Living in Deep Fear of the Dreaded IPF Cough

Living in Deep Fear of the Dreaded IPF Cough
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In December, I wrote a column about slowly emerging from a month of being sick with pneumonia and the flu. I shared the importance of doing our best as patients living with idiopathic pulmonary fibrosis (IPF) to stay away from those who are sick, and why common illnesses pose a greater risk. I am still battling the effects of these illnesses, both physically and mentally.

I have heard about the myriad symptoms that affect patients living with IPF and how those symptoms are unique to each person’s experience. Some patients are plagued by the IPF cough and others don’t have a cough. I’ve heard professionals and advocates in the community talk about the difficulty of diagnosing and managing this disease because of how different it looks among patients. I met many patients at the Pulmonary Fibrosis Foundation summit in Texas who were dealing with a constant cough, but that isn’t something I experience on a regular basis.

Then I had a few “coughing spells” while I was in the hospital during my recent illnesses. I needed help from a percussion vest and a physical therapist to clear my lungs. The coughing was made worse because of the congestion, fluid, and infection in my lungs, combined with the fibrosis. It was difficult to breathe, and I began to fear coughing.

I now have a new understanding of what patients who experience the terrible, dry cough go through on a daily basis. While I was sympathetic to how difficult it must be to have the IPF cough, I now empathize with how it feels. Fortunately, my cough is subsiding as I heal. I know many patients aren’t this lucky.

I’ve had people compare breathlessness from illnesses such as bronchitis or a cold to living with IPF. While their intentions are good, I don’t believe IPF can compare to short-term viral or bacterial lung infections. With a cough from a lung infection, patients usually get relief from antibiotics. But those living with IPF will always experience a chronic cough. Tips on how to alleviate the IPF cough are a popular topic of discussion in our Pulmonary Fibrosis News Forums.

During my recent hospital admission, I learned the far-reaching effects of the IPF cough. The pain throughout my shoulders, upper back, and rib cage from coughing so hard was one of the worst I’d ever felt. Sometimes it felt like my upper torso was on fire, burning from the constant coughing and gasping for breath. I also felt intense pain along my sternum and had to ask for a small pillow to hug to lessen the impact while I was coughing.

Coughing and not being able to clear your lungs is terrifying. Because of the poor condition of my lungs, I couldn’t cough deeply enough to clear the congestion and it felt as though I was choking. I needed assurance from the medical staff that I wasn’t going to suffocate, and guidance to encourage a deeper, more consistent cough. Without their help, this experience would have been even more terrifying.

There is also an emotional aspect to dealing with a chronic cough. I live in fear of developing the chronic IPF cough because I never again want to experience these difficulties. On a few occasions, the coughing made me so fatigued that I couldn’t get up to use the restroom. Or I needed help sitting up. That was emotional for someone who is used to being strong and independent. These past few months have opened my eyes to the devastating effects of IPF, especially the chronic cough.

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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.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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12 comments

  1. Sally says:

    It’s not fun. I have had it for years and that is actually why I went to the pulmonologist six years ago. I was first diagnosed with NSIP then after a biopsy 10 months later, was diagnosed with IPF. It is constant. It hurts. It is embarrassing. I have had some relief in the last few months as he thinks I also have asthma, so prescribed Breo. I do not like being defined as the person that always coughs. Luckily, there are times of relief – like right now !! I treasure those hours or days.

    • Charlene Marshall says:

      Hi Sally,

      Thanks so much fo reading my column and reaching out via the comments. So sorry to hear you can relate to the fear, pain and embarrassment of the IPF – it sure is awful! I only hope the SCENIC trial for the IPF cough reveals some good insight into how patients living with this can be helped. Does the Breo help? Many of us are also living with asthma – myself included – and have been given inhalers, though I can’t really decide if they help or not yet. Glad you get some days of relief – hang on tightly to those days. Thanks for sharing your story.
      Char.

      • Sally says:

        If the Scenic trial gets a little closer to home, I will do it !! I have been in touch with them and the local COE about getting the trial in Portland. I do think the Breo has helped some, but still think I should have bought stock in Kleenex for the amount I use for all the mucous I cough up ! Sometimes it’s a dry cough.

        • Charlene Marshall says:

          Hi Sally,

          Thanks for connecting! Yes, it would be nice to see the Scenic trial expand and generate some positive/hopeful results for those living with the IPF cough. I met representatives from Respivant (offering the trial) at the PFF Summit in Texas and they are wonderful. I hope Portland gets added to the trial list. I hope you continue to find some relief for the cough! 🙂
          Char.

