I’m Anxious to Undergo a Test That Will Provoke My Shortness of Breath
Columnist Charlene Marshall prepares for cardiopulmonary exercise testing
Being short of breath is the worst feeling I’ve ever experienced. Sadly, it’s been getting progressively worse since I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016. Shortness of breath, or dyspnea, is one of the most common IPF symptoms.
It took 13 months of seeing multiple specialists to receive my diagnosis. To my surprise, this was a shorter time frame than most people with IPF face, although it felt like an eternity for me. During those 13 months, I experienced a range of symptoms, but I struggled to understand dyspnea and hypoxia, or low oxygen levels, the most.
Prior to being thrust into the lung disease world, I had no idea what shortness of breath felt like. When I was an avid swimmer, I probably would’ve likened it to completing a race in the pool. I only needed to take deep breaths and cease the exercise to return my breathing and heart rate to normal.
But shortness of breath caused by an interstitial lung disease is not the same as that caused by physical exertion. With IPF, I never get an opportunity to rest and return to “normal.”
As part of the diagnostic process, I had to undergo a plethora of tests. My lungs were thoroughly examined, along with my heart, esophagus, and sinuses, as conditions like acid reflux or chronic sinusitis can sometimes cause shortness of breath. My diagnosis journey taught me a great deal about dyspnea and how it differs from hypoxia.
Did you know that you can feel short of breath but have good oxygen levels? In my experience of moderating the Pulmonary Fibrosis News Forums and interacting with other patients online, this is a common yet frustrating experience. Without an obvious explanation for why someone might feel short of breath, physicians might not take the issue seriously if a patient isn’t hypoxic.
In my personal experience, being short of breath but having adequate oxygen levels is sometimes only considered an inconvenience. While the symptom may indeed be inconvenient, it’s also terrifying. Even when my oxygen levels are normal for me, feeling short of breath causes me a lot of anxiety.
That’s why I’m dreading my upcoming cardiopulmonary exercise test (CPET), which will provoke my IPF symptoms.
Why a CPET?
Following my second experience with COVID-19 earlier this year, I’ve felt significantly shorter of breath, and pulmonary function testing has revealed that I’ve lost nearly 11% of my lung function.
At my most recent pulmonology appointment, my doctor and I explored all the options for determining exactly what’s going on with my lungs post-COVID-19. I’ve had all possible imaging done, as it’s the least invasive and risky option, but unfortunately, it didn’t reveal much. My doctor also tried changing my medication regimen for a while, but it didn’t improve my breathing. As a result, she’s recommended the CPET as the next best option.
During the test, my pulmonology team will assess my lung function during an exercise challenge to better understand whether my shortness of breath is due to low oxygen levels from IPF or long-term effects of COVID-19. I’m hopeful for the latter, as I’d have a chance at recovery.
The CPET will be conducted in a hospital with both a registered nurse and my pulmonologist monitoring me. The idea of provoking my IPF symptoms makes me very uneasy, even if my doctor will be there. I must remember that its purpose is to help my medical team find an effective way to manage my symptoms.
To prepare for the test, I’ll be practicing mindfulness strategies to focus on completing it to the best of my ability. I completely trust my pulmonologist and know she would never recommend a CPET if it weren’t safe for me. But I’m still anxious.
Have you had a CPET done? Please share your experience 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.
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Comments
Rick McNeil
Hello Charlene,
Your articles have been wonderful. I hope you are more than satisfied with your tests.
Jofac O'Handlin
Dear Charlene,
I simpathise with you. I alsohave a test scheduled soon, for the 2nd December which I do not look forward to.
My decine is, I suspect, nearer 30%. However, on Tuesday I did something stupid which was a severe reminder of my condition. Visiting a 'house group' I parked some 80 yards from the house, and walked slowly up to the front door. This was OK. On leaving a couple of hours later, a friend exiting at the same time got into his Nissan Leaf (electric car). As I walked down the drive, he came up silently behind me. I then chose to try and run the remaining 40 or so yards to my car. It felt good, my perambulation was comfortable.
