It Takes a Village to Survive Pulmonary Fibrosis

It Takes a Village to Survive Pulmonary Fibrosis
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You may be familiar with the proverb, “It takes a village to raise a child.” The phrase is believed to have originated from the Nigerian Igbo culture and is often cited in literature and popular media, most famously in Hillary Rodham Clinton’s 1996 book, “It Takes a Village.”

The meaning of this proverb resonates with me in the context of my illness. While I wouldn’t compare being chronically ill to the needs of a child, I believe that it also takes a village to help someone living with a chronic illness, especially when they endure frequent health setbacks and ongoing challenges.

The last two months have been incredibly difficult for me. Between hospitalizations and lifesaving interventions due to multiple bacterial and viral infections, my emotional stability has wavered. While many friends and healthcare professionals expected these difficulties after my ordeal, I’m reluctant to admit how hard it’s been and how close I was to giving up and allowing the negativity to consume me physically, mentally, and emotionally.

During times of adversity, I usually face my struggles head-on. However, on a few occasions during this recovery, I thought the challenge of getting well was too difficult. Thankfully, my friends didn’t let me give up.

I’m privileged to have people with me throughout my recovery and others cheering me on from afar. Their support has given me an overwhelming sense of gratitude and the realization that it takes a village to help someone live with idiopathic pulmonary fibrosis (IPF). That village doesn’t have to be composed of those who live geographically close to you or people you know in person.

I have enjoyed many benefits from having friends and family by my side during this trying time. However, online support communities and those who send their love from a distance also have brought me comfort. Taleena and Michelle, I don’t know what I would have done without you.

While it takes many people to help someone with a chronic illness due to caregiver burnout, each relationship brings something unique to the patient as well.

Following are some of the different groups that have sustained me during these difficult months:

  • Online community: Connecting with other IPF patients who understand what this disease is like is invaluable. Not only can they sympathize with what I’m going through and share their own experiences, but also they can offer advice about what helped them during their recovery. On a platform like the Pulmonary Fibrosis News Forums, fellow patients provide tips, share their own perspectives, and discuss topics relevant to our community.
  • Professionals and PF advocates: Those on the medical side of IPF have a unique lens in terms of a patient’s physical recovery and needs during an acute setback. Several medical professionals have offered their expertise to aid my recovery, including pulmonary rehabilitation tips, medication management, and exercise regimens to help me regain some strength. Additionally, some fierce caregiver advocates in the IPF community have shared their personal experiences with my loved ones to help them assist me through this trying time.
  • Supportive friends: From text messages from friends telling me they are thinking of me to dropping by with coffee and offering a listening ear when I need to process the emotional stuff, I couldn’t have gotten through this without my tightknit group of friends. While they may believe their gestures are small, the benefits of them being there and knowing me on a level that others don’t have allowed me to be vulnerable when I need to be.
  • Caring family: Family members who have assumed caregiving roles throughout this ordeal have given up so much for me. I couldn’t have survived without their help, whether they were making meals, caring for my dog, keeping others updated on my progress, or tending to my other needs. Their care, compassion, and physical and emotional support have sustained me through these difficult weeks.
  • Considerate colleagues: I’m lucky that I can call my colleagues friends. Not only have they checked in and offered support by phone and text message, they also have assumed my role in the office. Knowing that my tasks are taken care of allows me to focus on my recovery without worrying about work.

Who are the people in your village who help you to survive PF/IPF?

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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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12 comments

  1. In a very ironic twist, Charlene, my friend’s mom has recently been diagnosed with IPF (ironic given the book I’m writing). I just volunteered to be part of her village. I also sent her the link to your column. : )

    • Charlene Marshall says:

      Hi Kristan,

      So nice to hear from you, thanks so much for continuing to read and share my column! With that said, I am really sorry to hear of your friend’s Mom’s diagnosis of IPF. She’s very lucky to have you as part of her village/team — may the road, especially initially, be a smooth one for all of you. If your friend’s Mom is ever looking for support from another patient, you know how to reach me and please don’t hesitate to send her my way.

      Kind regards,
      Charlene.

  2. Sheila says:

    Charlene, you hang on in there. I am fairly new both to the workings of the internet and I P F. Having been diagnosed a year ago and coming to terms with all this disease throws at you I can empathise with your feelings of ‘is it worth the fight’? The answer is yes. Why? Because this beast must not be allowed to get the upper hand. I have vowed to fight it all the way and I am 80 years old! I am trying to ensure people are made aware of I P F. and the challenges it throws at you on a daily basis. Once diagnosed I looked on line to find out as much as possible about the disease and that is how I found your blog(is that the right word?) You and your followers are an inspiration so please be strong and know that many people are thinking of you.

