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    • #33612

      Like most of us, I ended up catching COVID-19 despite my best efforts to avoid it. I had COVID early on in the pandemic, and again in spring 2022 … and I’ve paid for it! 

      My last pulmonary function test (PFT), which was shortly after COVID round 2, revealed a cumulative lung function loss of over 10%, which had my pulmonologist concerned. Thankfully, subsequent PFTs have shown that I’ve gained some of that back but my oxygen levels remain quite low, especially with exertion. 

      To get a better understanding of the hypoxia and pattern of fluctuating oxygen levels, I’ve been scheduled for a cardiopulmonary exercise test (C-PET). My pulmonologist will be monitoring me throughout this to ensure my safety, but it is to provoke breathlessness and hypoxia so they can understand what is happening. This is causing me a lot of anxiety, as the feeling of shortness of breath and hypoxia brings back some past memories of me being really sick.

      Has anyone had a C-PET test done? If so, can you share what it was like for you while also having idiopathic pulmonary fibrosis?

    • #33686
      Margaret
      Participant

      Hi Charlene, I have radiation induced pulmonary fibrosis rather than IPF (different scarring pattern and often responsive to corticosteroids) and I was doing a PFT (not a C-PET), but the tech inadvertently managed to provoke severe breathlessness, hypoxia and coughing by noticing that I was only using my good left lung and favoring my bad right lobes. She called in my pulmonologist who was able to observe this. The tech and I both feared something terrible had been triggered but my doctor was pleased to see exactly what was happening. I needed a shot of cortisone and O2 for a few hours but I did recover. I stayed in the pulmonary ILD clinic (no ER thankfully) where there were plenty of medical personnel to keep an eye on me while my doctor was seeing other patients. I thought I was doing well compared to my condition at diagnosis: I don’t need oxygen, have SOB only on exertion, and was having just 20 coughing fits a day rather than the original 120. My doctor, however, thought I could do better by learning to use the undamaged tissue in my right lung as well.

      I was able to see how the coughing fits sent my blood pressure and heart rate sky high and my O2 low, not good for my heart. The doctor explained that my body was instinctively protecting itself by keeping me from breathing deeply. He increased my current medication (inhaled fluticasone propionate) to the maximum dose and gave me some breathing exercises to start a week later after the higher dose had kicked in. I am now able to walk on more varied terrain, have only 2 or 3 coughing fits a day, and am beginning to work on stairs, hills, and carrying things. My QOL has improved and I imagine my heart is less stressed. It took making things worse to make them better.

      I understand your anxiety knowing what can happen, but your pulmonologist is familiar with your medical status and will be prepared to intervene appropriately whatever occurs. Hopefully your doctor will be able to use what he observes to get you back to your pre-COVID baseline. I sympathize with you there, too, since I was hospitalized with COVID in Feb of 2020, a year before my breast cancer diagnosis, when it first arrived in the US.  (A local family spent a few days in Wuhan when changing planes on a trip to Australia bringing the virus to my rural community.) During my PFT episode I never had that terrifying drowning feeling that I still have nightmares about. I hope your C-PET test goes well and yields information that improves things for you.

    • #33691
      Karen Martin
      Participant

      Hey, Charlene.  I’m dealing with the same issue as you, becoming SOB with exertion.  Levels are falling into the 60’s and 70’s.  I rebound quickly, but it is terrifying!  I’m glad to get this topic in discussion and appreciate Margaret’s sharing her information.  Looks as if I will be starting on some of those exercises myself.  I hope you will soon be doing much better.  Stay strong.

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