Pulmonary Fibrosis Is Like a Storm Cloud Over My Future

Pulmonary Fibrosis Is Like a Storm Cloud Over My Future
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It’s common for young adults in their early 30s to plan for their future. For some, this might include planning for a beautiful wedding or having a family. For others, it might mean traveling the world, buying a dream home, or landing the ideal job.

My ideal future would include each of these things, but thanks to idiopathic pulmonary fibrosis (IPF), my real future will be uncertain. This cruel, life-threatening lung disease makes planning for the future a daunting task.

Since my IPF diagnosis four years ago, I’ve spent a lot of time focused on having quality moments. This is still a work in progress, but I wish everyone would celebrate small moments with loved ones. No one is guaranteed a tomorrow.

While social distancing, I celebrated a retirement and a birthday last weekend with friends and family at our beach house. Later, while lying in bed and reflecting on my day, I realized that a milestone like retirement won’t be something I likely will be able to celebrate. That thought led to many others about my future, and how mine will be different than those of my peers.

I’ve been invited to other milestone celebrations in the next several months, including baby showers and birthdays. I plan to attend if masks are used and social distancing is practiced. But I often feel uneasy after attending these types of events. IPF has made my future more uncertain than for most other young adults. IPF feels like a storm cloud hovering over my future, clouding the path of what I might have achieved.

Some friends have asked why I don’t continue my life as if it were so-called normal, because no one knows what the future will hold. I agree to an extent, but I still think about how IPF has made accomplishing my goals more difficult, or how it will change the ideal future I had envisioned before I got sick.

With all of this in mind, the following are examples of how IPF has interfered with my dreams for the future.

Infertility

Many courageous colleagues at BioNews have written about this topic. While they have different conditions than I do, their grief from being unable to have children feels the same for me. I wasn’t even sure I wanted children, but the idea of that option being taken from me due to IPF is disheartening.

As my colleague Brittany Foster shares at Pulmonary Hypertension News, it’s hard not to feel angry, frustrated, and sad, not only with my body, but with the world in general. Although I hadn’t made up my mind about children, I wonder why this option was taken away from me.

Added financial hardships

Two years ago, I wrote about the additional costs of home ownership as a patient with IPF. Most often, this is due to prolonged time away from a job, but it also can be caused by many other things.

I love where I live, but I worry that my home won’t be as accessible as I need it to be as my disease progresses and my mobility decreases. It irritates me that my lung disease will have to be factored into the purchase of any future homes rather than me following my dreams as a young girl of having a a home in the country with a white picket fence, access to the ocean, and lots of land.

Traveling the world

I never wanted to choose between traveling and having a family of my own, so I thought I’d be spending my late teenage and early adult years traveling before I “settled down.” I am 32, and while I’m grateful for still being able to travel, it is becoming harder due to IPF.

Currently, I can fly with my FAA-approved portable oxygen concentrator (POC), but as my oxygen needs increase and a POC is no longer sufficient, my traveling days will need to cease until after transplant.

Starting a family, buying a home in the countryside, and traveling the world are three dreams I had for my future before I got sick. It’s hard not to feel like other aspects of my future will be clouded by this cruel lung disease as well.

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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, 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. Dear Charlene, I have not seen any other comments posted by your readers in response to this article, and I also put off commenting– I think it might be because we are simply sad to read these words, and you and all IPF folks deserve more than empty platitudes. We all have hope, but at the same time, need to face reality in order to plan for our best possible future. And that’s hard at times, especially these days. We can’t always be strong and positive, and everyone here knows and understands that. Thank you, Charlene, for your openness and honesty. I so look forward to that day when you can express a clear, open path forward, post- transplant. Sending you a huge hug.

    • Charlene Marshall says:

      Hi Holly,

      As always, thank you so much for reading my columns and reaching out via the comments. I love hearing from you! This was a tough topic to write about, and even tougher to share with the world but I think it’s important to broach vulnerability in my writing, in case it touches/resonates with others when they need it. Thank you for your kind words on this topic, and for always being such an inspiration and encouraging source of support. I can’t wait to meet you and Christie post transplant!
      Hugs,
      Char.

  2. Paul says:

    Hi Charlene,

    Nice piece. You’re young and without any debilitating co-morbidities your post-transplant prognosis will be good. I am four years post and actually getting fitter and stronger each year. Not a day back in hospital. Perhaps I’m lucky but do take hope that you can still live a long life. Just keep taking the drugs 🙂
    See you in Australia after the pandemic settles. The travel insurance is horrendous but we have great thoracic hospitals who will look after you if you have any complications.
    Paul – Byron Bay 🙂

    • Charlene Marshall says:

      Hi Paul,

      Thank you so much for reading my columns and reaching out via the comments. I really appreciate your kind words and positivity – the latter is what gets me through the tough days as well, along with hearing of stories like yours! Thank you for sharing and congratulations on how successful your transplant has been. How wonderful! I will definitely be back to Australia – it is my second favourite country, so when the dust settles post the pandemic, I’ll be back! 😉
      Take care,
      Char.

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