A new diagnosis validates my mysterious breathlessness

Since my double-lung transplant seven years ago, I’ve struggled with breathlessness during exercise. I was used to this symptom while living with cystic fibrosis (CF) lungs, but I didn’t expect to deal with it post-transplant. It’s been frustrating that I can’t use my healthy lungs in the capacity that I’d like. The road to figuring out what’s wrong has been rigorous and emotional, but the issue is finally being addressed.

After my transplant, I couldn’t wait to start running without an oxygen tank in tow. Unfortunately, every time I did rigorous exercise, I would have hypoxic symptoms: breathlessness, horrible headaches, and the feeling that my throat was closing. I was scared and traumatized by experiencing these symptoms again because they felt too similar to life with CF lungs.

As I presented this issue to medical professionals, many didn’t take me seriously. Because the results of my lung function and stress tests were normal, some doctors said I must have been going too hard, too fast. They thought I merely needed to slow down.

I knew something was wrong, but I didn’t know what it was. And it was disheartening to not have help in figuring it out. I guess that’s a byproduct of having an invisible illness, sadly.

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Desperate for answers, I switched medical professionals a few times and finally found a doctor who listened to me. He believed me and ordered a series of tests to track down the issue. Having a doctor who takes me seriously and trusts my expertise with my own body is the most incredible gift.

Surfing through my body parts and organs to find the root cause was not a walk in the park. I endured a heart catheterization, stress test, echocardiogram, CT scans, extensive pulmonary function tests, six-minute walk tests, vascular surgery, and more that I can’t even remember.

The diagnostic test that brought the miraculous answer was a laryngoscopy. A medical professional stuck a metal tube with an attached minicamera up my nose and down my throat to examine my vocal cords. The camera showed that they immediately folded, indicating why I’ve been breathless while exercising. Essentially, my vocal cords were shutting off my oxygen supply, hindering my ability to breathe.

It turns out that I have vocal cord dysfunction and inspiratory laryngeal obstruction.

Getting the test done in the first place was challenging, as the symptoms can mimic other health issues. Getting the diagnosis itself was like trying to nail Jell-O to a wall.

The relief that washed over me made my eyes sweat. Validation, especially when it comes to my health, is priceless. Yes, it took nearly seven years. But the time melts away now that I know I can do something about it.

I’m currently working with a speech and language pathologist who’s helping me retrain my vocal cords and breath pattern to keep my airways open during exertion. My lungs are healthy, and my exercise tolerance should mirror that truth.

I know the heartache and desperation of sensing that something is wrong with your body but not having a tangible reason for it. If I can encourage other patients to do anything, it’s to trust your wisdom, to not give up when you encounter roadblocks, and to fight with everything you’ve got for what you need. Your life is worth it.

Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.