    • Charlene Marshall says:

      Hi Sheila,

      Thank you so much for reading my columns and reaching out via the comments. I so appreciate your kind words and spending some of your energy reading my columns, thank you! You’re right – this fight is worth it, and we’re stronger together so when our emotions waiver, we need to remember how many are out there to support us. Kudos to you for your advocacy efforts and ensuring people are made aware of IPF. I know this isn’t an easy task when the disease takes so much energy from us. Feel free to reach out anytime, I’m glad you found my blog – yes that is the right word! If interested, please feel free to join us on the PF News forums too: http://www.pulmonaryfibrosisnews.com/forums .. there are a lot of great people on this site. Best wishes to you Sheila!
      Kind regards,
      Charlene.

  3. John Baron says:

    Hi Charlene!
    Just waned to tell you that I have followed your journey shortly after I was diagnosed with IPF in June of 2016. You have been an inspiration to me and to countless others. Keep your spirits up, and be grateful for being a candidate for transplant. My bilateral lung transplant was performed in August of 2018, and I’ve got over 17 months of breathing without supplemental oxygen! Lots of follow up appointments,
    tests, meds, rehab. I returned to work in September, and every day is a new challenge.
    Transplant can be a bumpy ride. Buckle up! Thanks again for sharing your journey.
    -John

    • Charlene Marshall says:

      Hi John,

      Thank you so much for reading my columns and reaching out via the comments. I always appreciate hearing from others, though always sorry to hear so many of us are living with this disease. If my writing about it helps anyone then it is certainly helpful/beneficial, thank you so much for letting me know it has been inspiration for you. I’m so happy to hear your transplant has gone well and been without supplemental oxygen for 17 months – I will pray that continues for a long time to come! Thanks again for your kind words. Charlene.

  4. Ann Jacob says:

    My dad has IPF. He was diagnosed 5 years ago. He is on 8 liters of oxygen around the clock. He is on Esbriet. He and his pulmonologist decided to stop the medication. He has lost most of his taste and smell. He is a realist and accepts his fate. He is positive and in great spirits even though he is homebound. He has great support of family and friends. Sorry for a long history. I wonder if he will ever get his taste or smell back now that he is off his medication?

    • Charlene Marshall says:

      Hi Ann,

      Thanks so much for reading my columns and reaching out via the comments. I’m sorry to hear of your Dad’s diagnosis and subsequent need for oxygen 24/7. That is not easy, I’m learning the hard way since I got sick and now am requiring it around the clock as well (and never did before). I’m glad to hear he is in good spirits, this is important (though tough!) and is surrounded by close family and friends. Sounds like you are a great daughter and advocate for him! I’m not sure about the taste/smell returning once he stops the Esbriet, it is a possibility depending on how the nerves recover. I’d ask his physician about this but hopefully so. Maybe a good question to ask in the PF forums if interested? Lots of patients there have been on Esbriet and may have some insight to share: http://www.pulmonaryfibrosisnews.com/forums

      Sincerely, Charlene.

  5. Elisabeth says:

    Hi Charlene,my husband has been diagnosed with pulmonary fibrosis last week. It came to a shock to me,please pray for him thanks Eliza

    • Charlene Marshall says:

      Hi Elisabeth,

      Thanks so much for reading my columns and reaching out via the comments. I’m really sorry to hear of your husband’s diagnosis of this cruel disease – please do take good care of your emotional and mental needs at this time. I remember how hard my diagnosis was at first, and how shocking it was. Feel free to reach out any time – I most definitely will keep him in my prayers.
      Charlene.

  6. Frances Rowe says:

    I was diagnosed with IPF July,2017! It’s been a hard road but I’m taking OFEV! Just started 20 days ago!I am a positive, praying woman and hoping for many more years of quality life!!

    • Charlene Marshall says:

      Hi Frances,

      Thanks so much for reading my columns and reaching out via the comments. Sorry to hear of your diagnosis and the subsequent hard road of living with this disease – it sure can cruel, huh? Hang in there and I really hope you’re tolerating the OFEV well. It has been helpful for me, I believe, so I hope it will be for you as well. Sending much positivity and lots of prayers to you! Write anytime 🙂
      Charlene.

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