I Hope My Book Will Help You on Your PF Journey

I Hope My Book Will Help You on Your PF Journey

Just breathe, passionate help for the PF journey

I’m excited to share that my book, “Pulmonary Fibrosis Journey: A Counselor and Fellow Patient Walks with You,” was released a few days ago. It was a labor of love and I’m so glad I wrote it.

Why I wrote it

I was a mess when I was diagnosed with pulmonary fibrosis (PF) four and a half years ago. I didn’t get much information from my doctor and started searching on the internet. If you’ve been through this process, you know what I found. I was met with horrible news about prognosis, little information about treatment, and no help in emotionally handling the news. I was devastated and in shock. I began my quest to figure out all I needed to know on my own. It was a scary and lonely road.

The Pulmonary Fibrosis News forums are a place to connect with other patients, share tips and talk about the latest research. Check them out today!

Over the years, I’ve learned a lot about living with pulmonary fibrosis. I wrote my book in hopes of making this journey a little easier for patients and their loved ones. I also hope it will sensitize those in the medical community to what it’s like to live with PF and how they can help us more effectively. Doctors are our lifeline, and we’d be lost without them. What they may not know is what it’s like to be the patient, feeling alone, confused, devastated, and in the dark as we face a life-limiting illness. This is the book I wished I’d had these last few years. Below I share why I wrote it.

I almost didn’t write it

It was a huge project to consider. I’ve written two other books, so I knew what it entailed. I vacillated for six months, then only said yes because of a change in circumstances and a comment by my husband.

Six months ago, I was told by my lung transplant team that they would most likely add me to the transplant list in nine months. Although my lungs were serious enough to be listed then, I had to wait an additional nine months to get to my five-year cancer-free date before being accepted on the list. My husband asked me if that was hard to hear, and I said no, because I was in no hurry to go down that road. I also wanted to ponder how to use the waiting time to the fullest.

I’d been considering writing a book like this for a while but didn’t want to start it with all the uncertainty of being on “the list.” When this time opened up, I prayed about it and asked my husband what he thought. He paused and said, “How many PF patients do you know who are a counselor, author, write an international column about PF, and write about self-compassion?” I was silent for a moment, and then said, “Oh.” Having this window of time open up, God’s nudging, my hubby’s comment, and lots of encouragement from other patients spurred me on.

The following video will give you an idea of what’s in the book.

You don’t have to walk this path alone

I know the news of your diagnosis turned your world upside down. Let’s walk this path together. I will be your guide, resource, and friend, and I’ll help you become a good friend to yourself along the way. I will be real with you and talk about how to live the life you have left to the fullest, plus cover hard topics we all find difficult to discuss. You’ll find answers to your questions, which I hope will be deeply meaningful because they come from someone in the trenches with you, someone who truly understands what you’re going through. My hope is that your fears will be reduced and you will have a greater peace of mind knowing you’re not alone.

This is such a hard road that we’ve never been through before. The loved ones in our lives have never walked this road before, either, so I hope my book will be an encouragement to them as well. You don’t have to do this alone.

I wrote about what a challenge it was to write this book in a previous column. I also asked for help in letting PF patients, their loved ones, and medical professionals across the globe know about this book. I’d love for you to join my book launch team. To find out how, check my prior column for all the details.

I’d love to hear from you!

Where have you found information about PF? What kind of information and encouragement do you need the most? Could you help me spread the news about “Pulmonary Fibrosis Journey”?

Please leave a comment below and share with those who could benefit via email or on social media.

***

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.

18 comments

  1. anne says:

    You asked the question, “Where have you found information about PF?” and I have to say there is almost nothing about radiation induced pulmonary fibrosis. Just when I think I’ve dug deep enough, I’m sent back to idiopathic fibrosis. There is not one trial for my type of PF. Since you had cancer and then got PF, I think you might have my type. If so, please give me places to go to find out what I’m up against. My oncologist weeps and tells me to talk with my pulmonologist and she tells me not to worry although I dont have enough O2 to walk the distance of my house using a 4 O2 without my O2 going down into the low 80s. PLEASE HELP

    • Hi Anne, You are so right. It was difficult to find information. It should come from your pulmonologist. I would encourage you strongly to ask your pulmonologist for a referral to the closest center that specializes in PF. The Pulmonary Fibrosis Foundation has a list of the “Care Centers” they recommend. You can find it here: https://www.pulmonaryfibrosis.org/life-with-pf/find-medical-care They also have a help line number on that page you can call. In my case, I was put on a medication called Cellcept which helped reduce the inflammation in my lungs. Don’t hesitate to do what you need to in order to visit a center that specializes in PF. You definitely need more help and oxygen than you are getting. I hope this helps a bit.

  2. Rachel Hollins says:

    My lungs were burned during radiation; therefore I firmly believe that is the cause. Radiation was in 2002 and I was diagnosed with IPF in 2012 so….. But even identifying a cause does not change things and that is always how I look at thins. For me it is what it is and progress was very slow. Since Esbriet was approved by FDA right after I was diagnosed the disease has slowed. My problem is the chronic cough and the doctors think I should not have it, but nothing seems to stop it. That is my story.

