An interview with a client living with COPD
WillKin Founder & Director
Becky Zucco is a clinical exercise physiologist specializing in COPD and cancer with over 25 years of experience in her field. She has written and developed educational courses for the prevention and management of chronic diseases. She created Project Move, for elementary schools. She is an avid traveller, marathon runner and mother of three. She understands the powerful effect of movement on the body and mind, and how human behavior can be influenced to achieve significant improvement in health.
An interview with a client living with COPD
I interviewed Darren on a regular Thursday afternoon. He was feeling a little “off” and shared that recently he experiences more frequent stomach issues, although not sure if these are down to the COPD, medication or simply age.
Darren began “I always used to kind of laugh at people with allergies … really, I thought? My answer to everything was just to work a little harder and you’ll feel great” I don’t say that anymore, now that I have both food and environmental allergies. I must stay away from potatoes and tomatoes, most sea food, dairy and egg whites. Perfume and cologne take my breath away, as does cleaning products. Try walking into a hospital just after the cleaning crew gets done!”
Darren was a workaholic of sorts, from an early age working on the farm lugging hay bales to spending hours as an adult in his workshop fixing boat propellers. An occupation that played a large part in his COPD.
“Everyone assumes it’s from the smoking.” says Darren “but so many people, know so little about us with COPD. And it is extremely frustrating… especially when you are told to take up knitting by a national lung helpline. It feels like they have lost all hope for you. I mean seriously?”
I was interested in hearing Darren’s story. I wanted him to know that there are people who care and want to understand COPD and help in a way that is meaningful and positive.
“Are you sure you wanna know?”
I was sure.
“I was born in Regina, December 5th, 1966.”
“My parents both worked and would bring me to the babysitters. But I wouldn’t stay with just anyone. I just didn’t trust anyone and I still don’t. I was very shy too. Which probably explains why I started drinking early on. I didn’t like rules then and don’t to this day, which is why I had to work for myself. I was bad tempered and my dad used to call me little ‘Raging Bull’. But I mellowed out when my first kid, John, came along”
I asked to know a bit more about Darren’s childhood. What shaped him and his behaviours.
“One day in 1974 when I was about 9 years old, my dad had enough of family quarrels and arguments and we moved to Ontario to live with my uncle who lived about 25 miles North of Pinewood. He had no hydro and no running water. Dad had bought a farm but it was during fall and the guy didn’t want to move until spring. We stayed with my uncle all winter, until spring so there was seven of us in a little 2 storey house, about 20 by 20… no running water, no hydro, no telephone, and that’s the way my uncle lived his entire life. It didn’t bother him one bit. Him and his dog. He’d charge his batteries and had this little black and white TV so he could watch his hockey games and that’s all he’d have. And this video recorder that he used to video record the deer, all 20 or 30 of them. And that’s where we lived”.
I asked if that’s what fostered his love of the simple life.
“When we moved to the farm, well mom and dad smoked, my older brother he smoked and my other older brother the two of ’em, they smoked and, well at that time a lot of kids smoked, that’s just the way it was. Dad was sneaky because every night after supper he’d sit there and have his coffee and cigarette. One night he’d grab a cigarette and he light her up and he looked at my oldest brother and he goes, ‘take a drag’. So, he did. He didn’t cough…and then he took another before dad had to take it away from him. Dad already suspected, but this was his proof because then he goes to my other brother Lavern and he took a drag of it and didn’t cough either. So, then he gave it to me and I didn’t cough.”
I asked how old Darren would have been.
“Probably about 14 then. My dad said ‘well, don’t be smoking in my barn’ and that was it.
Darren went on “We didn’t smoke a whole lot, but once he got to high school it was different ’cause then we could go buy our own”
“I started working when I was 13 years old, hauling hay for the neighbors square bales. We used to cut pulpwood with a power saw and that’s what I mean by working. I couldn’t even tell you how many square bales I’ve handled in my life… be hundreds of thousands. That’s not using this muscle or that muscle, you’re using absolutely all of them!”
