Learning to Catch My Breath With Interstitial Lung Disease

Lisa Weber avatar

by Lisa Weber |

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I stare at the two flights of stairs in front of me, wishing there was a magic elevator. With no other choice, I start climbing, slowly. Suddenly, my breathing is shallow. I inhale and exhale rapidly, my lungs desperate for air.

Grasping the handrail, I steady myself and finally reach the top, dizzy and lightheaded. Trying not to look distressed, I casually lean against a wall for support while praying I don’t pass out. I focus on controlling my breathing and do my best to ignore the sensation that I’m dying from a lack of oxygen.

To me, most people take the act of breathing for granted. I was taught that it’s a natural function, something we all do without thinking about it. I believed this until my own lungs started to become stiff and scarred with fibrotic tissue. You don’t know what you’ve got until it’s gone!

Interstitial lung disease has robbed me of the effortless breaths I will never stop longing for.

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Breathing isn’t easy anymore

Lung disease feels like I can’t take in enough air. It’s like an elephant has parked its rear end on my chest and refuses to move. It feels like the elephant’s constantly pushing against my lungs and not letting them expand. The sensation is similar to running until you’re out of breath and then breathing through one of those thin, little coffee straws.

Making matters worse, my lungs are constantly “angry.” I feel a burning sensation when I gasp for air, like a match being lit inside my chest. Between the burning and the suffocating sensation, I’m constantly in a state of panic. I certainly miss being unaware of taking every breath!

Medications prevent it from worsening

Nothing can cure or reverse the damage, but the right medications can help to slow it. It’s important to work with a good pulmonologist to find the best fit. No two people are alike, and treatments are definitely not one size fits all. Frankly, I’ll take anything my specialists want me to. I can’t imagine what life would be like if things get even worse.

If you’ve been recently diagnosed and in a similar situation, once you find a good pulmonologist, make sure to keep your appointments. Disease progression is different for everyone, so you may need to be seen several times a year. This is to repeat diagnostic exams regularly to catch lung disease in its early stages, or to monitor progression if there’s already damage. Remember, damage cannot be cured, but it is more easily treated the sooner it’s caught.

Pulmonary rehabilitation helps me

I strongly urge anyone with disease-related lung involvement to look into pulmonary rehabilitation. These therapy sessions teach diaphragmatic breathing and exercises that stretch and work muscles to help strengthen the lungs. Of course, consult your healthcare team before making any treatment or rehabilitation decisions.

Diaphragmatic breathing helps to retrain the body so that stomach muscles work with the diaphragm, which allows the most space for lungs to expand. It’s a controlled way of breathing that facilitates a person getting the most amount of air. This, in turn, helps them to relax and stay calm, even during moments when it can feel like being strangled.

It’s best to let professionals teach this strategy, but essentially it entails thinking of the stomach like a balloon. While inhaling for two counts, a person can expand their tummy like blowing up a balloon. Then, exhaling for four counts is like deflating the balloon. It feels unnatural at first, but if repeated enough, it becomes second nature. I find that it’s a great tool to help me calm down when I’m breathless.

Other exercises

During pulmonary rehabilitation, I also do stretches that help to prepare my chest for taking the deepest breaths it’s capable of. Because every person’s abilities are different, I don’t know which stretches are the best for this, but I will say that they are similar to easy yoga stretches that can be done while seated in a chair.

After stretching, I do arm and leg exercises to challenge my lungs with heavier breathing. A good therapist starts their patients off slowly with this so that they don’t push themselves too hard. The idea is to slowly increase the heart rate in order to practice controlled breathing.

It’s worth it

For people with lung disease, exercise is challenging. But pulmonary rehabilitation can help the lungs work more efficiently, and possibly even strengthen them. My pulmonologist always tells me that I have no control over the scarring, but I can control how strong my muscles are to fight against it. I’ll do anything if it helps me stay stronger than scleroderma.

Note: Scleroderma 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 Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.


June Amy avatar

June Amy

I have the same so I do sympathise with you. We have bought a bungalow now to make it easier but do find our sloped garden challenging, but hey, it could be so much worse, at least we are alive and kicking, take care.

Michele Lamb avatar

Michele Lamb

Hi I have had scleroderma with ILD for almost 15 years, my pulmonary doctor said at the start I had slow progressive disease, which has been over the past five years progressing!
I have been on a drug Mycophenolate low dose for 2 years but am waiting now for a further consultation and lung function test as I am struggling to breath, getting from room to room.


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