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Cisco Rafael

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@ciscorafael

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  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic The Importance of Patient-Centered Care in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 days, 15 hours ago

    As patients living with chronic and progressive diseases like idiopathic pulmonary fibrosis (IPF), it is inevitable that we will experience hospitalization at some point. Whether that be proactively ahead of a test or procedure, or reactively due to an exacerbation, illness, or disease progression; it is likely something you have or will…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic How Can Others Support Those Living with PF? in the forum Living with Pulmonary Fibrosis: 50+ 4 days, 15 hours ago

    As my disease progresses and my physical abilities lessen, I am often asked how others can support me. This is especially true in my workplace and oftentimes, I don’t know what to tell them.

    Sadly, idiopathic pulmonary fibrosis (IPF) is mostly an invisible illness, with the exception of supplemental oxygen use if patients have progressed to…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic Who Has Inspired You? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 4 days ago

    Like Christie has shared, January is a difficult month for me every year. Here in Canada, January is a very long, cold, and dreary month and this year there is no shortage of grey days; the sun hasn’t been out for a full day since before Christmas! While I’m not officially diagnosed with seasonal affective disorder (SAD), I really struggle…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic Welcome 2023! in the forum Living with Pulmonary Fibrosis: 50+ 1 month, 1 week ago

    Somehow another year has come and gone, and I remain as grateful as ever for the members on this forum. For another year, you have selflessly shared your personal experiences with others, inevitably making their journey a little easier. You have helped each other advocate for yourselves, laugh and virtually wiped away tears while navigating…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic Medication Storage & Transport in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 2 weeks ago

    Hello forum members,
    I hope you’re all gearing up for the holiday season.

    Since being diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016, I’ve been on many different medications. Sometimes the dosage of one drug changes, other times I’m taken off a medication and put on another and lately, it feels like I just keep getting…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall replied to the topic Personal emails: not on the forums please. in the forum Using Our Forums 1 month, 2 weeks ago

    Hi @steve-dragoo ,

    Not a problem at all, we just wanted to post that reminder to ensure emails aren’t being left publicly, most importantly to protect our members’ privacy. In a PM/DM is totally fine!

    Hope you’re doing as well as possible! think of you often.
    Char.

  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic Traditions & the Holiday Season in the forum Pre/Post Lung Transplant 1 month, 4 weeks ago

    Whether or not you celebrate Christmas, the holiday season can bring mixed emotions for many. Depending on family relationships, sometimes it’s stressful to see non-immediate family members or the chaos of the holidays can leave folks feeling exhausted. This is especially true for those of us living with IPF!

    On the flip side, the holiday…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic Personal emails: not on the forums please. in the forum Using Our Forums 2 months ago

    Hi Everyone,

    Thank you so much for your contributions to this site. It is so nice to see patients and caregivers interacting with one another, sharing experiences and knowledge that only those of us in the PF sphere can know; its truly wonderful to witness.

    Just a reminder: it is against the forum guidelines to leave your personal email…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic Protecting Your Lungs From Cold Temperatures in the forum Canadians Living with Pulmonary Fibrosis 2 months, 1 week ago


    Winter in Canada is known for its bitterly cold temperatures and significant snowfall amounts. While this is expected in December through March, it seems unseasonably early to be dealing with so much snow and cold in November. 

    Each year I spend time thinking about this and am always curious: how do other IPF patients proactively protect…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic C-PET Scan in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 months, 2 weeks ago

    Like most of us, I ended up catching COVID-19 despite my best efforts to avoid it. I had COVID early on in the pandemic, and again in spring 2022 … and I’ve paid for it! 

    My last pulmonary function test (PFT), which was shortly after COVID round 2, revealed a cumulative lung function loss of over 10%, which had my pulmonologist conc…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic Mindfulness & IPF in the forum Living with Pulmonary Fibrosis: 50+ 3 months, 1 week ago

    Arguably, the hardest part of living with idiopathic pulmonary fibrosis (IPF) is the physical implications this disease imposes upon people living with it. Simple tasks become difficult due to shortness of breath, chronic cough, and debilitating fatigue. As a result, it’s really hard to feel rested while living with this disease.

    I wrote a…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic Helping Others’ Understand Organ Donation in the forum Pre/Post Lung Transplant 3 months, 2 weeks ago

    As a patient living with idiopathic pulmonary fibrosis (IPF), a life-threatening and rare lung disease, I feel a sense of pressure to educate others on what it’s like to live with this disease.

    Part of that education feels like it’s constantly helping others understand that transplant is not a cure for IPF. It certainly is a great a…[Read more]

  • Profile picture of Karl

    Karl replied to the topic New Zoom meeting – taking the bull by the horn in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months, 2 weeks ago

    Hi Robert. Your situation may be like mine, which I’ll talk about later. My 2 cents: (1) You deserve a top IPF MD. Fire your Pomologist. Seek an MD whose primary practice is treating IPF as criteria #1. (2) Confirm the diagnosis you were given that says you have IPF. Get a sound assessment, particularly if you are not having breathing difficulty…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic Speed Bumps on the Post-Transplant Journey in the forum Pre/Post Lung Transplant 3 months, 3 weeks ago

    We talk about living with idiopathic pulmonary fibrosis (IPF) on these forums a lot, and I am so grateful for the people willing to share their experiences, knowledge, and valuable insights on this difficult topic. As a co-moderator of these forums, I often hear feedback that patients learning from other patients on this site is deeply…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall replied to the topic Medications Making Me Feel Worse – Is It Possible? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 4 months, 1 week ago

    Hi Charles,

    There’s been a lot of conversation about Zinc on these forums. If you use the search feature by going to the top right-hand side of the page and start typing in Zinc slowly, all the conversation threads should come up. I don’t have any personal experience to share with you, but I know a lot of people have started or continued taking…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall replied to the topic Medications Making Me Feel Worse – Is It Possible? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 4 months, 1 week ago

    Hi Susan,

    Thanks for sharing. Sorry to hear you deal with a terrible cough with lots of phlegm, that sounds terrible. I think the prescription of inhalers likely depends on what type of cough you have with IPF, dry or wet etc. Hopefully your doctors can find something else to help manage the cough!
    Take care,
    Charlene.

  • Profile picture of Charlene Marshall

    Charlene Marshall replied to the topic Medications Making Me Feel Worse – Is It Possible? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 4 months, 1 week ago

    Thanks for sharing your experience with us Michael, and sorry you can relate to medications making you feel worse. I am on the Respimat as well, but can no longer take Symbicort as its too hard for me to take a turbuhaler. I hope the discussion with your pulmonologist about this goes well.
    Take care,
    Char.

  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic How Pulmonary Fibrosis Complicates Simple Appointments and Everyday Tasks in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 months, 1 week ago

    As patients with a chronic illness, I know many of us have weeks that are full of medical appointments and we’re often left feeling both physically and mentally exhausted. Somehow many of my appointments land on the same week, and I reflected on this experience in a column I wrote about a month ago called, How Pulmonary Fibrosis Complicates Simple…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic Why the Word 'Rest' Triggers Me in the forum Living with Pulmonary Fibrosis: 50+ 4 months, 1 week ago

    The simple task of breathing should never be hard work. Unfortunately, those of us living with idiopathic pulmonary fibrosis (IPF) know that it can be hard work, and many of us wish that others would never take their respiratory health for granted.

    For those who have never had a respiratory condition and truly don’t know how it feels to be…[Read more]

  • Profile picture of Charlene Marshall

    Charlene Marshall started the topic Ernie Kully ♥️ in the forum In Loving Memory 4 months, 2 weeks ago

    In loving memory.

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This site 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.

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