Coughing Is My Most Feared IPF Symptom

Coughing Is My Most Feared IPF Symptom
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Recently, a topic in the Pulmonary Fibrosis News Forums called “fits of cough” caught my attention. Reflecting on the topic brought back vivid memories of my own experience with coughing attacks.

Before my single-lung transplant, coughing spells sometimes lingered for up to 45 minutes. It always felt like I had to bring something up, but unfortunately, these were dry coughs.

It’s possible the coughing attacks activated a worse medical condition. Sometimes they wouldn’t end until I was soundly defeated. My oxygen saturation would decrease to dangerous levels, and I was exhausted to the point of nearly passing out.

I am a jovial person who likes to laugh and joke around. I also like to have a good belly laugh from time to time. But laughing triggered my coughing, so I had to stop hearty laughs and crack only a smile.

I had several of these intense coughing spells at work. Thankfully, my colleagues were caring and supportive. I could see they felt helpless and wanted to relieve my suffering, but nothing could be done to alleviate this symptom of idiopathic pulmonary fibrosis. I will always be grateful for the kindness of my colleagues, who showed me compassion at every step of my journey.

My friends also were understanding, and they never avoided me or looked at me with disdain when I coughed uncontrollably. They have shown me support and friendship since the beginning of my diagnosis. They were there to hand me tissues and wipe my face if needed, and they’re still here to this day.

I am fortunate to have so many people who care about me. Members of the Pulmonary Fibrosis News Forums often share that they’ve been ghosted by friends or even family members. I can’t relate to that, but I do have sympathy for anyone this has happened to. People have their reasons for doing certain things, but I have always been taught to do what is right. I have surrounded myself with people with similar values.

Not every cough turned into a marathon, but they were always burdensome. I felt as if I were walking on eggshells trying to avoid coughing. My doctor was aware of the problem but didn’t want to prescribe any medications for the cough because I would soon be listed for a transplant. He wanted me to avoid as many unnecessary medications as possible to alleviate the burden of side effects on my kidneys and liver. I agreed with his reasoning.

I am still just as fearful of coughing now as I was before my single-lung transplant. My right donor lung couldn’t be more perfect, but my left one is still fibrotic. My physician told me that the left fibrotic lung would occasionally continue to cause me small problems, and I still have a coughing spell from time to time. Most of the time, the coughing is due to humidity when I take a shower.

But I can enjoy a belly laugh again, and I hope to have many more for the next several years. I am extremely grateful to have the opportunity to laugh again.

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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.

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10 comments

  1. Hans Fink says:

    The “Cough” issue you describe certainly hit home with me.
    As you say, I also try not have good “belly-laugh” reactions & I do like to laugh a lot.
    Though there is hope on the horizon by research being done by one company, Algernon Pharmaceutical.
    More information on their research is available on their web site:
    https://algernonpharmaceuticals.com

    • Mark Koziol says:

      Hello Hans, thank you for reading and commenting. A good belly laugh is good for soul. I will check out the website, thanks for the info. Best wishes, Mark.

  2. Marlene Robinson says:

    Great read Mark I too have IPF being diagnosed 2015 and had the cough for years before diagnosis.
    My cough is productive and any sort of movement brings on a severe coughing fit so I cough most of the day, it is debilitating.

    Good news I am listed for single lung transplant (as I will be 70 this year) have been on wait list 15 months and can’t wait to be able to laugh, hiccup, sing, dance and breathe with out 02.

    So heartened to hear you are doing well.

    Marlene

    • Mark Koziol says:

      Hello Marlene, I appreciate you reading my column and responding. I can tell you have a wonderful spirit. Before you know it you will be living life to the fullest. I hope you have the greatest and longest belly laugh. All the coughing and struggling will be a distant memory after your transplant. I wish you the best of health. Please stay active and continue to exercise, it will help immensely in your recovery from surgery. Thank you and best wishes, Mark.

      • Abogaga says:

        My husband has IPF of both his lungs and is off and on antibiotics and steroids. He is 79 years old but physically strong. I would like to know how one can list him for lung transplant and which Dr to consult if he is a candidate for lung transplant. Is there any new Anti fibrosis drugs In the market that has been successful in treating Lung fibrosis ?

        • Mark Koziol says:

          Hello Abogaga, thank you for reading my column. Your husband would need a referral from his pulmonologist to receive an evaluation for a lung transplant. Because of his age he will be a high risk candidate. The only transplant center I know who performs lung transplants on a man of his age is the Cleveland Clinic. Last year they performed a lung transplant on an 80 year old man. From all accounts the gentleman is doing well. The only anti-fibrotic medicines currently approved are Ofev and Esbriet. Research is ongoing for other pharmaceutical companies. If you have anymore questions feel free to ask. Best wishes, mark.

          • Mark Koziol says:

            Hello Chuck, thank you for reading. I appreciate you offering a suggestion to suppress the almighty cough. This is a possibility for other readers to bring up to their doctors. Thank you again. Take care, Mark.

  3. Steve says:

    I too cough continuously for hours at a time on occasions. Have been for almost 10yrs now. Diagnosed IPF 2014, Cleveland Clinic. Been on Esbriet since around Dec. of 2014. In and out of hospital for lung exacerbations pumped with steroids and felt great (no coughing) for 3 days, then back to normal. Had MRI this Feb 2019 and my doc said I my fibrosis hasn’t progressed some but not much. So the Esbriet has been working. Finally developed a rash from it and had to discontinue it for a few months for my body to reset. Weaning back on it now. Just finished a clinical trial for RVT-1601. It helped quite a bit to minimize my coughing, but now that I’ve finished that I’m back to my coughing fits. Causes me massive headaches most of the time.

    • Mark Koziol says:

      Hello Steve, I was also diagnosed in 2014 at the clinic. Small world. Sorry to hear about your coughing but I am happy to hear there hasn’t been much progression of your fibrosis. I would also get headaches sometimes. Those weren’t fun times. I hope something comes on the market soon. Thank you for reading and take care. Mark

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