Patients with Terminal Illnesses Need Practical Help

Patients with Terminal Illnesses Need Practical Help

Just breathe, passionate help for the PF journey

Hello PF friends! I would so appreciate your input regarding a heartfelt project I’m considering. For about a year I’ve been pondering finishing a book to help patients like me deal with being diagnosed with a terminal illness.

I started this book a year ago but set it aside as I worked to complete some projects for my family. I’m considering picking it back up again and would love your input. I started to write this book after experiencing how awful it was to figure out how to deal with this disease pretty much by myself.

Conflicting information

When I was diagnosed four years ago, there was so much mixed information on the internet that was either incorrect or shared in terrifying ways. You know what I mean. I also noticed there was very little to help patients deal with the emotional turmoil of being diagnosed suddenly with a terminal illness. The effort of trying to deal with the emotions while figuring out what treatments to pursue and how to use supplemental oxygen was overwhelming.

I’ve learned a lot from my own experiences as well as from fellow patients like you. Doctors know a lot, and we’d be lost without them. What they don’t understand is what it’s like to be the patient, and to feel alone, confused, devastated, and in the dark as we face a terminal illness.

Join our PF News forum to learn more about how to help patients with terminal illnesses.

Writing a book is a lot of work, and I’d like to see if there is a need for this book. I’m hoping it will be helpful to have practical information from a patient’s perspective all in one place. I put my foot in the water a few days ago and asked three of the PF Facebook groups I belong to if they felt there is a need for a book like this. I got a lot of very positive responses, and I would value your input too.

Several areas of need

The responses I received seemed to coalesce around several areas of need:

  • Working through the many emotions and grief that come with this diagnosis.
  • What we wish we knew when first diagnosed — not just treatment information, but all the ways to be proactive to stay as healthy as possible for as long as possible.
  • How to live the best life possible now.
  • Help for caregivers — information they need to help us, how to take care of themselves and handle their varied emotions as well as get the support they need.
  • Understanding and obtaining palliative care, including addressing end-of-life issues.
  • Everything a patient needs to know about oxygen.
  • Treatment options.

A book just for PF patients?

As I read through the responses, I noticed that the needs expressed were specifically about dealing with pulmonary fibrosis, as opposed to dealing with a terminal illness. This is causing me to rethink narrowing the book for pulmonary fibrosis specifically. I truly would appreciate your input. I don’t want to put effort into a book if it doesn’t meet a deep need.

I want to use the time and energy I have wisely. I’ve written two other books about self-compassion and would love to help fellow warriors on this tough road we are traveling.

I’d love to hear from you

Would a book like this be helpful to you? If so, what would you want to be included in it? Are there other books about PF written by patients out there? Do you think a book dedicated to PF patients rather than to those with a terminal illness is a good idea?

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

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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.

29 comments

  1. John Harris says:

    How does the end come and what meds do they have to help us throughthe bad part at the end . We all know what that is. Imam close to that now . Any help would be greatly appreciated

  2. Ivonne Figueroa says:

    I was diagnosed with this condition on may 8,2018 it surprise me,we knew this diagnosis by and surgical intervention biopsy of the right lung,after a lots of studies.I haven’t knew about this condition before and after this,you can imagine that this, my life and my families change .

    • Hello Ivonne, yes I know what you mean. This diagnosis changes everything and is so difficult. Thanks so much for sharing your story with us, and thanks for letting me know you are from Puerto Rico 🙂

  3. Lorena McManus says:

    Hi Kim,
    Me again😉 It’s a tough choice but so glad you’re doing something. There are many books and articles, and some websites available to assist people in dealing with a life threatening illness, and loss. As you correctly point out there is nothing specific to PF. In my years as a nurse and an administrator in pc I would venture to say the psychosocial issues and physical symptoms we struggle with are similar to other life limiting illnesses. The palliative care of those of us with PF is much the same as that of people with other terminal illnesses. Nothing that people on the websites has convinced me otherwise at this point, including my own experience.

