Category Archives: PCD

Most. Humiliating. Experience. Ever.

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“Oh, hey, good luck with that phlegm.” (Said in the most insincere, mocking way imaginable.)

“Thanks a lot, jerk.” (Said in most indignant, shocked way imaginable).

And with those parting words at baggage claim, thus ended the most humiliating, awful experience I’ve ever had in terms of being a patient. Even several days later, my face flushes in anger and my heart rate quickens a bit.

Let me start at the beginning. My husband and I were returning from a weekend trip, a Thursday night to Sunday affair. We brought The Vest with us, as we always do, and we brought it as a carry-on item, as we always do. It cost nearly twenty thousand dollars, so we’ve never wanted it rolling around underneath the plane, and we’ve never had trouble stowing it above us. This time, our plane was a tiny commuter plane, the kind with only about 20 rows and midget-sized overhead compartments. The gate attendant Thursday night said our backpack might not fit overhead (which it did) but that The Vest would.

It didn’t. So we stowed in beneath our feet and while it did protrude about an inch or so, I still had room for my feet and the flight attendants made no mention of it. We did the same thing Sunday, figuring on the same airline and on the same type of plane, what passed muster Thursday would be okay Sunday.

It wasn’t. I should also add that by the time we were on board and stowing carry-on luggage, the plane had already been delayed by 35 minutes and we were still third in line for take-off. The flight attendant and a customer service rep told us that it wasn’t far enough under the seat and we’d have to check it. My husband asked if it would be insured if we placed it underneath the plane and something happened to it. We were told that it wouldn’t be because it wasn’t checked originally, and that we should have made alternate plans if we wanted it insured. We pointed out that we would have made other plans if we hadn’t thought we could bring it on the plane the same way we just had days earlier, but handed it over anyway.

The whole exchange lasted about three or four minutes. People on the plane were getting antsy—one man even pointed to his watch and said he had places to be—and I don’t blame them, but it was the airline’s inconsistency that caused the problem. I was mortified and really self-conscious the whole flight, even though we were still delayed several minutes while the backlog of planes in front of us departed and all of that had nothing to do with our four-minute exchange. Still, the whole plane knew I had a piece of medical equipment that needed to be moved, and that’s the kind of public notice I don’t like.

I had recovered by the time we were at baggage check. In fact, I was resting on a bench when I saw a man approach my husband and get in his face. Seriously. In his face.

“Hey buddy, we’re cool. It’s cool. I mean, I got my car towed because you wouldn’t check your bag, but really, it’s ok,” he said, shouting.

Because I am a hot head and because I didn’t like this guy yelling at my husband, I got in the middle of them. They were going back and forth, the guy (who was there to pick up his girlfriend) screaming that we should have made other plans and John explaining that the 35-minute delay prior to boarding is what made us late.

“You don’t know anything about our situation. We were allowed to bring it on the other day. It only took a few minutes to check it, and we were still third in line for departure, so it didn’t make a bit of difference in terms of when we took off,” I said.

John chimed in with, “It’s an expensive piece of medical equipment that helps keep my wife alive. It keeps her from drowning in her phlegm.”

“I’m sorry to hear that,” the guy said. For a second, I thought he meant it. “But hey buddy, say my girlfriend has a health problem, I wouldn’t be able to take her to the hospital because my car got towed. If I hadn’t been waiting twenty minutes, I’d have a car, but it’s cool, I mean as long as you feel you don’t need to check your bag.”

“Wait, you parked your car in a tow zone and left it alone for twenty minutes and it’s our fault you got towed?” John asked incredulously. (At that precise moment, the airport security message warning that all unattended vehicles would be ticketed and towed immediately came on. It was too perfect.) “The plane was late before we even boarded it, so don’t put that on us. And don’t park in an illegal area and leave your car alone and then scream at me for it!” John added, motioning in the air towards the intercom.

All three of us went back and forth a bit longer, voices raised and faces red. When the guy finally walked away and spat at me“Good luck with that phlegm” several times, very loudly and meanly, I was shaking. Literally every muscle in my body was quivering, not from anger but because no one had ever made me feel so terrible. The way he yelled it at me in front of so many people basically felt like he was saying, “Die for all I care, my car got towed.”

I sat down on the baggage claim carousel to steady myself.

I regret so many things about that whole incident: I regret the airline’s inconsistency put us in the position of risking a twenty-thousand dollar piece of medical equipment. I regret that both of us lost our cool and raised our voices in response to this guy, something I have never done in public and hope to never repeat again. And I really regret that after everything I’ve seen and done, some jerk still had the power to make me feel like my existence was so inconvenient and worthless.

And I will never, ever fly on a certain airline named after the fourth Greek letter again!

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.