Pulmonary fibrosis (PF) patients often experience a sudden worsening of their disease — this is referred to as an “acute exacerbation.” An event such as infection often triggers the exacerbation, and sometimes the cause is unknown.
About three weeks ago, I started needing more oxygen. I now require 1 extra liter per minute (lpm) while sitting, 3 extra lpm while standing, and 4-5 extra lpm while exercising. The change was quite a shock. I hadn’t been sick, but I had just returned from a trip with my husband to attend my 95-year-old father’s memorial service.
When we got home, I told my husband that I thought I’d done well on the trip and wasn’t as tired as I’d expected to be. I guess my lungs didn’t agree. After a week I noticed I wasn’t bouncing back. I saw my pulmonologist who agreed I wasn’t sick, but my lung function, measured by forced expiratory volume (FEV1) was definitely worse. It had fallen from 47 percent to 38 percent, which explained my need for more oxygen. While my doctor didn’t say the drop was due to getting overly tired, it was the only thing that had changed.
Life is harder
As you can imagine, my lung function decreasing by such a significant percentage is quite discouraging and has made life harder. I get tired more easily and need more help. I’m allowing myself to grieve. I am asking for more help from my husband and others — something I’d rather not do.
My new normal has also led me to prioritize how to spend my precious time and energy. I’m going to cut back on some activities and also make sure I take care of some things I’ve put off. I want to make sure my husband has all the information he needs to take care of me as my health gets worse. I’ll be writing some columns about this in the future and will share the checklists that I create.
It’s normal, but a shock
All PF patients fear an exacerbation. It’s one of those things you know is coming, but when it hits, it hits hard. I was sad for a few days and just watched Hallmark movies. I’m now in the “figuring out what to do now” phase. This involves praying and making lots of lists. Although I’ve retired as a marriage and family therapist, I spend some time each day on social media promoting the three books I’ve written, including the latest one for PF patients and their loved ones.
It’s been a blessing to connect with others online, but I’m not going to be able to keep doing all of that. I’m pondering what to keep and what to give up. All of these steps involve grieving new losses, which is healthy but hard to go through.
Compassion as our disease progresses
We need to be gentle with ourselves about is how hard it is to have a progressive lung disease. The reality is that over time the scarring in our lungs increases. When this happens, we need higher levels of supplemental oxygen to provide us with the amount our body needs. We get more tired and our limitations increase. We go out less over time. The progression of our disease requires adjustments to each change and this can be exhausting and discouraging. Being a friend to ourselves about what we’re going through can really help.
Here’s a short video I made about this:
We can show ourselves kindness and compassion by telling ourselves that:
- It’s OK to be learning how to manage this disease and not know how to do everything.
- I have a disease that is slowly progressing, and I will continue to adjust to my new normal with each change.
- It’s normal to be sad, angry, confused, and scared about each loss and challenge.
- I won’t be hard on myself for struggling or making mistakes.
- I’m doing the best I can, and I’m heroic for hanging in there.
- It’s OK that I may not know how to do this yet; I can learn.
I know I’m not the only one to go through an exacerbation. Call your doctor if you suddenly get worse over two to three days or even sooner if your symptoms are severe. Your doctor will order tests to figure out what is wrong and determine how to treat you; some patients require hospitalization, while others do not.
I’d love to hear from you!
Have you gone through an exacerbation? What tips can you share to make this a little easier?
Please leave a comment below and share with those who could benefit via email or on social media.
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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.