    However, all of us that belong to a specific disease group feel we are different, and perhaps there are some differences. I am not sure. So my long winded advice to you would be to make it for PF but stress the similarities and highlight the differences where evident.

    Good for you for doing this Kim!!!!!!

    • Hi Lorena,
      Thanks so much for your comment. I agree with you that there are many similarities with others diagnosed with a terminal illness. I love your “long winded advice!” Good idea to focus on PF patients while stressing the similarities and highlighting the differences. Appreciate your encouragement. I will try to get it done, God Willing!

  4. Eileen says:

    Hello Kim,

    I think your books will be very informative and thank you in advance.

    I have two thoughts: many people use PF and IPF interchangeably. Some of us have fibroic lungs due to a different ILD, in my case, NSIP,nonspecific interstitial pneumonitis. Meds and possible outcomes are different although there are commonalities. So maybe narrow or enlarge the focus of your books.

    Secondly, I would hope that Drs schedule a second appt closely after diagnosis. The shock,questions, possible issues do not set on until we have a chance to mull over diagnosis, etc. It would help if patients were told of Inspire and not “do not use internet…”

    We are on a journey into unknown territory so I am praying for all of us.

  5. Burma says:

    Hi Kim! Happy 4th of July! I was diagnosed with lung disease 02/06/18, however, I wasn’t told I had Pulmonary Fibrosis, confirmed, until May 28th of this year. Went from “emphysema” a possibly controlled lung disease to Pulmonary Fibrosis, a terminal disease, within 3 months. I was just learning all about COPD/Emphysema and was just getting a handle on it when, WHAM! that went out the window.
    Since my diagnosis is somewhat “new” to me, I haven’t quite come to terms as a “terminally ill patient”. I think because I am 72 years old and I’ve had two bouts of cancer and feel grateful I have lived this long with a rather healthy life.
    I don’t think I am in denial, just very hopeful that I will last a little longer than 3-5 years.
    The information I’ve found has been on line and I am thankful for that. Even our doctors don’t have all the information unless you go to a Center of Excellence. But not everyone has a computer, has access to one, or knows how to use the WEB. A book about PF would be great for all of us. Good Luck and God Bless!

    • Hi Burma,
      What a wild ride you’ve been on diagnosis-wise. You have been through so much and are courageous! I love your attitude! Thanks for your encouragement about the book – I’m going for it!

  6. Janet Durgin says:

    I would love to see more issues discussed that are pertinent to PF patients but I agree with addressing similarities that all terminally ill patients face. Thank you for taking this step. I was diagnosed on Oct. 22,2017. There are so many questions thatmy family and friends have. Majority including myself had never heard of PF. Finally getting a diagnosis after several years was in some way a relief. Good luck with your project!

    • Dear Janet,
      Thanks so much for your response. I so appreciate your input. You are still in the newly diagnosed phase. I hope my book will be a blessings to patients and their families. Many blessings to you…

  7. Maria Cade says:

    Dear Kim
    Firstly, congratulations for your desire and willingness to continue helping others. As an Occupational Therapist , now “unwillingly
    retired”, with a ling career focused on practical assistance to the aged or people living with disabilities, I have found(at least here in Australia) that there is still much taboo about death, dying and grieving, for both the patient and those who love and care for them. Perhaps a chapter about that would be useful. I have also found that most people ignore or are reticent to think About, research and action end of life plans such as wills, organs donations, end of life (here known as advance health form), funeral arrangements, etc
    My family, friends and myself have found that going through all of these unpleasant but necessary issues has not only been useful and stress reducing but it has brought us closer together and has had a ripple effect as it has encouraged family and friends to look at their own circumstances in a proactive manner, rather than waiting for a life threatening diagnosis.I believe this information as part of your book would be priceless.

    • Dear Maria, Thanks for sharing. I had to “unwillingly retire” too. So hard. You have given so much to those at there most difficult times. I value your opinion and experience. I will definitely include chapters on grief, palliative care, self-care for patients and caregivers, and help with end of life issues. I’m so glad that handling these difficult issues has brought you and your loved ones closer together. I appreciate you encouragement about the book. I’m enjoying working on it!

