A Week in the Life of an IPF Patient

A Week in the Life of an IPF Patient
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As someone living with idiopathic pulmonary fibrosis (IPF), I have enjoyed connecting with others on a similar illness trajectory as me, as well as those living with different kinds of illnesses, including different forms of pulmonary fibrosis. We all have things in common, as well as things we do differently. One commonality I have observed is that many of us are working from home as a result of our disease.

Sadly, a stigma still exists around invisible illnesses, and some people question why a patient might need to work at home. Worse, they might question whether or not an employee is even working while at home.

Recently, I spoke with a friend about working from home and how she feels guilty for needing to balance time at home versus time at the office. She spoke about how she fears her colleagues might question why she needs to work at home and how she feels this is what she needs to be successful in her job.

We talked about how helpful it is to be able to balance our workweek with time in the office and at home, and how flexibility is so important to us as patients.

As result of this conversation, I’m writing to raise awareness of what a week might look like for an IPF patient. Following is a recent week I had, to help others understand how many appointments patients can have, and why flexibility within our workweek is important.

  • Clinic follow-up: I regularly attend a clinic responsible for checking the function of my entire respiratory system. My care team runs bloodwork, chest X-rays, a six-minute-walk test, and pulmonary function tests. The day includes a discussion with a respirologist about how I am feeling. Clinic days are usually tiring for me and can last many hours. Clinical visits also include a lengthy drive into the city from where I live, often with excessive traffic, causing delays.
  • Additional bloodwork: When followed by several specialists, one doctor often requests different bloodwork than another. This means that I keep track of the requisitions, book my bloodwork in a lab, and take time out of my day to have blood drawn. While I understand the importance of this, it also takes time away from my workday since the lab hours are parallel to business hours. In the week I am outlining, I attended the clinic one day and followed up with additional bloodwork the very next afternoon.
  • Pulmonary rehabilitation: I participate in a pulmonary rehab program to help strengthen and maintain my current lung function. I do this at a specialty center, and their hours also mirror business hours. Thankfully, my rehab appointments aren’t long, although they are tiring and still need to take place during the workday. 
  • Physical therapy: Unfortunately, I was in a car accident not long ago and have muscle and soft tissue damage to my legs, which are requiring physical and cold compression therapy on a regular basis. Thankfully, this is temporary, but it was another appointment I had to add to my schedule.
  • Specialist follow-up(s): As previously mentioned, I see multiple specialists who are following my condition and monitoring the progression of my disease. Since IPF can impact more than just a patient’s lungs, it is not uncommon for other doctors to get involved in one’s care. In this particular week, I had an appointment back in the same city as my clinic, so it included a long drive and more traffic delays. It also included a lengthy wait for this specialist, as she is incredibly thorough with all of her patients. This appointment took place at the end of a week that was already full.

Some IPF patients regularly have all of these appointments and need to navigate the workweek based on a similar schedule. Working from home and flexing our days enables us to attend these appointments and still maintain a career. This is why working from home can be so important to patients living with a life-threatening illness.

***

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. Norm says:

    Nicely written. Even we retired folk experience similar challenges. Even those nearest to us do not understand and think we are just playing it.

    • Charlene Marshall says:

      Hi Norm,

      Thank you so much for reading my columns and contributing your comment. It really is difficult isn’t it, when others can’t understand the many difficulties that come with this disease? Sometimes sharing or explaining them with others can be equally as tiring as the illness itself. I hope others begin to show you compassion and grace as you continue to deal with your PF. Best wishes to you.

      Warmly,
      Charlene

  2. Renee Hill says:

    While I have only started working from home everyday since Feb 15th of this year, I am very grateful my job and boss allows it to be done. I laugh cause my boss is young (could be my oldest son) but he has such a understanding of people’s needs especially health wise. I’m not as far along with all the appts yet, only see my primary and lung doctor monthly. But I keep my boss informed of the lung doctor and just this week after seeing him, he wants to go another 6 weeks at home. While he thinks once the allergies/pollen/windy get out of here, it will let me breath easier and maybe if I feel like it go into the office once a week.

    But THANKS AGAIN Charlene for another great article. This comes at a time I’m going through it

    • Charlene Marshall says:

      Hi Renee,

      Thank you so much for reading my columns and contributing your comments — it is always nice to hear from others out there who are dealing with IPF as well. I am also so glad to hear that you boss is understanding and compassionate about your health needs. Doesn’t that just alleviate so much stress and worry for you? I was so scared to tell my work place of my diagnosis, and I feel so much relief that they are willing to support me (as much as they can) as I deal with this disease. Did your doctor suggest that you start working from home, or was this something you approached your boss about? Just curious if you feel like sharing. Regardless, I am so glad that your workplace is accommodating you! I hope you are able to start breathing easier soon 🙂

      Thanks again for connecting with me, and reading my columns. Wishing you all the best!
      Charlene

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