what it feels like: a decade of symptoms, comas and cardiac arrest with copd
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barbara moore was diagnosed with chronic obstructive pulmonary disease at 60. supplied
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barbara moore, 62, knew something was wrong. at first, the shortness of breath she experienced was bothersome — a reason to avoid taking the stairs. eventually, however, moore couldn’t walk from her car to the doctor’s office without having to take a break, gasping for air before getting up to walk the rest of the way.
chronic obstructive pulmonary disease (copd) is an umbrella term for a number of chronic lung diseases, including emphysema and chronic bronchitis, according to the public health agency of canada.
symptoms of copd — such as shortness of breath, cough, and sputum production — get progressively worse over time and can become debilitating.
an estimated 830,000 canadians have
been diagnosed with copd (not including the territories), however, it is believed there are far more canadians who are not yet diagnosed. smoking is the
primary risk factor for developing copd, but frequent exposure to lung irritants, including second-hand smoke, as well as workplace exposure to coal and grain dust, can also play a role.
moore sat down with healthing to talk about coming to terms with her diagnosis, her two near-death experiences, and how she’s turned the common phrase “catch my breath” into a rallying cry for hope.
what led to your chronic obstructive pulmonary disease (copd) diagnosis?
copd is a disease that is chronic, which means it’s never going to get better, and the symptoms get progressively worse over time. i had been hiding my symptoms for a good eight to 10 years, and it got pretty hard to keep up that charade. i innately knew the consequences of getting diagnosed. i didn’t know how great those consequences would be, or how far i had pushed myself to pretend that i was ok.
what copd symptoms you were experiencing?
one of the characteristic symptoms of copd is an inability to breathe, and you become short of breath with very little exertion. unfortunately, before you’re diagnosed, your natural inclination is to say, if that hurts when you do it, don’t do it. we avoid steps — going up stairs is really, really hard. [but] once you stop doing them, you can no longer do them again. so, we become very sedentary, which makes the symptoms measurably worse.
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what did copd symptoms look like for you?
i was doing the bare minimum: i could barely get from my car to my classroom where i worked as a business instructor. my heart would be pounding in my chest, and i would be gasping for air by the time i got into the classroom. i made sure i got in pretty early so that none of the students saw that.
it was very, very difficult. i can still close my eyes and feel that feeling of getting out of the car, finding someplace to sit that’s about halfway to the elevators, catching my breath, getting into the elevators, bending over to try to position myself to be able to breathe better. i would finally get to my classroom, gasping for air, and would just wait for students to come in [so one of them could] go and get me a cup of water.
what was the moment you realized you needed medical attention?
i think that moment was the point when i was doing so poorly. physically, i was starting to get scared. at that point i was still smoking, though.
i got tested at my request. the doctor didn’t know that there was something wrong, and he couldn’t understand why i wanted a lung function — spirometry — test. but he didn’t see me getting out of my car and trying to get to his office. he didn’t see that i had to take three sit-down breaks in order to get to his office. he saw me after i had regained my breath, after i had calmed down and everything settled. he said, you look pretty good to me. your colour is good. well, my colour was good because my blood pressure was so high. it was a hard time for me.
a spirometry test is a very easy test to take, but only a specialist can do it, so you have to wait for that appointment. then if it is positive, the information goes back to your family doctor. i had my test in august.
what was the spirometry test like?
you go into a cubicle, and they put a clip on your nose so that you can’t breathe out of it, and then [you are told to exhale into] a tube. [the tech] leads you through a few exercises of inhaling and exhaling. the point of the test is to measure how much air you can expel from your lungs. the longer it takes you to purge your lungs, the more restricted your airflow.
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with copd, there is a decreased airflow, meaning that air gets trapped a bit. the airways get swollen and they produce a lot of mucus, so you have trouble getting the air out.
what was going through your head when you got the copd diagnosis?
to tell you the truth, i didn’t think i was anywhere close to dying. i didn’t realize how wrong i would be about that. i got the diagnosis in october — and there was no reason that it had to take that long. remember, i had the test in august. my doctor didn’t call me, so we assumed that nothing was wrong.
i got sicker and sicker. i got so sedentary; i started working part-time instead of full-time for the first time in my life. i would come home at one o’clock, go right to bed and nap until five. then i would go to bed at 10 o’clock at night and sleep right through to the morning, and i was still tired. i was so fatigued, i could hardly catch my breath. i could no longer stand in the classroom. i had to buy a podium so that i would have something to lean against while i lectured to my class. it was very, very hard.
in october, my doctor told me i had copd and he set up an appointment at the end of january with a specialist. i stopped smoking the day the doctor told me [i had copd].
i went through december and had two weeks off at christmas. we had just gone back to work on the monday after new year’s and that wednesday night i was sitting at my kitchen table, having a glass of wine before i went to bed. all of a sudden, i couldn’t breathe. no matter how much i tried to breathe, i couldn’t breathe. i tried to get a hold of somebody, but i couldn’t make a noise. the only thing that i could do was take off my shoe and throw it, and one of the kids came up [to see what was going on]. by that time, i was on the floor. thank god they were there.
they called an ambulance and the doctors worked on me all night. it was touch and go, apparently — i lost vital signs several times throughout the night. the doctors met my family at six o’clock in the morning the next day and said, if she makes it 24 hours, then we think she’ll be ok. but we don’t know about brain activity.