    • Hi Rachel,
      Thanks for sharing your story with us. We all have such a different path and experiences. Mine progressed quickly. They attribute it to both the chemo and the radiation. I’m glad the disease has slowed, but so sorry you are dealing with such a difficult cough. Appreciate you sharing with us. Many blessings…

      • Sandra Lael says:

        Hi Kim, I came across your column looking for oxygen options. I do not have PF but I do have very severe stage 4 COPD. This is the first place I have read about the radiation and chemo effect. I had chemo in 2009. My new pulmonary doctor ordered a lung CT and was pretty surprised one lung had deteriorated very badly; for what he said was “no apparent reason.” I know it doesn’t change anything if that could have had an effect on the lung. It does give me a little relief to think I, myself, didn’t cause the damage. I hope you don’t mind me browsing around through your column. Not the same disease but perhaps some common problems. God bless you for the help and compassion you give to other sufferers; you may be all they have for information.

        • Hi Sandra,
          So happy my columns have been helpful! Love having you browse around 🙂 I’m glad it helped to hear you didn’t somehow cause the damage. That does feel good! I think there are a lot of common problems and adjustments between COPD and PF. Thanks so much for all your encouragement. I’m soaking it in!

  3. Carmela says:

    hi everyone, I have learned the most about interstitial pulmonary fibrosis from all of you. I’m delighted you did write the book and I’ve ordered it and can’t wait to read it. I have severe rheumatoid arthritis and I’m told that my IPF is due to years of taking methotrexate which is a chemotherapeutic drug; it was a shock to me to learn how much RA impacts the organs, not just bones and joints. But the more I read and research, the more puzzling and complex IPA becomes, it’s so different for everyone and forces such far reaching, permanent life changes on all of us. I am on oxygen 24/7 since March 2016 and I still have difficulty accepting the limitations.
    I know I’m not alone on this journey and truly appreciate the information we exchange and the support we give each other. Happy Holiday and my sincere thanks to each of you.

    • Hi Carmela, thanks so much for your encouragement. We all learn so much from one another! I hope my book will be a big help to you too. Wow, you have so much to deal with, wrestling with both RA and IPF. That is a lot to handle. It is a hard process to accept the limitation we face, and we all understand. So glad to hear from you 🙂

  4. Kate melmore says:

    I am just being investigated for this

    I have cracked glass opacity in my left lower lobe
    Nothing on bronchial camera
    2nd ct 3 months later xh
    Showed Not growing but getting better
    Now awaiting results from high resolution ct
    Checking there is scarring or not
    But would they have ordered this high resolution test if they weren’t expecting to find a problem

    • Hi Kate, So sorry you are going through this process. It sounds like your doctors are keeping on top of your care and are trying to make sure they get a correct diagnosis. They are probably trying to rule out pulmonary fibrosis, and the best way is with a high resolution CT. I know it is a scary time. I’m glad you found my column and this site. We’re happy to help. Take good care

  5. susan says:

    Just want to say thank you for writing the book..
    I am going to order it for a friend who recently got diagnosed.
    Thank you for caring about and sharing your journey..I am sure it is going to be extremely helpfuland encouraging.

    • Hi Susan,
      Thanks so much for your encouraging comment. How lovely of you to buy it for a friend. What a wonderful friend you are. I do hope it is a big help to her, and may help you understand more fully what she is going through. Many blessings, Kim

  6. Ted Fecteau says:

    Kim, I have ordered your book from Amazon and look forward to reading it and expect at least to have the comfort that I am not alone. I no longer live in the USA and so do not have ready access to COEs or PF specialists and transplants. In some ways I benefit by not being able to focus as much on my disease, fibrotic NSIP, as many other people seem to on theirs. I have little hope for improvement of care and thus I try to focus, not always successfully, on living now and appreciating the beauty around me as long as I can. Many on inspire.com and PF News have brought me emotional comfort and solace but I hear so many others still frightened by and struggling against their disease. I hope your book can bring another measure of comfort and solace to me and to the many of us that need it.

    • Hi Ted,
      Thanks so much for your comment. I hope my book is a blessing to you 🙂 I love your focus on living life to the fullest and enjoying every moment. Very inspiring! Wonderful to hear from you.

  7. Nicole says:

    Hello Kim,
    My father was recently diagnosed with PF at 63 and I just stumbled across your book. He will be getting a copy ASAP though Amazon, but my question is regarding where to look for information about PF. I’m almost a registered dietitian and currently in graduate school, and I know the doctors are the people to speak with regarding prognosis. However, he keeps looking online for advice and he’s continually met with negativity. Do you have any advice to give on this matter?

    Thank you for your time. Looking forward to reading your book!

    • Hi Nicole,
      How wonderful of you to be helping your father deal with this disease. I know this is extremely hard on you too. I hope my book is a blessing to both of you. The best place to find information online is The Pulmonary Fibrosis Foundation. pulmonaryfibrosisfoundation.com My book also has a ton of online resources in the back. Hope this helps.

Leave a Comment

Your email address will not be published. Required fields are marked *