Last week I wrote about how difficult it is to face reality as my pulmonary fibrosis progresses. This process has involved letting go of control as I face how little I can do now. The most striking example of my reduced capabilities is a scary experience I had three weeks ago.
As my oxygen needs have increased, I’ve been leaving home less often, usually three to four times a week. I decided to go to the grocery store and get a few things; I like browsing the aisles and choosing various items. My usual routine is to walk slowly with an oximeter on my finger to ensure my oxygen saturation stays above 90 percent. I had my portable liquid oxygen “stroller” with me supplying up to 15 liters per minute (lpm) which has been fine in the past.
I became exhausted and breathless after walking for a few minutes. I sat down on the edge of a refrigerator case until my oxygen levels passed 90 percent again. Then, I walked a little more and experienced a reoccurrence of the fatigue and breathlessness, but worse this time. There was no problem with my portable stroller; the oxygen was coming out at the same rate. However, I needed a lot more oxygen when walking than I had the previous day.
I sat down on a chair outside the nearby pharmacy and did some slow breathing to get my breathing and coughing under control. It was such a scary experience that I considered calling 911. However, I decided to sit for 15 minutes and then walk to my car. I asked a checker to put my food back and I made my way to my car, praying I would get there OK. I did!
Luckily, I didn’t have far to go as my car was in the first available disabled spot. After sitting in my car for another 20 minutes, I slowly drove the half-mile home.
A very frightening experience
This was the most scared I’ve been since being diagnosed with PF. I called my doctor and he fit me in for an appointment the next day. I wasn’t sick, but I now need even more oxygen than I did before — 10 lpm sitting and 22 lpm walking.
I’m blessed to have liquid oxygen; the portable “strollers” deliver 15 lpm. I can put two of them in a cart hooked up with a “Y” connector to help me walk around. The cart also has a pull-down chair I can sit on if I need to rest. I recently bought this trolley and thought it might be helpful to you too.
It’s been quite an adjustment
I’m not used to my new normal, which has made me step back and face my physical limitations.
I’ve found this recent downturn in my functioning harder to process because it was so unusual. I’ve experienced two other significant declines since my diagnosis four and a half years ago. The first one happened when I wore myself out helping my husband after he had a hip replacement two years ago. The second one happened two months ago when we took a trip to my father’s memorial service.
My scary experience at the grocery store was different. I was doing something that was part of my routine and it was an activity that I was fine with a week before. It didn’t happen because of an oxygen malfunction, and I wasn’t sick. My body suddenly needed significantly more oxygen when walking. I asked my doctor if he knew why it happened. He said, “You have a progressive lung disease that worsens over time.” I was hoping for a better answer than that, but he’s probably correct.
Much more careful
I’m being even more careful than before about doing everyday things. It saddens me to do less and struggle more. I need to protect my lungs and conserve my energy. I’m examining every decision by asking myself, “Is this wise to do?” I strive to keep learning and improving how I care for myself and my ever-changing struggles with PF.
I’d love to hear from you!
Have you had any sudden downturns in your health? How have you handled having to adjust as your PF progresses? Do you have a scary experience with PF you’d like to share?
Please leave a comment below and share with those who could benefit via email or on social media.
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