Reflecting on My One Year Post-Diagnosis

Reflecting on My One Year Post-Diagnosis

younger than 30
April 7 has arrived just like any other day (as I expected it would), but it holds so much more significance and meaning for me now. After 13 months of testing and various appointments, it was confirmed that I had idiopathic pulmonary fibrosis (IPF) on April 7, 2016, which is a date I’ll never forget. Truthfully, I am not really sure how I am feeling now that my one-year post-IPF diagnosis date has arrived.

I’ll never forget hearing my specialist tell me that due to my age and being otherwise healthy, he was not sure how this disease would manifest or progress. He told me that things may not change quickly for me, and that I may not experience physical symptoms of IPF for several years. He also told me that it might progress quickly — that it would be hard to predict. Time would determine how fast or slow IPF would invade my life. That invasion has been quick, and whether it had been fast or slow, I never would have guessed how much IPF could have impacted my life in one year.

Reflecting back on this past year, I think the three biggest things that have changed for me are my physical abilities, emotional responses, and my social relationships.

My physical abilities have been significantly impacted because IPF is a disease of the lungs, and the lungs are one of the most detrimental organs for survival. The two biggest physical changes for me have been my increased episodes of dyspnea and pain throughout my back and chest due to poor lung function. I have mentioned before that I loved to run, maybe not the physical act of it but certainly the “runner’s high” after completing a run. I miss that, I miss strapping on my shoes and going out just as the sun is going down to reflect on the day through an outdoor run.

Now, I sometimes feel breathless climbing stairs, or walking on my treadmill in the basement. I also have to have my oxygen on more times than not when I am on the treadmill. I manage the shortness of breath episodes as best I can, as well as the pain throughout my shoulders, back and chest. This seems to be my new normal now, and I’ll continue adjusting to it slowly but surely.

The emotional changes are harder to summarize. I would like to blame those changes on the steroids that I am taking, but I know part of my emotional swings come not only from medication. They also come from coping with the fact that IPF is a life-threatening disease. The idea that my life might be shortened leaves me feeling cheated, as though I have done something wrong. The knowledge that there are people who treat their bodies far worse than me through their own choices and don’t have to face any health ailments is upsetting to me. I don’t want anyone to face health challenges, but the fact that this has crept into my life for no known reason overwhelms me emotionally, and sometimes I don’t channel those emotions well.

With any type of dark time in your life, especially one as serious as a life-threatening health event, you come to realize who your close friends are. My social relationships have changed significantly since my diagnosis. I don’t mean that anyone has deliberately walked away from being my friend, but there have been people who don’t know what to say or how to cope with it. And as a result, our relationships have changed. They’ve also changed because I don’t have the energy that I used to. It has become harder to keep in regular contact with many of my friends through texting, calling or visiting.

My relationship with my family has changed a bit as well. In some ways I have grown closer to some family members, and in others I have drifted further apart. With two particular friends, my relationship has been strengthened beyond more than I could ever ask for, and for that I am grateful.

It’s amazing, really, how much can change in 365 days. I may have been having symptoms of IPF for longer than a year (seeing as it took so long for me to get diagnosed), but living with a life-threatening illness really does change things for the better and for the worse. Today has certainly been a day of reflection.

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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!

6 comments

  1. MarshaN says:

    You are describing my journey although I was just diagnosed on January 10 of this year.
    I was completely blindsided by some of my friends reaction but from what you said, that dies happen.
    Stay strong and live your life to the fullest

  2. Sherry Siegel says:

    Hi, Charlene,
    I always read your posts & find them interesting, inspiring, & thought-provoking — but I’ve never commented. Just wanted you to know that you are being read & appreciated. Thank you!
    Best wishes,
    Sherry (Siegel)
    PS – and yes, I did I look up “underwater hockey” because of you!

  3. Pam says:

    I too have IPF. I was diagnosed 14 months ago. I’m not on steroids or any medicine . I’m only on oxygen 24/7. I totally understand your thoughts. Thank you for sharing.

  4. Marilyn Olson Jacob says:

    HI Charlene, I totally understand what you are going through. I have been through it ,all the stages denial, acceptance etc but at a later age 58, 2008. Hopefully since you are healthy and strong so you can qualify to get on the transplant list. I was on the list one month to the day when I received a call saying they had lung for me. I had my transplant on April 5, 2010. Not saying it was all easy for the first 3-4 months after surgery, lots of medicines to get used to in your body, ups and downs emotions etc. it does get better, I just celebrated my 7 yr transplant anniversary his year on April 5th.
    Never give up hope, listen to your doctors, eat healthy, pray and most of all stay positive. Friends and family are praying for you to. Please feel free to email or message me on FB for support, questions, anything.??????????

  5. Tracey Slatter says:

    Hi all
    I have formed a support group called IPF Breathe Easy for those who wish to join – its a closed group on facebook for IPF sufferers & carers which provides support, advice, friendships and even some laughs from time to time. The members are wonderful.

    • terry calvert says:

      Hi tracey> My name is terry, i was diagnosed with IPF last febuary.
      Im on esbriet an now oxgyen. Im 65 yrs old and still working part time.
      Can you please tell me how I can go about some kind of support group.Thank You for your time.

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