Emphysema sucks
Hodge Podge by Charlie Hodge
Life is all about choice.
We may not have a lot of choice about what happens to us, but we have a choice in how we deal with it.
We can take the high road or the low, the positive or the negative…Most of my life I take the positive.
Today I’m taking the darker route for an overdue honest message.
I’ve been recalcitrant in my duties as a responsible writer to not get around to this column yet – but here it is.
Emphysema sucks. Not being able to breathe is a horrible, terrifying experience, one that I wish I did not have to deal with every day and do. Actually, in reality it doesn’t suck and that is the real problem.
Emphysema is a horrible, slow killing disease and I hate it.
If the blame train is leaving frustration station I suppose it probably starts with Mom. My first love died of Emphysema after a long nine-year battle with the life chocking calamity, and I still recall many a chat with her how she regretted a lifestyle she believed helped precipitate her death. Mom smoke most of her life and worked amidst pesticides and garden sprays etcetera. “Charlie – boy for God’s sakes please don’t smoke,” she’d plead often. Of course, I never listened. What child ever listens to their parents?
All my youth I was plagued with a chronic bronchial condition which interfered substantially with my love of sports and career. Some professionals suspected drowning incident when I was six or seven influenced it, others said it was jus genetic or “just the way it goes.”
My lung life was uneventful for the first 54 years until three broken ribs (a story on it’s own) refused to heal. A specialist informed me the ribs were healing, my lungs had been bruised, but more importantly I had Emphysema. The bomb in my head went off. Not only did visions of Mom’s struggles dance through my head, but I was set to get married to Tez in ten days. We had a good cry when I told her I was dying of Emphysema.
The next morning, I began my new reality check by announcing to her that I had changed my mind – I was living with Emphysema instead of dying of it. “It’s all about attitude and choice,” I said putting on my big boy bullshit grin. She laughed, burbled through some tears, and gave me a hug.
That was 13 years ago and, since I was not expected to survive a long time, I am thankful for what I’ve had. Along the route I’ve had some amazing folks help with the journey including Dr. Graeme McCauley and his staff (including Sarah and Alice), Todd Gale and so many others at KGH Respiratory, Curtis Tulman and many other friends and co-workers who have played chauffer or helper when I am struggling. None however hold a candle to Tez and all she has had to do since I dropped the bomb. When it comes to honouring her vows the girl has certainly covered the ‘through sickness and health’ part. Not only has she watched and worked her way through my slow physical demise but also helped me recover from two major surgeries with my jaw replaced by titanium plates and nine inches of bone out of my leg, and a tracheotomy all due to osteomyelitis, CO2 poisoning with induced coma, pneumonia, and all my teeth removed but three. I’m the only man I know who went to a plastic surgeon and came out uglier than when I went in.
To say my life has changed is an obvious understatement but Tez has been there to pick up my slack and carry me through. I think it’s important for those who know others with Emphysema what they and their partners go through.
Not being able to breathe is terrifying. Research shows that the most traumatic experience for the human body is suffocation. I get it.
As said earlier Emphysema sucks because it doesn’t allow one to suck enough oxygen to live properly. As the disease progresses the ability to breathe diminishes. It is so debilitating and crippling, and even embarrassing. At a certain stage in the decline, one turns to portable oxygen to help with breathing. Once again as one declines the volume and dependence of air increases. I started off without oxygen just learning some techniques, Then I wound up with a machine at home and lengthy tubing that I use with a nose canula. Then I started using a portable air tank on a pull-along. (What you see me with now). Once again, the amount or air and length of time on it increases as the body fails. I am also on a CPAP (similar to a BPAP) machine which I use at night to keep my CO2 from taking over.
I am now on oxygen pretty much 24/7. My body continues the downward spin and body parts naturally start to fail or function – a reminder of the reality of what we are dealing with. I’m usually pretty good with this though some days I do not feel so brave. My body shakes all the time, lack of muscles from lack of air. Talking becomes laboured and tiring. Words need to be forced out because it’s difficult to talk so people with Emphysema sound grouchy or like they are being bossy – they are not. They are taking a shortcut talking and need to force the words out.
When you are out of air it’s almost impossible to panic. You snap at people for what you need – your puffer or air tank, or key to turn on or off the air valve.
For some E patients the trip is short. It’s a quick ride to the bottom and they are gone. For many though its a slow kill. Once again, Emphysema takes too long too quickly. The disease kicks in quick and then often backs down. You go through a series of flair ups and then are okay for a while, until the next flair up. You seem to slowly slide down the slope.
There you have it folks, a little insight to those people stuck with breathy things in their face.
Its especially not fair to the spouse or partner, or care giver. They watch you cough, choke up flehm, constant blowing of the nose, skin dandruff, lost weight, lost appetite and medication if you decide to go there. When I say it takes too long too quickly, I think of how it all must feel for Tez who can only watch and do her best to help, but really can only do so much. I know it is hell for her. I owe her so much.
However, I am thankful for the time I have been given. That I have a job where I can largely sit at a table and listen and debate – easy on the lungs. Thankful for my friends and wife.
So, ironically I maintain I am alive today largely because of a stubborn streak, some amazing professionals in the medical field, modern technology and medication, my belief in the ultimate architect of the universe, and a positive attitude. Life is about choice – and I generally choose to live.
