Utilizing Technology While Living with Pulmonary Fibrosis

Utilizing Technology While Living with Pulmonary Fibrosis
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The world is a different place than it was a decade ago, especially in the realm of technology and social media. Smart devices track daily tasks, remind users to complete to-do lists, help with budgeting, and navigate driving routes. There are a number of ways technology can help patients living with a chronic illness such as idiopathic pulmonary fibrosis (IPF).

A popular topic on the Pulmonary Fibrosis News Forums is how to effectively monitor oxygen saturation and heart rate, both imperative to patients living with IPF. The most common answer is to buy a pulse oximeter and an electronic pulse meter. But those devices can be expensive, and would need to be worn around the clock to track abnormalities during different types of activities.

Recently, I was talking with my cousin about her new Apple Watch and its features that help her stay organized. She said that certain versions of the watch can recognize an emergency, such as a hard fall, and notify emergency services on your behalf. It left me thinking about how an Apple Watch could be beneficial for those of us living with IPF.

The Pulmonary Fibrosis News forums are a place to connect with other patients, share tips and talk about the latest research. Check them out today!

I also researched devices and technology in addition to the watch that recognize emergencies, track vitals, or help manage medications or appointments. Here are a few I want to share:

  • Medical ID: This is a feature of many smartphones, including the iPhone and Android. In an emergency, it allows first responders to access pertinent health information without a password for your phone. It lists information such as medical conditions, allergies, medications, blood type, and next of kin.
  • Apple Watch: As I mentioned, certain series of this device have built-in safety features that can detect a fall or a sudden drop in heart rate. All Apple Watches have an Emergency SOS function to notify emergency services with the touch of a button. For those who live alone with IPF, wearing an Apple Watch might be a safety net for when your phone is not nearby.
  • Apps to track health or fitness goals: A January 2018 article in Pulmonary Fibrosis News listed seven apps for managing chronic illness. The apps keep track of appointments and medication, chart pain, offer healthy eating tips, or help locate a specialist. All of those can contribute to a more positive experience while living with a chronic illness.
  • Fall-detection programs: Most often, these are used by seniors who live alone. A device is worn around the neck and connects to specialists via a phone line. Instead of using a phone, patients speak into the device when they need help. There is usually a monthly fee associated with these programs.
  • Fitbit: These devices are popular for their ability to track everything from your steps to your water intake. Fitbit can reflect your activity level and monitor your heart rate during exercise. Staying active is so important for patients living with IPF.

Are there other smart devices or technology that you use to help with your health or fitness goals while living with IPF/PF?

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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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4 comments

  1. Jonathan Poland says:

    Thank you for the fine article, but I’d like to point out that medical grade pulse oximeters ARE available IMHO. You can find them on Amazon.com for less than $20.00 US. Again IMHO, I think every Interstitial Lung Disease (ILD) patient should own one. As I sit here quietly, my blood oxygen is at 94% with a pulse. Yes they are a little bulky and can’t be worn 24×7, but at least they are a start. I carry mine with me everywhere. So when I lifted a heavy load into the back of my car, I knew immediately that I had dropped to 84% and recovered in 2 minutes. (I will be starting O2 for exercise soon I think.)

    • Charlene Marshall says:

      Hi Jonathan,

      Thanks for reading my columns and getting in touch via the comments. You’re correct – medical grade pulse oximeters are indeed available. Good thing to remind folks! I’m really glad you use yours regularly to monitor your saturations, good suggestion and I completely agree: a good thing for most people to have with ILDs. Thanks for writing!
      Charlene.

  2. Annette Andrew says:

    Thank you for your column. Well done. Has anyone found something to relieve the chronic cough associated with advanced IPF?
    Will try any suggestions.
    Thank you
    Annette

    • Charlene Marshall says:

      Hi Annette,

      Thank you so much for reading my columns and connecting via the comments. So sorry to hear you’re dealing with the chronic IPF cough, it is so difficult to deal with. I’ve heard a lot of patients say that Gabapentin (surprisingly!) has alleviated the cough, or they’re looking into a new clinical trial through Respivant to specifically address the cough: https://ipfcough.com/

      Not sure if this is helpful to you? Let me know if we can be of more assistance.
      Sincerely,
      Charlene.

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