Making Exercise Work for You as a PF Patient

Making Exercise Work for You as a PF Patient

We all know about the benefits of exercise and try our best to incorporate it into our lives. While engaging in physical activity is difficult when living with a chronic lung condition, doctors and physical therapists recommend that those with idiopathic pulmonary fibrosis (IPF) stay as active as possible. I know that exercise is important, but I struggle with finding and maintaining an exercise routine that is not overly demanding or exhausting for me.

I recently wrote a column about how I am managing increased breathlessness. While a chest X-ray revealed some “fuzziness,” that appears to have cleared after a low dose of prednisone. Thankfully, I don’t have a virus or bacterial infection, but I still wonder what might be causing this shortness of breath.

I spoke to my transplant coordinator about my challenges, and she advised me to enroll in a course of pulmonary rehabilitation. While I haven’t started the program yet, I have been evaluated by my physical therapist. We’ve worked out an exercise regimen that I can do at home to strengthen my lungs and the muscles surrounding them.

Exercising with poor lung function is incredibly difficult, and it feels counterproductive to exercise to relieve my shortness of breath. However, I hope that my new routine will better manage my symptoms long term. While I am willing to do anything to maintain my current lung function, I find exercise extremely challenging for several reasons, apart from the obvious one of feeling breathless.

Here are some of the ways I encourage myself to exercise:

  • Pacing with intervals: Before my IPF diagnosis, I enjoyed jogging and would challenge myself by extending my distance goals. While my abilities have drastically changed, I find playing mind games with myself helps to increase the length of time I can exercise overall. For example, I set targets to walk at specific speeds on the treadmill and I feel a sense of accomplishment when I can last longer at a faster pace. I add one extra minute incrementally and celebrate when I’ve achieved more than I had initially expected. I come from a competitive family, so completing a task I’ve set for myself, even if it is just in my mind, is satisfying.
  • Focus on something else: I’ve employed the tactic of distraction lately. Otherwise, I’ll watch the clock or timer while working out. I’ve been bringing my iPad to the treadmill and watching half an episode of my favorite TV show while walking — it helps the time go faster.
  • Mind over matter: This is easier said than done, especially when it comes to accomplishing something that I don’t enjoy. I often reward myself for my efforts, so if I achieve the exercise goals I’ve set on a specified number of nights per week, then I allow myself to spend more time on enjoyable activities. My strategy is similar to a child’s reward system and tends to work for me.
  • Drink plenty of water: Staying hydrated quenches my thirst while exercising and helps me avoid muscle injuries while being active. I experience stiff muscles and joints due to my diagnosis, so additional post-exercise pain can lead to an unwillingness to engage in any physical activity.
  • Schedule exercise: Because of the physical fatigue and breathlessness that exercising can cause for those living with IPF, it’s nearly impossible to exercise sporadically. Scheduling exercise around other activities can help ensure that it gets done. I rarely plan a walk on my treadmill when I still have household chores to do or before I’ve finished other tasks at the end of a day.

Do you have any tips to help make exercise a little easier for IPF/PF patients?

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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!
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9 comments

  1. Peggy Mcbride says:

    I’ve been following Charlene’s columns for some time while awaiting my husband’s transplant. I have learned SO much and it helped us ease the way while waiting. Now he is 4 weeks post surgery and doing well so far. Thanks to Charlene and this forum!

    • Charlene Marshall says:

      Hi Peggy,

      Thank you so much for writing to me and sharing your husband’s story — this started my day off on an amazing note, I am so happy for both of you! I am just returning home from the PFF Summit in Texas and learnt so much about transplant and had the opportunity to interact with some AMAZING transplantees. I am just so thrilled for your husband, please congratulate him from me and I am so happy you find these forums beneficial. Please keep in touch and let me know how he is doing…. I am so happy for you both! Thank you for making me smile today 🙂
      Char.

