I Have Experienced These Physical Changes Since My IPF Diagnosis

I Have Experienced These Physical Changes Since My IPF Diagnosis

Chronic illnesses inevitably cause physical changes in a person’s body. These alterations include scars from surgery, procedures, and the placement of a medical device such as a port-a-cath or a peripherally-inserted central catheter, or PICC line. Since being diagnosed with idiopathic pulmonary fibrosis (IPF), I’ve experienced many physical changes — and while some of those differences are visible, others are not.

Earlier this year, fellow columnist Mark Koziol wrote about how his body has changed during his IPF journey. I was intrigued by his column and intended to share how my body has changed since my diagnosis. However, while I can relate to Mark’s experience pre-transplant, I have experienced additional physical changes that affect aspects of my life that I previously enjoyed, such as eating certain foods.

In the Pulmonary Fibrosis News Forums, we talk about the ways that this disease affects our lives. Although IPF is not limited to its physical impact, I’ve recently recognized the full effects of this disease on my body.

The Pulmonary Fibrosis News forums are a place to connect with other patients, share tips and talk about the latest research. Check them out today!

Following is a list of ways that IPF has, directly and indirectly, changed my body over the past three years. I am curious to know if others can relate to my experience.

  • Metallic taste and dry mouth: When I started taking immunosuppressant medications for IPF, I was advised to increase my water intake to help my kidneys function at their optimum. I found that drinking lots of water also helped to alleviate the dry mouth and metallic taste I’ve had since beginning the antifibrotic medication Ofev. My appetite has reduced due to nausea from the medication, and I sometimes experience breathlessness while eating as well.
  • Puffy face or “moon cheeks”: If you’ve ever been on prednisone, you’ll understand what I mean by “moon cheeks.” Since being diagnosed with IPF, and while taking steroids episodically to treat viruses and infections, I think that my face has changed its shape — it seems to be a little rounder and less narrow. Have you experienced this change, despite not taking steroids continually?
  • Lack of coordination, shaking, and weaker fine motor skills: Given the type of work that I do, these changes have been very challenging for me. I sometimes struggle with typing, writing, and taking notes due to shaking, which I attribute to the use of oxygen or steroids that are part of my long-term treatments. I feel frustrated that these symptoms are visible to others. I see concerned looks on the faces of my colleagues when I become discouraged over my ability to perform certain tasks.
  • Swollen legs and feet: Fluid retention and swelling in the feet can be incredibly painful and make walking long distances and finding comfortable shoes challenging. Thankfully, it doesn’t happen very often, and when it does, it is usually a sign that I am trying to do too much.
  • Muscle pain: As a 31-year-old, I get frustrated with muscle pain. I used to push my body to its limits through sporting activities and social events, but I never experienced the degree of muscle pain I’ve had since my diagnosis. I feel pain in my upper back and shoulders, which I believe is due to the chronic dry cough associated with IPF. I often visit a massage therapist to relieve my discomfort.

How has your body changed since your diagnosis? Please share in the comments below.

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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!

9 comments

  1. Mary Ann Canter says:

    I have pf but received a single lung transplant in Sept of 2018. Before the transplant I also had chest pain due to the cough. I found gabapentin helped diminish the cough and allowed the muscles to heal. Chewing gum also helped me. Anything to control the cough was a benefit. I never found prednisone to be helpful and I thought it was not indicated for pf, but perhaps it is for something related to the fibrosis. Hands shaking is not related to the fibrosis but probably to the meds. After the transplant I am on so many meds that my hands still shake, but I can type and manipulate just fine. It just does not look pretty and with more demanding activities like threading a needle, I need more time. I was on pirfenidone for a couple years and the digestive side effects were quite unpleasant. I found that the more food I ate the less nausea, but I gained weight. Try to get a transplant as soon as you can. Good luck!

    • Charlene Marshall says:

      Hi Mary Ann,

      Thank you so much for reading my columns and reaching out via the comments. Congratulations on your lung transplant, that is wonderful news and I hope you’re feeling stronger every day. Interesting that chewing gum helped with the cough, I will keep that little tid bit in mind for future use, and I’ve heard of gabapentin being helpful as well. Thanks again for sharing your experience and story with us! Best wishes to you.
      Charlene.

