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    • #30860

      Hi Everyone,

      Just a quick note tonight as I am headed to bed shortly, but I hope you’re all doing well. We’ve often talked on these forums about how helpful peer-to-peer support is for us; whether that be in the form of groups, discussions or resources. Shortly after I was diagnosed with IPF in 2016, I sought out resources that looked at the holistic approach to what patients and caregivers need to navigate this journey. To my surprise, this resource didn’t exist nor were there many resources written from fellow patients. In late 2019, a vision was born to do just that.

      Myself, and 9 other IPF/interstitial lung disease (ILD) patients, alongside Noah Greenspan of the Pulmonary Wellness Foundation set out to create a resource in the form of a comprehensive guidebook to living with IPF/ILD. Two years later that book has been published and we’re thrilled to share it with the world! You can find more information about the book HERE along with pre-order information HERE.

      If you’ve read it, we’d love your feedback. Some of our very own forum members co-authored it with me, and sadly, we did lose three co-authors along the journey. We hope they are proud of our final product!

      Take care,

    • #30877
      Christie Patient

        So proud of you Charlene!!!! Can’t wait to hear how this book improves lives!

        Co-authors in the forums, please make yourselves known so that we may congratulate you on your achievement in publishing this book! 🙂

        • #30892

          Thank you so much @christie-patient – you’re so kind and always encouraging of me, which I deeply appreciate!!! I’m excited to hear how the IPF/PF community responds to this collective effort. I’ll tag the other forum members who contributed many hours and lots of energy to the writing of this book, despite it being a very difficult time in their lives for many. Thank you for your contributions @grace @ron-reid @renehakkenberg , it was such a pleasure working with you.

      • #30882
        Dicky Griffin

          I purchased the Kindle book today and selectively read a couple of chapters that I feared the authors would over step … they didn’t.  It seems like a good investment.   THANK YOU TO THE AUTHORS  … Since my PF-ILD diagnosis life has not been good.  I’m an old devil but was not intending to retire however my lung function has continued to slip during the last six years.   While I have fantastic family support and amazing doctors I have been mentally struggled.  A couple of things I have read today give me hope.   I will post again after I finish. DG from Nebraska

          • #30884

            Thank you for your kind words Dicky! I’m glad to hear the book has been helpful to you, and thank you for purchasing it. We’d love to hear your final review/feedback upon completion of reading it.

            Take care,

        • #30886
          Steve Dragoo

            Thank you dear friend for your shining example and continuous efforts on our behalf. Actions verbs intended…


            • #30891

              You are too kind my friend, @steve-dragoo! Thanks for your kind words, I’m excited for others to read this. It really was a labor of love from those of us living with this cruel disease to our fellow patients.
              Take care,

          • #30889
            Rosanne Matzek

              The book has shipped and I am anxiously waiting for it to arrive. Thank you and the other coauthors for the labor of love! It will surely benifet our group.

            • #30890

              Hi @r0sann3

              Thank you so much for ordering it – I’m excited to hear what fellow patients think of it, please let me know!

            • #30924
              Christine McCann

                Why is it so expensive?

              • #30927
                Grace McKeown

                  Hi everyone and especially you Charlene. I am responding to your tag Charlene.

                  Yes I was part of the patient group that contributed to ‘ Guide to Pulmonary Fibrosis and Interstitial Lung Disease” and I am so glad that Noah Greenspan and Charlene instigated this project.The group came together originally meeting regularly with Noah ( over midnight often for me,being in the UK ) and sharing ideas together. Charlene was instrumental in administering that group and did it so well. I had first contacted Charlene via this site so it was a fortuitoous meeting. It felt like, and was, a wonderful opportunity to share this journey with fellow ILD contributors. We are still meeting up regularly.

                  I am so glad that some of you have already seen it, and thank you for the kind words already expressed. I look forward to any further comments and ideas of areas in which the book may be useful. I intend giving a book to my consultant in the UK and discussing other channels  of influence with the respiratory department.



                  • #30961

                    Hi @grace – we couldn’t have done it without you and your dedication to meet with us virtually, sometimes in the middle of the night your time, was so admirable; thank you for that!! I look forward to celebrating with our small group of authors once everyone has their books via Zoom.

                    Much love, and thanks for your kind words!

                  • #30965
                    Noah Greenspan

                      It’s worth every cent!

                  • #30941

                      Hi all –

                      Ordered the book in early December.  It has been shipped and should arrive this Saturday.  Not sure why it took so long to be shipped.  Looking forward to reading it.



                      • #30962

                        Thanks for ordering it @marianne, I look forward to hearing your thoughts on it when you receive it. Not sure why it took so long to ship – third parties handle that not us as authors – but glad it is on its way to you now.
                        Take care,

                    • #30970
                      Desmond Sequeira

                        My pulmonary fibrosis was diagnosed in 2011 when I was already 80 and although I knew via Google that I had a life span 2 – 5 years, I did not take it too seriously.  Since then two hospitals have been checking and testing me twice a year and although there was a slow but steady deterioration, it didn’t prevent me from participating in all my activities (my wife in her wheelchair, and I decided to celebrate her 90th birthday in 2017 taking a cruise around the world), but now in my 91st year, I think COPD is catching up with me and I feel it’s time I start taking some of the very expensive medication available and which I’m entitled to free in Britain.  So far I’ve been depending on Yoga, meditation and a daily pill of vitamin D and nothing else.  I haven’t done much reading on the disease except what comes out in your journals, so I would be very happy indeed to read up on the disease in the just published guide.  I have to look after myself if only because my wife who is in a Carehome is dependent on me to visit her daily and when suitable wheel her in her chair to the nearby parks.  We have to accept whatever and wherever life takes us.  I hope the future whether in pain or joy, will be as interesting as the past.  Thank you everyone for keeping us informed and knowledgeable.


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