I Can No Longer Enjoy These Luxuries Because of IPF
If I could give strangers one gift, it would be that they never take their healthy lungs for granted.
I’ve longed for a life with fully functioning lungs for 1,854 consecutive days. That’s how long it’s been since I was diagnosed with idiopathic pulmonary fibrosis (IPF) at the age of 28. IPF slowly steals away one’s ability to breathe as scar tissue, or fibrosis, builds in the lungs and prevents adequate oxygenation.
While still uncommon in those under 40, IPF increasingly is affecting more young adults than in the past. I see it every day when people contact me after being diagnosed. They want to talk with someone who has been through the diagnosis process and has lived with this hideous disease for years.
Many worry about how the disease will affect their future, and I wish I had something upbeat to tell them. Unfortunately, though, IPF has a profound impact on the lives of those diagnosed with it, particularly on young people. Without a lung transplant, our future as young adults is threatened because IPF is a fatal and life-threatening lung disease.
I try not to dwell on the difficulties and changes IPF forces upon our lives, but sometimes staying positive is hard. This is especially true for those who lived an active lifestyle before diagnosis. That was my life before IPF entered the picture in April 2016.
Sometimes voicing these difficulties helps. For me, getting it down on paper helps me release my frustration. That is why I wanted to write this column about some of the luxuries I can no longer access as an IPF patient.
Healthy young adults might take the following things for granted. They are things I deeply miss doing on my own.
An abundance of literature highlights the importance of exercise for patients with IPF. Most notably, exercise can help maintain lung function, along with a healthy diet and lifestyle. It’s something many people do to keep stress down, but the luxury of being able to exercise by myself has been stripped from me as a result of IPF and various safety concerns.
Prior to getting sick, I found solace in going for long walks, especially on summer evenings, when I would watch the sunset or breathe in the cool air after a hot day. As my lung disease progressed, it became too risky to do this alone, in case my oxygen saturations dropped or I got into trouble and couldn’t run away from a situation.
Not answering my phone
A close friend and I coined the term “turtle-ing,” which refers to the need to hide inside our homes to avoid others, as if we were in a turtle’s shell. Usually we need to do this after a chaotic week at work or to prioritize our mental health. This is our introverted personalities shining through.
Unfortunately, being able to “turtle” has become nearly impossible because of IPF. People panic if I don’t answer my phone for prolonged periods of time. They think something has physically happened to me, rather than understanding that I just want to be alone in my shell to embrace the quiet or the comfort of home. The luxury of turning off my phone or not answering it has been taken from me as a result of this cruel lung disease.
Going on spontaneous trips
I used to be described as fiercely independent and free-spirited. I would take off and do whatever I felt like doing on my own. (Did I mention I spent weeks alone in Hawaii and loved it?)
Unfortunately, my ability to take spontaneous trips is now complicated by the fact that I need to proactively plan and manage my medications and oxygen needs. While I’m literally tethered to oxygen by nasal cannulas, sometimes it feels as if my disease were figuratively tethering me to a life absent of spontaneity. And I hate that.
A fireplace is a luxury in many homes, as it offers a place to comfortably curl up and read or watch TV. Another luxury is a backyard BBQ spot. Because I have supplemental oxygen in my home, these luxuries have been taken from me. I don’t have a BBQ or a fireplace because of the risk, although both are things I wish I had for comfort and enjoyment.
What things or activities have you given up due to IPF? Please share in the comments below.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.