    • Charlene Marshall says:

      Hi Peggy,

      Thank you so much for reading my columns and connecting via the comments. It is so nice to hear from you, and it brings me a lot of joy to learn that others’ are benefitting from my column. While I never would have chosen this path of having IPF for myself, now I’d never remove myself from the community of support these forums and my columns have created. I’m so glad to be able to help! As for your husband’s surgery, I am so very happy for you and him!! Congratulations on a successful transplant and I hope he continues to do well for many years to come. Thank you for the update, I am thrilled for you both!
      Keep in touch 🙂
      Charlene

  2. Holly Patient says:

    Hi, Charlene. This is Holly, mother of Christie, who also writes for IPF News. I had a double lung transplant last March, after nearly three months in ICU on a ventilator. The importance of exercise pre- transplant was emphasized to me over and over again. Preparing me for a walk in the hospital hallways took about fifteen minutes, and the walk included a respiratory therapist and RT aid, a physical therapist and PT aid, sometimes an occupational therapist, always an RN, and usually a family member for moral support. I was put on a portable ventilator, was attached to an IV pole, and used a walker. Quite the production! We did this at least twice a day; I was always anxious beforehand and exhausted afterwards, but filled with a feeling of accomplishment. I grew stronger every day, my doctors and therapists were pleased, and numerous nurses and staff told me that post- transplant recovery would depend on daily exercise, both before and after transplant. Although I was incredibly weak after the surgery and felt that I had lost ground, my recovery was indeed rapid and steady, and I was discharged two weeks post- transplant.
    So, good for you in persevering; it will all be worth it. I employ several of the tips you describe to keep going and stay motivated, even now, eight months after my surgery. Little goals and rewards are helpful. Keep your eye on the prize!
    I always read your column, and I admire you greatly. Thank you for sharing.

    • Charlene Marshall says:

      Hi Holly,

      Thanks so much for reading my columns and reaching out! I so appreciate hearing from you, as I’ve learnt of your story through Christie and am so grateful you allow her to write about it, and have shared your experience as well. So happy your transplant was successful! So glad to hear you were able to walk and push through the struggle that it must have been to get up and walk on the ventilator. Thanks for sharing and the kind words on my column – I truly believe that we are stronger together, and any tips/tricks that might benefit us are important to share. Many thanks and wishing you the very best as you continue in your recovery.

      Kind regards,
      Charlene.

  3. jaime manriquez says:

    Hello charlene, aboout your post related to prednisone, Rmember few months ago I was complaining about my excess of phlegm, let me tell you, I digged into my medications cabinet out of desperation ,I found a still good bunch of Prednisone 20 mg pills, I´m taking half in mornings and half at nite, since a month the Phlegm is almost gone. Dr said, Prednisone we don t use anymore for IPF, Its really funny isn´t it
    Best refards
    jaime

    • Charlene Marshall says:

      Hi Jaime,

      So nice to hear from you, thanks for writing and letting us know how you’re doing. So fascinating that the Prednisone seems to be addressing the phlegm issue – I wonder if this means that it was related to a bacterial infection, as opposed to a direct cause of IPF? In any case I am glad that it is gone for you, that must be a relief! Keep me posted on how you’re doing, and wishing you the very best.
      Charlene.

  4. Suzanne Brennan says:

    I listen to the music I love! I am quite a bit older than you are but there’s nothing like some Motown classics (Temptations, Smoky Robinson and the Miracles, etc.) Brings my mind back a lot of years and makes me feel good, especially when biking on a stationary, recumbent bike. Plus the time passes quickly.

    I am a life long exerciser and continue to do as much as I can. I ran four marathons and countless 10Ks and other distances plus I did a short triathlon – all back in the 70’s, 80’s and 90’s.

    I do feel better after exercise so I try to do something every day!

    Good luck as you continue on your path!

    • Charlene Marshall says:

      Hi Suzanne,

      Thanks so much for reading my columns and reaching out via the comments. As always, it is lovely to hear from you! Glad you’ve found a solution ie. music to help encourage the exercise and make the time pass quickly. I should try this in addition to bringing my iPad down to the treadmill and watching 1 episode of a show. This has been my trick as of late: get hooked on a Netflix show and watch 1 episode while exercising… makes it a little bit easier, as you say.

      Thanks for sharing and kudos to you for your commitment to exercise. One thing I learnt at the PFF Summit was just how important this is for us!

      Take care,
      Charlene.

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