Shameless Plug: New IPF/ILD book - Pulmonary Fibrosis Awareness & Advocacy

Pulmonary Fibrosis Awareness & Advocacy

Shameless Plug: New IPF/ILD book

Posted by Bill S on February 7, 2022 at 5:00 pm

Charlene, Thanks so very much for such an informative book. Noah Greenspan and all of you collaborators are such a light. I have been in isolation by my pulmonologist by having prescribed Ofev being his only intervention with no other recommendations. I’m in the process of finding a new team.

Bill S

Charlene Marshall replied 2 years, 9 months ago 5 Members · 9 Replies
9 Replies

Charlene Marshall

Member
February 13, 2022 at 9:40 am

Hi @williamschumann,

Thanks so much for your kind words regarding the book and I hope it helps give you some information that is beneficial. It truly comes “from patients, for patients”. It’s always smart to seek out a second opinion, especially when the only recommendation for IPF is an anti-fibrotic therapy. I hope you can find a collaborative team that is helpful and more supportive. Take care and thanks again for reading our book!
Char.
Christopher Leather

Member
February 18, 2022 at 10:41 am

Where will I find the book ‘From Patients for Patients’.

Thank you

Christopher194678
- Charlene Marshall
  
  Member
  February 19, 2022 at 11:09 am
  
  Hi Christopher,
  
  You can currently purchase it here:
  
  https://store.bookbaby.com/book/guide-to-pulmonary-fibrosis-and-interstitial-lung-diseases
  
  Or on Amazon as of March 14th. Hope that helps!
  Char.
  - Gordon B Sandmire
    
    Member
    February 22, 2022 at 9:24 pm
    
    I have it reserved on Amazon but didn’t know when it would be available til now. March 14 it looks like. I’m sure I will get much info from it.
  - Gordon B Sandmire
    
    Member
    March 22, 2022 at 4:05 pm
    
    Hi Charlene, I received my copy from Amazon last week and have read about a third of it . So far I have gotten some good tips from it. Mostly on breathing exercises and staying active. I would highly recommend this book to anyone with lung problems not just those of us with IPF.
  - Charlene Marshall
    
    Member
    March 28, 2022 at 9:26 pm
    
    @gordonbsand
    
    Hi Gordon,
    
    Thanks so much for purchasing the book and letting us know what you think of it. Reviews are always welcome, and we hope its helpful for you! Thanks for writing 🙂
    Char.
Charlene Marshall

Member
February 22, 2022 at 9:25 pm

Thanks for purchasing it @gordonbsand. I’d love to hear your thoughts after you’ve read it.

Take care,
Char.
- John Weitner
  
  Member
  March 20, 2022 at 5:11 pm
  
  I finished the book today and would recommend it to anyone suffering with IPF/ILD. The biggest takeaway for me is the critical importance of exercising – I do exercise but will increase it and work more on the stretching and muscle strengthening. Lose your muscle strength and you get out of breath much quicker.
  
  Grace – I was encouraged by your story – you were 64 when diagnosed – that was 16 years ago and you are still with us. I am 69 and would be happy to live another 16 years.
  
  Thanks to those who contributed to the book.
  
  John
  - Charlene Marshall
    
    Member
    March 28, 2022 at 9:28 pm
    
    Hi John,
    
    Thank you so much for writing and letting us know what you thought of the book – it means a lot to us to hear feedback, either way, on what fellow patients thought of it. It’s nice to hear some of the main takeaway’s from readers, and I’m glad the importance of exercising was something you noted, John. That said, it’s so much easier said than done with this darn disease!
    Yes @grace ‘s story is pretty remarkable – she is such a lovely woman.
    Take good care,
    Char.
bootgirl

Member
March 29, 2022 at 2:24 pm

Ultimate Pulmonary Wellness was made available to read online thanks to a generous gift by the Nora and Roger Gimbel Foundation. https://pulmonarywellness.org/book/