I’m Eagerly Anticipating PFF Summit 2019

I’m Eagerly Anticipating PFF Summit 2019

I am passionate about professional development and ongoing learning opportunities. While I have always thought about these in the context of my education or career, I am looking forward to the learning that will emerge from the PFF Summit 2019 in San Antonio.

I will be attending thanks to a few generous individuals and my own savings. I am eager to learn more about idiopathic pulmonary fibrosis (IPF) and share that information with my PF community. I plan to recap my experience through blog posts, columns, and forum posts. I believe that knowledge is power. The more we know, the better advocates we can be for ourselves and others.

My decision to attend was last minute. After my request for time off from work was approved, I was asked what I was most looking forward to learning at the summit. I was embarrassed to admit that I hadn’t thoroughly looked at the program schedule. So I said, “Everything.”

I have since reviewed what will be offered. And while my answer of “everything” is still true, I am most interested in these sessions:

  • Preparing for the future: This session on advance directives and estate planning will be facilitated by hospice and/or palliative care nurses. It might be the most difficult session to attend. I’d like to think that with advances in research and transplantation, I won’t need to include estate planning in my near future. But I think this is a good place to discuss future uncertainties with those who are not my family members.
  • Grief writing: As a trained therapist with an interest in grief, this workshop is naturally appealing to me. I think it will be beneficial to stretch my thinking about my own life in ways I’ve not considered. I enjoy journaling, and I expect it to be therapeutic, especially in the context of others who understand the complexity of emotions that accompany this cruel disease.
  • Health and wellness with pulmonary fibrosis: It’s no secret that healthy eating habits are important for anyone with a chronic illness. While it isn’t always easy to eat healthy or regularly due to medication side effects, it is even harder to exercise because of breathlessness and fatigue. I hope this session provides tips on exercise and general wellness, as well as information on improving mental and emotional well-being.
  • Pulmonary fibrosis and mental health: As a columnist for Pulmonary Fibrosis News and the IPF Foundation, I am privileged to connect with patients on a regular basis. One of the repeated concerns I hear from others is about their mental health while coping with a life-threatening lung disease. I am sometimes at a loss about what to tell them, because I also struggle with my mental health. I look forward to sharing what I learn with the people who connect with me regarding this topic.

These are just a few of the sessions I look forward to attending. I am also excited about networking and meeting other advocates in the PF community. If you’re going, I’ll see you there!

***

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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4 comments

  1. Angie Finkel says:

    Hi Charlene,
    I’m so glad that you’re attending and will be able to report the highlights back to all of us. We’re lucky to have a representative there!
    Enjoy!
    Angie

    • Charlene Marshall says:

      Thank you so much for your kind words Angie! My notebook, pens, highlighters and laptop are all ready to go to the Summit with lots of questions and hopefully good information to share back with this very special PF community. I look forward to sharing my learnings upon my return, thank you again for connecting.
      Kindest regards,
      Charlene.

  2. Chris S. says:

    Charlene,

    I have IPF was diagnosed in 2008, did a 6 week training, learned about pursed lip breathing which is helpful for going upstairs, joined Exercise for Health at the hospital, my oxygen level ranges between 96 and rarely 100%, but I am tired and sleep a lot or course I am 80, but want to be more active. I am one of two people in town who have got these results. I was on Azathioprene and Prednizone for a year but when the NIH research was stopped due to these making people worse and killing them I stopped.
    Chris

    • Charlene Marshall says:

      Hi Chris,

      Thank you so much for reading my columns and connecting via the comments. It is nice to hear from you, though sorry to hear of your IPF diagnosis. Glad you’re doing okay and kudos to you for joining the exercise/rehab program and learning about pursed lip breathing. These things are among the best things we can do for ourselves, so good work. Yes, the issue of long-term prednisone use was discussed at the Summit and the risks did not outweigh the benefits unfortunately. Are you on Ofev or Esbriet? Hopefully one of those are helping slow the progression for you and are tolerable.

      Thanks for writing.
      Charlene.

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