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so that was my introduction to copd. when your lungs don’t work well, it affects your heart. i was in a coma for five days, and in hospital for 30 days. they released me and i went to the specialist, and he put me right back into the hospital on respiratory rehab.
what caused you to stop breathing?
they didn’t know. they knew that i was newly diagnosed with copd, but they weren’t sure why this was happening to my heart. the blood work doesn’t show that there was anything wrong with my heart. i would eventually go for an angioplasty, but nothing was wrong. no blockage, no fat, and no cholesterol. there was no reason why my heart wasn’t optimal. we called it a copd incident but, really, it was a sudden cardiac arrest. my heart stopped.
how did you cope?
you know what’s really funny? it wasn’t me who had to cope — it was my family. i knew how i felt when i woke up after five days in a coma — it was the first time in a long time that i woke up feeling refreshed. i thought that things would go back to normal.
my daughter is a social worker — she has a very take-charge attitude. she taught my sons what they had to do. she taught my husband what he had to do. she did what she had to do. she taught me to advocate for myself. she taught me that i have rights, and that it was not annoying to ask the doctors questions. basically, everybody did what they needed to do. my family was amazing. my extended family, my brother and sisters, were all there too. all my friends were there and all my kids’ friends.
what was respiratory rehab like?
when i went into rehab, it was february 2016. and in those days, believe it or not, they had in-patient beds. i was an in-patient for six weeks, and i was an outpatient for another six to eight weeks.
in the mornings we went to rehab, in the afternoon we went to classes. the classes were education on mental health, mindfulness, and how to use puffers. they taught us about our disease. we talked about physiotherapists, and there was all kinds of education about copd. it was wonderful.
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how was the transition back home?
everything changed. i kind of felt it was no longer my house. whoever wanted to do whatever, you go do it. for the first time in my life, i was taking care of myself. i hadn’t ever had the focus on me in my life, and i was really enjoying it. my job was to go out and walk around the block, come back, have a rest, and get up and do it again. it was interesting.
i eventually went back to work and [a week later] i had another sudden cardiac arrest; i was sitting at the same place in the kitchen with my husband and my daughter. [this time] i was intubated, in a coma, for a couple of days.
now i’ve had two sudden cardiac arrests and [the doctors] would not let me go home. i ended up in the hospital for six weeks. they sent me for all kinds of tests, and they could not find a reason why it happened. my family was frantic.
the second time around was really hard on everybody because we didn’t know if it was going to be happening every six months. it’s scary, right? what if i was by myself?
the doctors still don’t know what quite happened, [and] they decided the one thing that might help is getting an internal cardiac defibrillator — called an icd. at least this would let me know that there was something going on with the heart, and it would maybe be able to shock my heart if it stopped. but if there’s no electricity, there’s no electricity. there’s nothing you can really do about it. so, they put in the icd, which was very uncomfortable, and then they sent me home the next day.
i have never had to use it. it has never gone off — you can see what has happened when they do your check-up every year.
what does life look like for you now?
i went through that whole month in the hospital, talking to doctors and trying to get my head around what was going on and how things were changing. i don’t know if i was searching wrong, or putting the wrong words in, but there did not seem to be a lot of information available.
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so i created
catch your breath 60. that is something we say all the time, constantly. let me just stop and catch my breath. and i was 60 when i was diagnosed. i’m also on youtube, facebook, instagram, and i run a support group through the ontario
lung health foundation. i have a zoom social that i do on thursday nights, and on tuesday afternoons i do an open discussion on youtube.
i also have a garden. i used to be quite a gardener outside, and i can’t do a lot of that anymore. but i have a garden inside, and i love it. it really helps me to stay with nature and to be a little bit more mindful. i have a four-year-old grandson who’s the light of my life, and he takes up a good part of my weekends.
[if anyone wants to help] i ask for people to write a letter to their government and ask for fair funding for chronic lung diseases. most of us retire before 65 and when we lose our jobs, we lose our benefits. and there’s no money. we need fair funding.
readers looking for more information on copd can check out the canadian lung association and copd canada.
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn.
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