  2. DALE DRIES says:

    CHARLENE MY NAME IS DALE DRIES AND I HAVE HAD IPF SINCE 2013.
    MY DAD DIED FROM IT AND HE WAS 74.
    I AM 72 AND HOPING FOR A TRANSPLANT.
    I HAVE THE CRONIC COUGH. IT SUCKS!!! SOMETIMES I VOMIT FROM IT.
    I HAVE FOUND REGULAR RICOLA COUGH DROPS HELP VERY MUCH.
    I AM ALSO ON 600 MG OF GABAPENTIN TO SEE IF IT HELPS STOP THE COUGH.
    I AM ON O2 24/7 AT 8 TO 10 LPM.
    ALL OF THIS STINKS, BUT IT STILL BEATS A DIRT NAP!!!!!!!!!!!!!!

    • Charlene Marshall says:

      Hi Dale,

      Thanks so much for reading my columns and reaching out via the comments. I appreciate hearing a bit of your story, though I’m sorry to hear your Dad also experienced IPF and now you have it too. I’ll keep my fingers crossed you can receive a transplant, and that the cough subsides a bit for you. It is awful, isn’t it? I’m glad the cough drops and Gabapentin help – I’ve heard good things about Gabapentin and the IPF cough! Goodluck with everything and I sure admire your attitude! Thanks for writing 🙂
      Charlene.

  3. Gerry Banford says:

    Hi Charlene. Thank you for sharing your story. As I read your words I was brought to tears understanding just how you feel. Difference is I’m retired and just turned seventy this past summer. I’m blessed to have two amazing young men, my sons with wives and families of their own. Seven grandchildren and an unbelievable wife who recently saved my life as she brought me through pneumonia by insisting I eat by feeding me nutritious home made soups made from all things good for you. This was when I was choosing to let go and fade into history. Pneumonia made me week, listless and just too tired to care about getting well. I am also fighting IPF. I didn’t know it at the time I had pneumonia as I was just recently diagnosed with IPF so I understand the perspective you mentioned about keeping away from air born lung infections, pushing hard to stay physically active and staying strong. These things are necessary more now more than ever before in my life. My family, friends and especially my wife expect that of me and I’m not prepared to let go so easily now. My hope for you is to stay strong and know you are not alone in this illness. Between my wife and myself, we are reading, researching and vigilantly trying to arm ourselves with all we can so we can beat this IPF. Thank you for the share. Let’s endeavour to stay informed and to be strong.

    • Charlene Marshall says:

      Hi Gerry,

      Thank you so much for reading my column and reaching out via the comments. I so appreciate reading your kind, kind words, though sorry to hear you can understand and empathize with how the dreaded IPF cough feels. Having pneumonia with IPF is just so scary, I’m glad your wife was there to care for you. So important, as you say to do our best to stay healthy and to remain as strong as possible because this disease is cruel and ruthless. However, a positive body and mind will really help us in this fight! I’m really glad you have your family with you and see the fight worth it to stay with them. I’m with you and your wife, here is hoping we can beat this disease and a cure is found in the very near future. We’re stronger together, keep in touch and thanks again for your kind words.
      Charlene.

  4. My husband was diagnosed with IPF 2016 and chronic cough and got put on n O2 August of 2018. He appears to be getting more short of breath. To be eligible for trial he has to have lung biopsy of which we are arranging now. Emotionally we are drained and I broke my neck this summer from a fall, broke my thumb and blood clot in lung. We are planning Viking cruise for October but torn as $15,000 and what if we can’t go due to IPF getting worse. Seems we can only make short time plans.

    • Charlene Marshall says:

      Hi Barbara,

      Thanks so much for reading my columns and connecting via the comments. Though, so sorry to hear of your husband’s IPF diagnosis and your own health struggles as well. What a trying time for you both! The shortness of breath is very exhausting, and subsequently, emotional as its very hard for others to understand. I hope the biopsy goes well for him, and his recovery from that isn’t problematic. In terms of the cruise, a vacation is certainly a good idea but having proper precautions in place financially and physically is imperative. Is there any way you can get the trip insured so if you did need to cancel due to medical reasons you can get that money back? Something I’d recommend looking into if you can. Take care and feel free to write anytime.
      Charlene.

  5. Lesley Rowland says:

    So sorry to hear of your recent wrestle with health, as if the IPF isn’t enough to cope with! You have an amazing strength and so many of us appreciate your sympathy and diligence in posting in the column. I am 70, and will do my darndest to keep active and optimistic in the face of this wretched disease. Best wishes for 2020 from a NZ follower.

    • Charlene Marshall says:

      Hi Lesley,

      Thank you so much for reading my columns and reaching out via the comments. I so appreciate your kind words, and am happy to report that I am on the mend, albeit very slowly. Remaining active and optimistic is not always easy, but very important and kudos to you for trying to do that. I believe it ultimately helps us! Thanks again for the kind words on my column, and for following from NZ – a destination on my bucketlist!!! 🙂 Take good care and best wishes to you!
      Charlene.

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