When a New Diagnosis Takes Your Breath Away

This article was written by Kristen Willard, MS

I’ll never forget it. Even though 25 years has passed, I remember the moment vividly.

"Don’s cousin has that disease Kristen’s father has," my grandfather said nonchalantly, as relatives talked in a seafoam-green living room.

The disease my father has? What was he talking about? I wasn’t sure I wanted to know. I asked anyway. "What does my dad have?"

My grandfather continued without hesitation. "Emphysema," he said flatly. I don’t remember much after that.

My world was changed with a verbal gut punch, a statement that I assumed meant the worst. Twenty years earlier, my father held a tiny me as he stood at his mother’s memorial service. She had passed in 1977 from emphysema. That was the year that Elvis died and Roots debuted on television. COPD was most certainly not a household name.

Twenty years later, when my father was diagnosed, we still didn’t call it COPD. We didn’t have a Foundation to support us or search engines that brought medical information to our fingertips. As was the case with many conditions, the world did not necessarily want to discuss them. No one jumped to pull up a chair to the kitchen table and talk through a loved one being diagnosed, what doctors had told them about prognosis, what words like chronic and hyperinflation meant. So we navigated on our own and heard many things second hand after completed doctors’ visits. I’m glad so much of this is changing.

Looking back on Dad’s diagnosis and his COPD journey, I have no regrets. Yet there are several things we learned that might help others making their way through a strange new world.

Knowledge is indeed power. No stranger to COPD, I didn’t know until joining the Foundation team that COPD was not a death sentence, that having a lung condition likely left my father feeling like he was breathing through a straw, that the exacerbation that put him in the hospital ICU could have caused a permanent decline in his lung function. Equip yourself with information about your condition. Ask basic questions – and ask more than once if you do not understand something. Answers feel so much better than uncertainty.

I celebrate patient empowerment and would love to take us back 25 years to cheer my family as we spoke up firmly about Dad’s needs. Is there a portable concentrator that makes less noise so he can hear movies? He isn’t seeing a benefit from one of his meds and he talks about side effects from another. What other options do we have? And what is this lung surgery we read about in the paper? Is this something for which he’d be eligible? Speak up. This is your life and your loved one’s. Your voices and experiences are important.

Hindsight being 20/20, I’d offer relief more than I did. I didn’t appreciate then the tendency for a primary caregiver to decline help. But I now know that every single errand or prescription pickup or worry of which they are relieved removes its weight tenfold. Both offer help and, perhaps an even more difficult thing to do, learn to accept it.

I wish perhaps most strongly that we had known there were so many things you could do to manage COPD successfully, steps we could take to set my father up for success. These included pulmonary rehabilitation and activity that was meaningful to him, getting regular vaccinations, avoiding all infections, using inhalers and nebulizers exactly as intended (although if there ever was an instruction follower, it was my mechanical engineer father), and approaching life in a way that allowed him to expend his remaining energy on things that were most important to him. Toweling after showering taking up too much of your personal power bank? How about a terrycloth bathrobe? Feeling anxious? It’s more than normal. Let’s see what we can do so you can get back to enjoying your every day. Find out more about concrete steps you can take for a loved one to live well with COPD. They most definitely exist.

This is perhaps the most important of all of the lessons from those years. When the shock of a new diagnosis fades, let time be filled with joys, however small. You and those you love deserve nothing less.