At my car I waved my friend goodbye, puffing a bit. Obviously the oxygen debit had not peaked. Suddenly I became distressed. Got sat down in the car and was seriously in distress. Wondering if I could keep panting long enough to raise the O2 levels in time. Realising that the action of the diaphragm was itself demanding an oxygen supply. This lasted for about 2 minutes. It proved extremely distressing.
Yes, I have been prescribed oxygen but was not carrying a cylinder. I will in future!
Needless to say I survived, but it has been a scare that will stay with me, and now most apprehensive of the upcoming test.
I hope that your test is not as distressing as you anticipate, and that the results also better than expected.
With my good wishes,
Joe
Joe B Wharton
Sorry about the spelling, my glasses are upstairs and care giver has not come down yet! Stairs another IPF problem!
Joe B Wharton
I take Cpet every couple of years to meet Medicare requirments for oxygen supplies. I feel safe as a respiratory nurse with a helper does the test. Walking for six minutes at aprescribed rate monitored for oxygen and pulse rate. I flunk at about 2.5 minutes hitting 88 or less on oxygen saturation. They continue on with oxygen to see what my adaquate flow rate. I feel safe professional people in hospital. We allways go have a nice meal after the test thats what i think about. Any way you have helped me thru this forum, so Blessings to you!
Kathleen Ryan
I think al of us share your anxieties, and it's so comforting to know we're not alone in what we're experiencing or feeling. My oxygen still remains good even though nothing else does! My shortness of breath is a constant worry when I try to make plans or do household chores, It's frustrating to find it so difficult to get a clear answer. I thank you for what you do, and how you bring so many of us together.
Steve Dragoo
Hi Friend,
In using a plethora of supplements, I have seen relative stability after the deadly exacerbation a couple of years ago that took me down for many months before I could even shave or bathe. Since I am in a country where ILD/IPF/PF are rare, most pulmonologists know little about it so I have relied on my wife, myself, and the internet. Also a huge shout out - without PF News I would not have known about many of the useful ideas that have helped.
What we do with what we have been handed is entirely on our shoulders at least as long as we are mostly cognizant. I fail many times but try more and more to be outwardly focused and have discovered many (all really) suffer from various and deep misery in their lives. Most won't talk about it because they don't know how or are looking in the wrong places for a solution.
My solution is simple - discover if God is real or not and that is intensely experiential individually. However, simply looking at the most complex machine ever made - the human body - how can one think it was an accident? If it is, I'm just gonna wait for that oil slick in my driveway to turn into a Bugatti Veyron...
Stay well and be encouraged - you are loved...
Steve
Liza van Dalen
I am 75 years old and was diagnosed with Pulmonary Fibrosis in 2018 that was apparently caused by Scleroderma/Systemic Sclerosis of which the earliest signs were in 2015. However, other autoimmune diseases were diagnosed earlier, Raynauds in 2002, Sjogrens in +/- 2006 and Lupus in 2015.
There are no support groups for Scleroderma or Pulmonary Fibrosis in South Africa were I stay so I rely on the various international news letters I subscribe to for the latest news. It will be very interesting to know whether there is anyone out there that followed this progressive path in developing Pulmonary Fibrosis. After contracting Covid a year ago I am now on supplement oxygen 24/7 at 3l and have to increase that to 4l with exercise.
Carolyn J. Ridpath
Thank you for your post. I am on oxygen 24/7 and have several lung diseases. I have never understood why I can experience shortness of breath without a serious drop in my oxygen levels. I was originally diagnosed with pulmonary fibrosis, but my pulmonologist decided that the first two CT scans were interpreted in error. The more recent one shows linear scarring. Based on symptoms, I am sticking with the IPF diagnosis, as is my primary. Your posting is the first thing I have seen that supports my observations.
Midge Sanford
I have PF and have been experiencing shortness of breath. I am not on oxygen (yet). I am using an inhaler and also just started using a nebulizer.
Does anyone have suggestions for how to lessen this shortness of breath? Do breathing exercises help? Or blowing up balloons?
I would appreciate any ideas! Thank you.