  2. Carmela says:

    and Charlene have a wonderful time in Hawaii!!! It s great you’re getting the trip in while weather is still beautiful. I am beach person also!

    I have metallic taste also and have unfortunately lost food tastes, not appetite, so still eat well. I also get the dry mouth and use the biotene for that.

    We’ve talked about the swelling. An update on my end-the primary dr wants me to have a contrast/no contrast eco done because of murmur which I’ve had for years. She wants to see if there have been any changes to the valve because of the pulmonary fibrosis.

    I do have the shakes mostly in my right hand. I have no idea what causes them; they’re not continuous. I attribute it to the RA and joint damage which has contracted the index finger and the pinky. I don’t know, have been to hand specialist, have had cortisone shots in the knuckles-none are lasting. I continue doing the exercises from PT; helps for a while.

    If I don’t get back on, HAVE A WONDERFUL trip!

    Are you scheduled for a Lung Transplant soon?

    Warmest wishes—Carmela

    • Charlene Marshall says:

      Hi Carmela,

      Thank you so much for getting in touch – as always, it is so nice to hear from you!

      Your kind words and well wishes about Hawaii mean a lot to me, thank you. I am still looking for a way to bring the “PF Forum and community” along with me on that trip, whether it is through digital videos, photos or posts about it while I am away. I can’t wait to share some pictures in the very least! Thanks for the update on how you’re doing, does the doctor think there is anything they can do for the valve if it has worsened as a result of PF? I hope the exercises and medications help with the other symptoms you’re experiencing. PLease keep us posted on how you’re doing! Thinking of you.
      Charlene.

  3. Hi Charlene,
    I’m part of your tribe. I have moon face from prednisone. Will need to stay at 15mg prednisone, for the rest of my life. I also have been having in the last year, back/shoulder pain. I have started using the rowing machine in the last 6 months, so I’m not sure if it’s connected to that, or how I sleep on my side/shoulders, or how I have the fan blowing at my face/shoulder area. Dry mouth….check. Also, the metallic taste, but only with my wine! I’ve had to give up most reds and drink mostly chardonnay now..I can deal with that though!!
    I noticed you never mentioned overheating…I often look like a rain shower head is being held over me. I’m going to have my thyroid checked just in case that is the reason. All I know is…just keep pushing through, enjoy yourself and have a good cry now and then. Plus, keep a cold bottle of Chardonnay on hand always!
    Cheers

  4. Please remove the word ‘what’ from my text in the 2nd last sentence..duh..thank you! ok..and remove Ruth Edwards..since that’s me too..wow..being 57 and not computer savvy..sucks!

    • Charlene Marshall says:

      Not too worry Erica, you did great! I completely understand the content of your reply and appreciate you reading my columns! Thanks for sharing your thoughts 🙂

      Doesn’t having the moon face feel awful sometimes? I wish there was a way to remain on Prednisone but get rid of this cosmetic side effect, I despise it! I hope you get some relief from the back/shoulder pain – oftentimes I get this and fear it is from my coughing. Good idea re: the thyroid for overheating. I am about to write a forum topic on this cause it has been so odd the last few weeks. Love the tip – I typically always have wine on hand as a back up for coping needs, but am enjoying a cold Chardonnay right now on these hot summer days. Great tips!

      Thanks again for writing and as always, wishing you the best!
      Charlene.

    • Charlene Marshall says:

      Hi Shirley,

      Thanks for reading my column and reaching out via the comments. Yes, this is a very popular topic among the PF News forums (https://pulmonaryfibrosisnews.com/forums/) seems that many of us experience the muscle cramping and or pain in our ribs due to the coughing at night. My leg cramps can be pretty bad as well, and I can only wonder if that is due to reduced oxygen? Something I hope to speak with my doctor about in September. I regularly get massages for relief of this pain, it usually helps even if it is just short term and the massage always helps me sleep better so I see it as a bonus.

      Take care,
      Charlene.

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