“I was healthy and active. But I drank and smoked. I was probably 28 before I finally eased up on the drinking … I still smoked though. It didn’t matter how much you smoked, if you didn’t smoke a pack a day before you went out at night … you certainly would in the night… plus most of another pack! I met April, my wife, in my early 20s and had my two boys in my late 20s. I was so busy working ’cause I had bills to pay and a child to bring up. I know what it’s like to have nothing. ZERO. Way back then it was $0.64 for a Cup of coffee. I didn’t have $0.64”
I asked Darren if this need drove him to keep working hard because he didn’t want to have that feeling anymore, the feeling of having nothing.
“Absolutely because that’s not a good feeling.”
“Any time after 4:00 o’clock in the morning I get up and I would go to the shop and have my cigarettes and my coffee, look around, read my emails and then I had no shortage of work. None what so ever. So, I fixed a few things until about 7:00 and then I would go in the house make myself something to eat and then back outside and go to work until noon. Then I might run to the store and grab something quick to eat then back and work until 6:00 o’clock or whenever April would get home. She’d make supper and then I’d eat and go back out and do some more work until late. Did it for years and I did it seven days a week. Every day of the year. And my boys have the same mentality with work. They get the job done. At least they take days off to go fishing and hunting or out of town holidays.”
“My kids were in public school. It’s only a block away but along the way there was a little old lady, Mrs Dimit. She was great, everybody liked her. She was a widower. She lived by herself. I told my kids when you’re on your way to school, you can leave 10 minutes earlier and your gonna shovel out her driveway. And you’re not gonna get paid. I said, you wanna know something? You guys have got to learn that not everything you do is for money. She is a little old lady, she lives by herself. You guys gotta learn to respect the older people and if they need a hand, you will give them a hand, but you don’t need to get money for helping out a widow like her.”
Darren’s boys are big driving factors in Darren’s life. He is clearly a loving father, and his boys still live close by to him.
Darren is a homebody, happy in his own company and own space.
“I’m not a tourist. If I didn’t like it here, I would’ve moved out a long time ago”
“Probably around 40, 45. They told me ‘your lung volume is this and it should be that’ didn’t mean a whole lot at the time.”
“I can count on one hand before 2016, the times that I’ve had a cold or felt sick in my life. The doctor would go broke waiting for me to show up. I just never went. I didn’t need to. But well that all changed in my mid to late 40s”
“I was fine, but in 2016 it started getting worse. I had spent $8000 trying to quit smoking. Tried laser, tried hypnotism, acupuncture, and that’s not including gum and patches. Then they found something on my lung so then they decided that I needed to have a biopsy. Cigarettes are not good for you, kinda like a lot of the processed foods we eat. This was not the biggest contributor to my current issue, like a lot of old times who smoked and lived to be 90, I worked hard. Lifestyle is killing people off quicker. Working in a confined space got me, poor ventilation, fine dust, welding smoke and paint fumes.”
How long were you in the hospital for?
Tell me about your experience
“I was scared, I thought I was dying. They did a biopsy which is painless, then you sit there for two hours until it supposedly plugs and heals. Does its thing, then they give me an X Ray, they look at it and they say, ‘Yep you’re good to go’“
“I said to April, let’s get the hell out of here and go home. But April said ‘no we got one more test tomorrow.’ Well we went to the place we were staying and I sat down to watch TV. Suddenly I didn’t feel right. That first breath… that didn’t feel right, took another one, felt worse. So I stood up. I took another breath and was like holy crap, you gotta get a frigging wheelchair and we gotta go back.”
“I was panting like a dog and I couldn’t get any air. Air goes in, air goes out, nothing happens in between. Its like putting a clear plastic bag over your head and taping it tight around your neck. You can see everything around you, you can feel the air going in and out of your lungs but your slowly getting weaker and weaker and gasping for breath all at the same time. Then I started to sweat. Sweat run off my face, there was a round wet spot in the carpet, from the sweat coming off my face. The girl at the desk called 911 and it didn’t take long. Six guys with a Gurney showed up and got me to the emergency room.”
