A Guide to Items Pulmonary Fibrosis Patients Pack for Trips

A Guide to Items Pulmonary Fibrosis Patients Pack for Trips
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As I continue to recover from an acute health setback I wrote about earlier this month, I’ve been seeking ways to prioritize and improve my mental health. While I’m not completely alone, it has been tough to remain indoors and away from the many people I love, especially as the summer weather emerges.

In an effort to prioritize my mental health this week, which has been particularly poor after another short hospital admission, I decided to spend some time at our cottage. I am happy to work from here, and I anticipate the change of scenery will help, along with calm walks on the beach at sunset. For safety, family members are close by at their cottages, but I’m happy it’s just my dog and me spending time away from the chaos of the city.

Since being diagnosed with IPF in 2016, I’ve focused on advocating for patients with this disease and spreading awareness about this terminal lung disease. I have been privileged to do that at Pulmonary Fibrosis News, the Pulmonary Wellness Foundation, and the Breathe Support Network. Through these platforms, I’ve been able to interact with patients and publicly share stories of my experience as a young adult with IPF, which has helped others better understand the disease over the years.

In line with these goals, and following a conversation with a friend while packing to go to the cottage earlier this week, I decided to share the supplies I need during a trip or anytime I’m away from home for an extended period. After the conversation, I realized that many people might be unaware of all the precautions and preparations people with IPF need before leaving home.

Following are items that likely wouldn’t be found on the packing list of someone who is healthy, but are common for those of us living with IPF.

  • Thermometer: A thermometer is important because I regularly have low-grade fevers, which often are the first sign I’m coming down with something else. I have several thermometers around my house and check my temperature several times a day. The cottage is hours away from my local transplant center, so it’s important to be proactive in monitoring fevers. I rarely leave home without a thermometer, and I packed it for my week away from home. 
  • Inhalers and refills: After falling ill last month, I now depend on multiple inhalers. I’m not sure how much my lungs have been damaged by that illness, but I do notice a difference in how I feel. I now need multiple inhalers at various times throughout the day to keep my IPF cough under control. Ensuring I had all eight of these, along with refills, was an unusual sight in the suitcase I packed for the cottage.
  • Extra nasal cannulas and tubing: While organizing these items, my friend asked why I was taking more, since I already had a nasal cannula connected to my portable oxygen concentrator (POC) and oxygen tank. The reason is that if anything punctures the cannula I am using, my ability to get oxygen through it would be compromised. Also, it occasionally gets caught under something and breaks. I always need to pack extras as a precaution.
  • Extra oxygen tanks: Along with my POC, I also have multiple small oxygen tanks with me in the event I lose power. While my POC battery keeps it going for awhile, an extended power outage is not uncommon at the cottage, given our proximity to the lake. Having oxygen tanks here reassures me that I will have enough oxygen during a power outage, or at least to give me time to reach another power source if needed.

 What are some unusual items for your packing list as a patient with IPF/PF? Please share in the comments below. 

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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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6 comments

  1. Chuck Harrison says:

    Hello my more than special friend,
    To say from February till this very day has been my favorite time of my life with this disease would be the first lie I have writtin to you ! A lot has happened to me in this time period it just boggles the mind . I have slipped so far so fast it’s almost comical , in fact it is . But in this letter I’m going to spend time with you , by reading of late you have had a rough ride , is something you can speak about or you wanT to hold off , Charlene I’m going to do something I usually never do . I am on messager I would like to know if you would contact me so I anD you talk privately , let me reassure there is nothing in the shadows here . If you wish I’ll be waiting
    Your friend as always

    • Charlene Marshall says:

      Hi Chuck,

      Thanks so much for writing my friend! I’m sad to hear that the disease progression continues for you, and that it’s been a tough few months. IPF is so awful! I’d love to correspond with you — I don’t use Facebook messenger a lot, but I will email you and see if we can connect that way or another way that works. Would be happy to keep in touch my friend!
      Charlene.

  2. Dave Caldwell says:

    My name is David. I have had ipf for 10 years and have recently started on ofev. Just starting my third month. Very expensive. Had a heart attack 3yrs ago. Diabetic and 76 years old. I am the poster boy for the corona virus. My good friend died last October after a failed lung transplant. He was 2 years younger and he only found out 2 years ago that he had the disease. Its frightening needless to say.

    • Charlene Marshall says:

      Hi David,

      Thanks so much for reading my columns and reaching out via the comments. I certainly agree with you re: the cost of Ofev, it is a very expensive drug. So sorry to hear of your friend’s unsuccessful lung transplant outcome. Will you pursue this route, Dave? It can be very scary to compare our experience/diagnosis with those of others, but important to remember that IPF “behaves” so differently in everyone. I hope you continue to do as well as possible with it. Thanks for writing!
      Charlene.

  3. Joy Hoffmann says:

    My main problem is the worry.
    I have not had a breathe test since being diagnosed in March 2020 and on OFEV since that time as well
    I will have a test in November 2020.
    I follow all health suggestions
    Eat right..exercise..walk…OLEV gives me no side effects. I have not had the much discussed cough.
    I see no benefit in monitoring my oxygen level.
    It seems that there is so much research being done with no cooperation among the researchers.
    It behooves the scientists to not find a cure because then how do they earn their keep?
    The FDA always drags their feet because that is their bread and butter.
    We all know that so much of the money goes to administrations costs.
    Yes, a cure could be found quite quickly if that was in their best interests
    As we know the rich get richer and the sick suffer.
    Cynical.you say?
    I say honest and realistic.

    • Charlene Marshall says:

      Hi Joy,

      Thank you so much for reading my columns and reaching out via the comments. I’m glad to hear you’re tolerating OFEV and that you’re focused on eating right and exercising where you can, that’s important. I know the worry and pondering can be overwhelming, and I hope your upcoming breathing test goes well. I don’t know if you read my column after I attended the PFF Summit in Texas last year but my frustrations were eased a lot when I realized how many good people are “in our corner” and wanting to find a cure for this disease. Hang in there, I know it can be discouraging but there are a lot of people working hard for us.

      Take care,
      Charlene.

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