When Breathing Is No Longer as Easy as Falling Off a Log
Pulmonary Fibrosis Awareness Month, September 2014.
As Pulmonary Fibrosis awareness month is now in full swing, I thought maybe I should write a post about this horrible disease. For those of you who might not know, my father was diagnosed with PF in 1998 or 1999 and died from it in 2004. It’s funny how I can’t remember the beginning of his ailment but I sure as shit can’t forget the end.
The thing about PF is its elusive nature. So many people are misdiagnosed with emphysema, chronic bronchitis, or even heart disease, if they’re diagnosed at all. It presents itself like these illnesses but PF is very different. The tissues of the lungs are gradually replaced with scar tissue, making it more and more difficult for patients to take in oxygen. As the lungs harden to the consistency of footballs, the patient will have problems breathing, the heart works overtime to pump what little oxygenated blood exists into the body, constant coughing can become an issue, even getting up from a seated position is tiring.
Eventually, one of several death scenarios will happen. One is the heart just gives up. After what could be months or years of pumping so hard with such little payoff, the muscle just exhausts itself and dies. Two is the lack of oxygen will wear out the body to the point where the patient will slip into a coma and die. The third, and I’m thankful this didn’t happen to my dad, is the patient will die gasping for air as the heart and body shut down. These are, at least, the types of death I’ve read/heard about.
I don’t think I’ve ever really talked about the minutia of daily life for my dad while he was sick. For the first several years it hardly seemed like much changed for him. Sure, he couldn’t go on his daily walks anymore but other than that, he seemed normal. It wasn’t until the last year or so, when he was on supplemental oxygen 24/7, that things really began to change.
He could no longer drive himself down to FL for the winter, or anywhere else for that matter. He needed help with household chores, shopping, fixing meals. Bathing himself became too difficult to the point where he only showered once a week. And near the end, he needed the assistance provided by a Hospice nurse. His routine for bedtime would be to get up from the couch and walk to the den doorway; rest for 5 minutes; walk the 15-20 feet to his bed and sit down; rest for 10-15 minutes; get up and crawl into bed. This usually wouldn’t happen until about 2am. Because his energy was so lacking most of the time, he slept on and off all day so naturally he wouldn’t need to turn in until the wee hours.
I remember my last visit to him in Florida. He asked me for help upon his return to Michigan. Of course I said I would do whatever was necessary to help out. Luckily for me, I worked for a company that allowed me to do half days so I could go to my dad’s house in the afternoon and take care of him. As he sat on the edge of the small pool in his backyard, soaking up the rays of the Florida sun, I realized how frail he was. He’d lost enough weight to the point where, as I stared at his bony shoulders, I could see the old man he had become. We like to think of our parents as immortals or at least impervious to disease and harm. Even after my mother’s death 14 years earlier, it still hadn’t sunk in that parents are just as vulnerable and mortal as the rest of us.
And that afternoon, looking at the fragile frame of the powerhouse I’d always known as my dad, I realized he would soon be dead and the rest of us would be left behind to soldier on without him. Even as I’m typing this, I’m crying like a baby and recalling how much it felt like I’d been sucker punched in the gut for weeks after his death.
Yes, that sounds very selfish but think about it. Funerals, memorial services, graveside rituals, mourning – that is ALL for the living. Once the dead are gone, the worst is over for them (we hope). The rest of us need to find ways to help us go on living. So we tend to graves, have parties on birthdays or death anniversaries, watch their favorite movies, blog/vlog/share stories about them in support groups, all to remember the happiness our loved ones brought us. And sometimes it’s enough.
There may be, perhaps, some of you out there that think my descriptions above are a little harsh or too real. That maybe I should have said a person ‘passes away’ or been less descriptive or some other bullshit euphemisms. And I say fuck that. Reality is harsh, people. This disease, as well as any other that slowly ravages the body until death occurs, sucks major balls and there’s no point in sugar coating it. I’ve had to watch both my parents die slowly and I’m still pissed off about it. I’m not going to make this easy for anyone else because I didn’t get that choice. And neither did my folks.
I could tell you so much more about my dad – about his life, his character, his sense of humor. But in the spirit of spreading awareness about pulmonary fibrosis, I wanted to share some of his experiences (at least the ones I saw) with this disease. Now I’m not going to tell you to dye you hair blue, pour ice water over your head, donate anything to the PF organization, or cover yourself with peanut butter and run naked through a woodland forest occupied by bears. I just hope that this blog has perhaps opened your eyes a bit to a lesser known but no less devastating disease and its darkness that has personally touched my family.
You can, if so inclined, click on the link I’ve put below to go to the Pulmonary Fibrosis Organization website and get tons of information about PF.
“To live in hearts we leave behind is not to die.” – Thomas Campbell (1777-1844)
This image captures all that my dad was: funny, silly, and enjoying life!