“The Dr was young enough to be my daughter but she jumped on the gurney while we were still in the hallway and drove a very large needle into my chest to let the air out. No pain, no blood. I was told later that I had about two minutes before my heart quit from too much pressure in my chest. Four days later they put in a second chest tube in as the first one plugged. They knocked me out for the first chest tube, the second one was put in with a local by a different Dr. I could kinda feel the knife cutting but told the Dr to “do what you have to do” to say it hurt would be an understatement.”
“Nine days I spent in there and then when they sent me home, I felt like death warmed over. I was told not to shower until Saturday to keep the bandages dry. Early Saturday morning I woke up and started removing bandages, it took quite a while. When I got the last piece off, I was done. I was out of breath. Monday morning I went to our clinic and they cleaned up both holes from the chest tubes that were removed at the hospital. A staph infections… It took weeks to start feeling better. Its been a slow downhill ride ever since.”
I had asked Darren, on a previous call, about what he thought about during his hours and hours of working alone.
“I guess I just work better alone. For over 20 years I didn’t think I had a job so much as a hobby that paid well. Rarely did I go to work not wanting to go, I enjoyed my job, to take a bent up aluminum or steel propeller and make it look like new is a good feeling. Today, it’s the job at hand. Sometimes it’s trying to find something to occupy my mind on the Internet or messing around in my shop with little things instead of just get thinking of all the ambulance rides after 2016 and all the times I should’ve been dead.”
“I might be part cat because I already figured out that I have used up 8 lives”
“Like I said, I have been through the anxiety and depression thing. I phoned every phone number you can find on the Internet for help and information. The lung Association told me I should start knitting… really?!”
“I felt like I had an empty feeling inside of me.”
“Then I finally did something that filled that hole inside of me. I tried so many times to go to church and I couldn’t even drive in the parking lot. Finally one day I did. I’ll give you the short version. I walked in there without my oxygen because I knew once I got in there, I wouldn’t be able to get out until I caught my breath. I was sitting in the back. I was panting like a dog, sweat running down my face and shaking like a leaf. I asked myself, what in the hell is wrong with you. This is Gods house. Finally, I calmed down. Nobody listened to that priest closer than I did. Pretty soon it was time to get up for communion. I’m the only guy sitting down. Finally, I told myself if I don’t get up and get in line, the Holy Spirit is going to come down here and kick me, I went to a catholic school, you know. So I got up and got in line. And when I walked out of there, that day, I haven’t felt that good in months and months and months”.
“I used to fill that void with material things… I’ve bought so much stuff over the years that I never needed and never used”
“I used to use my oxygen in the shower, now I am able to calm myself from the inside and go without. I have since learned to relax and remain calm in the shower.
I was overwhelmed when I heard Darren’s change of tone in this interview. His matter-of-fact approach to having found something that ‘lifted him up’ spiritually. When you have COPD and find it almost impossible to find the motivation, energy and breath to do the simplest tasks, you need something more.. something powerful. To look deep inside and draw on intrinsic reasons to keep going. Darren discovered that his faith and spirituality could calm him. It helps him cope and keeps him positive.
As exercise rehabilitation professionals it is important that we help our clients with COPD get stronger physically to maximize their quality of life and better self-manage their condition, but we must also help our client’s look within themselves and together find the motivation and coping mechanisms to be able to act on our advice, carry through the activities as we coach them to continue along a positive path.
“My answer would probably not make me very popular with the drug companies but people need something more than the medication. Something spiritual as well as medical. Drugs will not fix everything.”
It was great insight as we look to develop a program that really seeks to make a difference. I am sure Darren may do a few things differently in his life looking back. But he is wise, and he is smart and he is a good person. He deserves to live his best life. Like many with COPD, he grew up in an era which did not consider the consequences of smoking. There is no place for stigma associated with lung disease, and people like Darren receiving optimal care, advice and rehabilitation.
Darren does not want to be able to lift 50lb dumb bells or run a half marathon. He wants to keep tinkering in his workshop. Lifting his hammer occasionally. Seeing his sons and living a positive, simple life. He wants to be Darren.
And we need to give many people just like Darren the hope and the help they need.