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  • Reading Suggestions for Patients with IPF

    Posted by Charlene Marshall on January 30, 2021 at 1:40 pm

    Hi Everyone,

    Happy Saturday!

    Just a quick question for our forum members this morning: does anyone have any recommended reads for patients living with IPF/PF? 

    Your suggestions can be novels (fiction or non), blogs, websites, etc. and can be on any topic but preferably related to pulmonary fibrosis or life with a chronic illness. I often enjoy reading columns from TheMighty because the articles are often from patients. I also love reading many of Jodi Picoult’s books as they often have stories about illness in them, from different perspectives of each character. This summer, another amazing author (Kristan Higgins) is releasing a book on a young woman living with IPF. The book will be called “Pack Up the Moon”, and has a dedication to yours truly (me) in it. I can’t wait to get my hands on the novel, but for now, thought I’d ask for reading recommendations from other patients living with IPF/PF.

     

    Thanks in advance for sharing!
    Charlene.

    Charlene Marshall replied 3 years ago 3 Members · 4 Replies
  • 4 Replies
  • nathan-m

    Member
    January 31, 2021 at 8:06 am

    We’re really enjoying these,

    The Unwinding of the Miracle

    The Five Invitations

    Breathe (James Nestor)

     

    (I’m new to this forum and so thankful for it.  My Dad was 69 and just died of IPF acute exacerbation, and his dad died at 67 of similar though they thought it was from asbestos at the time.  Others in the family have died of lung issues as well.  Me and my siblings are 34-45 and are trying to figure it all out now so this forum has been incredibly helpful as we researched for my Dad in his last weeks… and for ourselves now.  Thank you Charlene and everyone.  This is so helpful.  Peace to you… )

    Marc Marion’s Caring Bridge – https://www.caringbridge.org/visit/marcmarion

     

     

     

  • Charlene Marshall

    Member
    January 31, 2021 at 8:50 pm

    Hi @nathanseattle

    Thanks so much for sharing your book recommendations, and I’m glad you found our forums! I’ll definitely take a peak at the books you suggested. With it being freezing (beyond actually… about -21C here) it’s a perfect time to curl up with a new read.

    I’m so sorry to hear about the loss of your Dad and grandfather from this cruel lung disease. Thank you for sharing a bit of your story with us. I am in contact with a family (they’re just formulating their non-profit) and are doing some great work in better understanding familial/genetic links to IPF. Their story is similar to yours and the brothers (mid 40s I believe) – who are amazing – both carry the genes for developing PF. Of course they want to understand as much of it as possible. If you ever want to be put in touch with them, let me know and I’d be happy to ask if they want to connect.

     

    Warmest regards, and keep in touch. Thank you for the kind words for this forum!
    Char.

  • steven-mason

    Member
    February 3, 2021 at 7:30 pm

    My father died of ipf in 2003 and his sister died from it several years later. The genetic component of this I obviously find interesting. Charlene—I have been following your posts–I don’t know—perhaps a year or two. You bring much to the issue. I underwent a c-scan a year ago–which was negative. I hope I am not morbid but if I get it–I might look to oregon or other states so I do not pass the way my dad did in a drug induced coma on a respirator. He was retired U.S military and seeing such a physically strong man struggle to breathe and walk still causes me trauma.

  • Charlene Marshall

    Member
    February 4, 2021 at 9:26 am

    Hi @smason ,

    So sorry to hear of your father and sister’s death from IPF. This disease is cruel and has no boundaries! I’m really glad you found us, though sorry you had to, and that you’re finding my content interesting. I’m glad so far your ct-scan did not show evidence of IPF. There are a lot of really good people working on better understanding the genetic components of this disease. Hopefully soon there will be advancements, or better yet, a cure for those of us dealing with it. Take good care, and reach out for support around the end for your Dad and the trauma it caused. That can be hard to process on your own.
    Kind regards,
    Charlene.

     

     

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