The Dramatic Highs and Lows of a Patient with Pulmonary Fibrosis

The Dramatic Highs and Lows of a Patient with Pulmonary Fibrosis

younger than 30

It is natural for people to experience highs and lows throughout their lives. Significant highs may include milestone events such as marriage, a baby’s birth, or retirement. The death of a loved one, loss of a job, or a relationship breakdown are some examples of the lows we can experience during our lifetimes.

This ebb and flow of good and bad events are part of life. However, I am sometimes caught off guard when I experience a dramatic shift from a high to a low, or vice versa.

As a patient living with idiopathic pulmonary fibrosis (IPF), I try to embrace as many of my days as possible and intentionally look for the highs. Before I was sick, I was able to enjoy the highs of international travel, graduations, and achieving my dream career. What I consider important now has dramatically shifted. I get just as much of a high, or an adrenaline rush, out of smaller things involving friends, family members, and the people I love most.

Since my IPF diagnosis, it feels as though there are more dramatic shifts from highs to lows than before, or perhaps I am just noticing them more. I also recognize that there are tough moments: doctor’s appointments that do not go well, losing friends to the same illness I have, or progression of my disease. What I didn’t expect was just how dramatic (and exhausting) these shifts can be. This is something I found out this week.

One item on my mom’s bucket list was to see one of her favorite country music performers in concert. An opportunity came up for me to purchase tickets to this concert as this artist was on her last tour in North America before retiring her singing career. My mom was thrilled. We enjoyed the concert together. What an adrenaline rush! To be among 10,000 other concertgoers who love the same music and could sing along to every song was very exciting and uplifting.

The effort of lugging my portable oxygen concentrator up into the stands with me was worth it. The energy in the stadium was something I’ll never forget. When the concert ended I was on such a high and had an adrenaline rush that I knew would take a few days to come down from.

Unfortunately, only two days later I had a medical appointment that did not go well, and that adrenaline rush quickly came to an end. I experienced an emotional crash in which my mood shifted dramatically from the high of the concert to the low of getting bad news related to my IPF. I thought that this news had stolen the joy from my night out with my mom and that made me even angrier.

It didn’t seem fair, but I suppose life isn’t always fair. When something good happens I relish in the joy and excitement it brings me. However, it can feel short-lived. I often fall ill after attending a social event due to germ exposure, or it takes me days to recover from something that takes that much energy. However, I don’t want to give up these outings.

What I need to work on moving forward is figuring out how to find some balance in the dramatic shift from a high to a low, and vice versa. When I experience a high, I really feel it, and it can change my outlook on so many things. If I hold onto feeling low for too long, it can be detrimental to my overall ability to cope with having IPF, and as a result, I need to find a way to balance out the dramatic highs and lows of living with IPF.

Do you experience these dramatic shifts while living with IPF/PF?  If so, how do you find a balance between the two? Check out the Pulmonary Fibrosis News forums  to discuss.

***

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!

8 comments

    • Charlene Marshall says:

      Thank you for reading my columns and for your kind words Mary. Wishing you nothing but the best!

      Kind regards,
      Charlene.

  1. Bill Bruce [ U.K.] says:

    I have OPF and am a regular reader of your columns which I find so helpful and uplifting. Thankyou and Godbless.

    • Charlene Marshall says:

      Hi Bill,

      Thank you so much for taking the time to read my columns and connect. I so appreciate hearing from others, although I wish it wasn’t IPF that connected us all. Thank you for your kind words, they really helped brighten my day. Sending you best wishes and prayers!
      Charlene.

  2. Kim menzel says:

    I enjoy reading your columns.by reading more information from other people has helped with my lows. Them days I have to take it very easy to the point of doing nothing until I rest a lot and feel better.some times I get a vacant hard cough.and have passed out. Just would like to know if others have experienced th same thing ?

    • Charlene Marshall says:

      Hi Kim,

      Thank you so much for reading my columns and for getting in touch with me via the comments. It is nice to hear from others who truly understand, isn’t it? I often feel less alone when I know others can relate to my experience. That sounds really scary for you, coughing and passing out. Does this happen often? A good place to ask others about this, and if they’ve had a similar experience would be in our PF News forums: https://pulmonaryfibrosisnews.com/forums/ it isn’t something I have experienced but others may have. Do you use an oximeter for your finger? If not, I’d recommend getting one so you can monitor your oxygen levels at home and keep an eye on them. Not sure if this is helpful, but wishing you the best Kim.

      Take care,
      Charlene.

  3. Angelique Lagat says:

    Thank you for sharing Charlene!
    I am relatively new to your columns. Sometimes a good cry is good when i have my ups and down. When I have my coughing attacks and it’s hard to breath, a good cry is just what I need to get back up. Somehow, my kids can always feel when I am not feeling too good and my good cry is just what they need to give me an extra hug.
    Wishing you good cries and a lot more laughter!

    • Charlene Marshall says:

      Hi Angelique,

      Thank you so much for reading my columns and for getting in touch via the comments. I always love hearing from others! You’re totally right – a good cry always helps, and I’ve certainly been doing a lot of that this week but actually not in a bad way. It’s really been quite cleansing for me. So glad you use this healthy outlet (although, crying can be exhausting it is better than some other unhealthy habits that is for sure) to get you through the tough times, like coughing attacks and shortness of breath episodes. Thanks again for writing – it’s so nice to hear that others can relate to my experiences.

      Wishing you nothing but the best!
      Charlene.

Leave a Comment

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