better once I stopped long enough to pay attention to my internal warning signs.