I Did Everything Right, So Why Did I End Up with Pulmonary Fibrosis?

I Did Everything Right, So Why Did I End Up with Pulmonary Fibrosis?
0
(0)

As I sit down to write this column, I am having a difficult day. Following a recent column about vulnerability, I heard from many readers who said my words encouraged them to express their own vulnerabilities. As a result of that feedback, I want to share that today I am struggling with the question of why. Why was I diagnosed with idiopathic pulmonary fibrosis (IPF), a fatal lung disease, as a young adult?

Since my IPF diagnosis in early 2016, and during the subsequent years of learning to live with it, I made a pact with myself that I wouldn’t ask why. We have no control over the cards we’re dealt in life, and sometimes the only choice we have is to face adversities head-on and do something positive with the experience.

Becoming a columnist for Pulmonary Fibrosis News was one of the best things I could have done following my diagnosis, and I have many online friends to thank for this experience and the positive opportunities that have emerged as a result. However, that doesn’t mean I can’t also struggle with why this happened.

When speaking to others about my diagnosis, they typically have many questions related to my childhood. They ask if I lived in a home with possible exposure to toxicities such as black mold or cleaning chemicals, and my answer is always no. My mom always kept a clean home, and our house was inspected annually for damage and hazards. She regularly kept up with things like changing the furnace filter and cleaning the lint traps in the dryer, so to my knowledge, there were no known household products or lung hazards that could have contributed to my development of IPF.

Another topic people ask about is secondhand smoke exposure. While I was around this occasionally as a child due to extended family members smoking, I never lived in a home where this was prevalent, and my exposure was minimal. We are constantly reminded about the dangers of regularly inhaling secondhand smoke. Compared with some friends whose parents smoked regularly, my exposure was minimal. So I can’t help but wonder why I ended up with IPF.

Although it’s different than IPF, developing pulmonary fibrosis (PF) as a secondary illness isn’t uncommon. For example, I know several friends who ended up with PF after radiation or chemotherapy treatments for cancer. I also am asked about whether I have an underlying autoimmune condition or had a chronic illness as a child that could have contributed to the development of IPF in young adulthood. I say no to this, too. Aside from the occasional ear infection and typical cold or flu viruses, I was a healthy and active child.

As a co-moderator of the Pulmonary Fibrosis News Forums, I am privileged to listen to many stories from our members and to offer my support. Some of those stories involve questions about familial PF and genetic links to this disease. Some people are affected by this cruel illness across several family members or generations. Because of this, it wasn’t a surprise that my diagnosing physician asked about my immediate and extended family’s history with lung diseases. While some diseases in my family may predispose me to a greater likelihood of developing them, no one in my maternal or paternal family had to deal with interstitial lung diseases. So why has this started with me?

Despite having many questions about why I ended up with this cruel lung disease as a young adult, I’ll likely never have satisfactory answers. Sometimes this is hard to accept because I wonder if I did something wrong. If that were the case, I’d like to identify what it was to ensure that others don’t repeat it. However, there are no known links to anything I did or was exposed to during my childhood that could have caused this fatal lung disease, and I need to accept that. It doesn’t mean that I can’t occasionally ponder the question of why this had to happen, but the important thing is to ensure that I don’t get stuck on why.

When I was first diagnosed with IPF, I considered myself unlucky. However, due to the friendships I’ve made, opportunities I’ve had, and lessons I’ve learned, this isn’t true. Remembering to be grateful every day helps me to cope with having a terminal lung disease as a young adult.

***

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!
×
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!
Latest Posts
  • isolating
  • isolating
  • isolating
  • isolating

How useful was this post?

Click on a star to rate it!

Average rating 0 / 5. Vote count: 0

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?

10 comments

    • Charlene Marshall says:

      Hi Larry,

      Thanks for writing! I get all of your comments and usually reply to them 🙂 Hmmm… I’ll email you privately and show you where to look to get your replies. Hopefully they are coming through okay. I always ‘approve’ your comments so they show up on the column comments section. Charlene.

  1. Wendy Dirks says:

    I’m so sorry you’re having a difficult day, Charlene – I can empathise completely. Of course you did nothing wrong. As one of those with familial PF, I wasn’t surprised at my diagnosis in my 60s, and I think it must be incredibly difficult, far more difficult, to be a young person with no risk factors like you. You’re such a strong and courageous person and all of us who read your columns appreciate your openness and helpfulness so very much. You’re making a difference in all of our lives and we can’t thank you enough for all you do.

    • Charlene Marshall says:

      Hi Wendy,

      Thanks so much for reading my column and reaching out via the comments. As always it is so nice to hear from you – our community is so lucky to have you! My difficult days have been plentiful as I continue to recover but some time from now when I am back to my baseline, it’ll have been worth it. This disease is just so cruel and I don’t often let myself ponder the “why” but sometimes you just can’t help it, you know? So sorry you are also dealing with this illness, I just can’t wait for a cure and I hope we’re all alive to celebrate it when it happens! I so appreciate your kind words, thank you for bringing a smile to my face and squashing the hard day I was having. I really appreciate you! 🙂
      Charlene.

  2. Marlene Butler says:

    How wonderful you are able to go to Australia. You seem extremely active. At 85 I too struggle with all your concerns,but find frailty is getting the better of me. I too was an ‘outdoor’ girl,and live in the country, so why is my nemesis too. I’m trying the Wei products, but am plagued with ‘sickness’. Thank you for all your info and for running the column. I live in the north of UK, and hope this reaches you. All best wishes MCB.

    • Charlene Marshall says:

      Hi Marlene,

      Thank you so much for reading my columns and reaching out via the comments! I was privileged to go to Australia three times over the years, the first two times were before I was diagnosed with IPF and I’ve only been back once since unfortunately. I was pretty active and only using 02 as needed, but I also became so sick in November and haven’t recovered well from that yet, so I am pretty inactive at the moment. Sorry to hear how this disease has affected you, and that you also ponder the ‘why’. It can be so tough – wishing you good thoughts Marlene. Your note has indeed reached me and lifted my spirits today 🙂
      Many thanks,
      Charlene.

    • Charlene Marshall says:

      Hi Rosemary,

      Thank you so much for reading my columns and reaching out via the comments. You truly brightened my day, thank you so much! While I wish this cruel disease never crept into our lives, we have no choice but to accept it and hopefully help others with it too. I’m so happy to hear my writing/comments help others. Thank you for your kind words!
      Charlene.

      • Debra Meffert says:

        So I totally understand, I was very active even though I have RA , the Humira helped me with that, however, I now have a new diagnosis of Pulmonary Fibrosis after many CT scans, chest X-rays, and most recent an open lung biopsy. I’m 66 , I have 3 horses but will probably have to sell them here in the near future. That was my hobby. But I’m thankful for my family, my husband is very supportive, I have 3 grown children and two wonderful grandsons. I absolutely hate that this happened, it’s a terrible disease. My chest is always hurting along with shortness of breath. I’m sorry for all of you that have to go through this!

        Debra Meffert

        • Charlene Marshall says:

          Hi Debra,

          Thanks so much for reading my columns and reaching out via the comments. Very sorry to hear you can relate to this topic – it is a tough one! The chest pain and shortness of breath can be really exhausting, but I pray that the disease progresses slowly for you. Glad to hear of your supportive and wonderful family, this is very important. Wishing you well and feel free to connect anytime.
          Charlene.

Leave a Comment

Your email address will not be published. Required fields are marked *