Options for Care When IPF Makes Me Feel Unwell

Options for Care When IPF Makes Me Feel Unwell

younger than 30

It’s cold and flu season, and unfortunately, people with idiopathic pulmonary fibrosis (IPF) and compromised immune systems are bound to get sick. Despite our best efforts, it is likely that we’ll end up with the flu, a cold, or a more serious respiratory illness such as pneumonia. It is important to ensure we take steps to reduce the risks. We should stay away from those who are ill and regularly wash our hands with soap and hot water — not only hand sanitizer. However, even if we take precautions, we will probably get sick at least once during the season.

I’ve caught my first bad cold of the season. The virus has taken a lot out of me physically, mentally, and emotionally. I wrote recently about how anxiety-provoking it can be to have IPF and a cold because I worry that the virus will move to my lungs and lead to an exacerbation, which happened in May 2017. It was a very scary experience.

Thankfully, after a few days of rest and nursing my symptoms, I think I am on the mend because my cough, painful sinuses, sore throat, and headache seem to be better today. Over the last few days, I’ve been playing a mental game with myself about what I should do if my symptoms progress. My dilemma was that I wanted to be proactive but not overreactive. I also wanted to ensure my symptoms didn’t get worse. I’m not usually an anxious person, but I struggled with the decision about what I should do if I became very unwell.

Following are the options I considered:

  • Go to the hospital: I always feel a little guilty about going to the emergency room (ER). In mt family of medical professionals, we were encouraged to leave the ER for real emergencies and instead consider attending an urgent care or walk-in clinic. I wouldn’t hesitate to go to the ER if I had life-threatening symptoms, such as difficulty breathing, excessive bleeding, etc. Although I didn’t feel that my cold warranted an emergency, I was worried about how quickly it could become such a situation.
  • Call an after-hours service: My transplant center has an after-hours line for patients to call, which alerts a nurse via a pager. I thought about calling this number, but I realized that the nurse’s assessment would be based on the information I gave her, so her advice would probably be to go to the hospital.
  • Visit a doctor: My general practitioner, like many other doctors, is overloaded with patients and so she can’t always fit me in quickly. If my symptoms escalate, I don’t want to have to wait days for an appointment. I have the option of a walk-in clinic, though the staff at many of these locations are unfamiliar with IPF and other interstitial lung diseases. Diagnostic imaging is often off-site and I’m not keen on waiting one or two days for results. I am also concerned about exposure to other sick people in the waiting room.
  • Ask my nursing friends: I am lucky to have many nursing friends who are open to answering my questions about my illness. However, they are reluctant to provide information or advice if they are unsure, so their typical response is to call my doctor. I didn’t want to put any of them in a tough position this time, so I ruled out this option.
  • Wait it out: I didn’t want to overreact over a simple cold. I am glad I chose this option. I’m grateful that this virus hasn’t turned into anything worse so far, so I didn’t need to decide where to seek treatment after all.

How do you decide as an IPF/PF patient what type of care is best for an illness such as a cold?

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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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8 comments

    • Charlene Marshall says:

      Hi Sara,

      Thank you so much for your kind words, I really appreciate them. Thankfully, I think the cold is nearing the end and I am looking forward to feeling 100% again soon. Thanks again for reading my columns! 🙂

      Charlene.

      • Chuck says:

        Glad that your feeling better ! , I’m just starting with a ” cold ” for the past few days , ugh , headaches , bloody nose , and the ever present cough , aches pains the whole nine yards . But I’m resting as much as I can . So this is short , but I’ll get there.
        Your friend ,
        Chuck

        • Charlene Marshall says:

          Hi Chuck,

          So nice to hear from you, thanks for writing! That said, so sorry to hear you’re just starting with the cold now – I hope it passes quickly and that you get lots of rest to fight it off as best you can. Hang in there, it is such a pain. Glad you are resting!

          Take care,
          Charlene.

    • Charlene Marshall says:

      Hi Bill,

      Thanks for reading my columns and getting in touch via the comments. I haven’t been able to fully ascertain if it is a sinus infection yet, I think it is (fortunately) just symptoms of my cold wrecking havoc with my sinuses. They’re also on the mend now, thank goodness 🙂
      Take care,
      Charlene.

  1. Peter Terry says:

    I had a treatment for sinus problems that consisted of freezing nerves. It’s a cryotherapy that has been approved for a year by the FDA. It takes 45 minutes to accomplish in an office visit. Your sinus problems should improve in four to six weeks

    • Charlene Marshall says:

      Hi Peter,

      Thanks so much for reading my columns and getting in touch via the comments. I always love hearing from folks, especially those who have had similar issues to what I am experiencing and have successfully been able to treat it. I’ve never heard of cryotherapy before, but I will definitely look into it, thanks for sharing. It sounds minimally invasive too, which is always a bonus and it would be great if we experienced an improvement in our sinus issues 🙂

      Thanks again for sharing!
      Charlene.

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