Demanding Quality of Life

Don’t ever let someone tell you, “Well, that’s as good as it gets,” without verifying they’re right. This is a medical cautionary tale, a tale of hope. You aren’t alone. This isn’t to say your diagnosis is wrong or your doctor is incompetent, but, rather, that you should always question.

Like any industry, there are medical gatekeepers, but there are also those who, for one reason or another, manage illness rather then attempt to improve the patient’s quality of life.

A Little Background
In 2009 I developed shortness of breath (I’m a lifelong non-smoker) and was incorrectly diagnosed with COPD. The condition worsened, but my pulmonary ignorance and blind faith in doctors hampered my standing up for myself.

That all changed in 2010 when I ended up in the ICU and was taken on by a pulmonologist who correctly diagnosed Chronic Hypersensitivity Pneumonitis (HP). I was beyond his abilities, so he sent me to the leading pulmonary hospital in the country, National Jewish Health in Denver. They were too late to completely save my lungs, but they saved my life.

They also instilled in me the determination to achieve as much as possible via aggressive efforts on their part and mine. In other words, collaborative treatment. It worked, though I remain susceptible to illness (HP) and have limitations as a result of permanent lung damage (Panlobular Emphysema).

Frustrations and Success
I moved to Montana in 2014 where I took on a new regular doctor who promised to refer me to a pulmonologist at the first hint of problems. Instead, he hedged. I changed doctors and ran into the same reluctance until this last December when I was on the brink of hospitalization.

After over 18 months of trying, I’d received my referral. The result after less than two months? Gold! My health is the best it’s been since 2014. Warmer temperatures this week will aid walking and I’m making efforts to return to part-time work. My new pulmonologist is focused on, not just managing my disease, but helping me achieve as much as possible. Another collaboration is born.

Hope and Determination

Photo: CA Hawthorne

Photo: CA Hawthorne

It’s amazing what a powerful, healing force hope is. HP is notorious for throwing me curves, but doctor and patient are determined. I’ve had four pulmonologists treat me, but not all possessed the same desire to achieve the greatest active quality of life. For instance, my new doc has achieved positive results via a prescribed inhaler. Yet, over the last seven years I was led to believe they wouldn’t help.

Sometimes cautious and conservative is the right approach, but other times it leads to unnecessary stasis. What is it in your case? Find out. Question. Educate yourself. Demonstrate your determination to improve where possible. Make your doctor a partner. If they aren’t interested, find someone else. You aren’t your illness, you’re a human being. You don’t want the best health care, you want the best health care for achieving the greatest quality of life.

3 Replies to “Demanding Quality of Life”

  1. Pingback: Demanding Quality of Life | Christina Anne Hawthorne

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