  8. Mary Dempsey says:

    I think the link between Terminal illness and IPF should be emphasised. The challenges are that most terminal illnesses are around cancer and that is most peoples perception of terminal illness.My beloved sister died in February of IPF but throughout her illness the fact that she did not have cancer seemed to make her less terminal.Also towards the end she lost weight very rapidly and her breathing was much worse. I think at this point mostly she was percieved as terminal. But for her and the people closest to her she lived the last five years KNOWING not thinking that she was going to die despite the many good days she had.I think that is the challenge of IPF and for the Education of cares proffessionals everyone to recognise the gargantuan challenge that IPF presents in living until you die and having that acknowledged and respected by everyone.So I am very aware of the gift you are contemplating giving. Thank You either way.

    • Scott Felland says:

      I agree, Mary, that most people are terrified and extremely sympathetic when hearing that someone they know has CANCER, whereas, with an IPF diagnosis, the response is nearly dismissed.

    • Dear Mary, Thanks so much for your input. I so appreciate you sharing about your sister’s passing. I’m so sorry for your loss. So hard to lose a sister. You are so right that an IPF diagnosis seems less terminal than cancer. I’m hoping my book with help patients and their families learn and care for themselves and live to the fullest until the end. I so appreciate your input.

  9. Ron Cade says:

    Here’s wishing you success with your book. We all know there is and end to this life at some point. I was told to me more gently than some hear it when I was told about my PF diagnosis two years ago. I have been dealing with shortness of breath for, I know, five and a half years. Last week it seems like a switch was flipped. Getting around is suddenly in short spurts then rest then try some more. I’m on oxygen 24-7 at eight liters when active, sitting a little less. I have looked for end of life symptoms online. Pretty much generalized. I guess there will come a time when my oxygen level cannot recover. I try to not let it crash for too long at a time it drops into seventies quickly if I’m not careful. Once I know it was at sixty four. I can’t decide if my motor skill is hampered by low oxygen or lack of muscle tone.

    If you will address these issues of muscle tone/exercise, end of life symptoms, I’m sure it will be appreciated.

    The spiritual aspect for me is a concern. I’m a Bible student. I believe I’m a saved soul. This is comforting and probably why I’ve handled this death sentence so calmly. I wish all to know the peace I have. Yet, I’ve recently learned there is a side of depression I didn’t know. That is lack of being active. Its a sneaky thing. Maybe I’m in denial but I’ve never thought I’m depressed, not even having the blues. My doctor wants to talk about depression. She called after getting a report from the Pulmonary Nurse at the Research Hospital. Talk about a surprise. I’ve just tried to deal with my new inabilities. You might want to consider Spiritual and depression. Maybe all this will help you? Cheers!

  10. Scott Felland says:

    I am sure that such a book will be of great value to anyone with PF. I would like it to be focused primarily on PF, even though those with other lung diseases will also find that much of it will also pertain to them and be helpful.
    I found the link that you provided John Harris concerning the end stages to be informative. Thank you.

    A book that I am currently reading, Ultimate Pulmonary Wellness by Dr. Noah Greenspan, that was recommended on a PFF post, is very informative and covers many crucial topics. While his book is meant to cover many pulmonary illnesses, the focus of yours will be an invaluable resource. The personal slant will offer an insight that others can’t fully understand. Thank you for your dedication.

    • Hi Scott, thanks so much for your input about directing the book more specifically to PF patients. After getting lots of input I agree, and will do so. I love Dr. Noah’s book! It has helped me so much, and I will be referencing it a lot in my book. I appreciate your encouragement. It is a big undertaking, and encouragement like yours spurs me on 🙂

  11. Carmela says:

    Definitely, Kim writing a book about living w/PF is a great idea and undertaking. I would approach it as a narrative using yourself, your experiences, your knowledge and your empathy as a basis. For many of us the PF diagnosis is a result of another condition. Thru my own experiences, I have found nuances and subtleties inherent in IPF that don’t exist in other terminal diseases esp if oxygen 24/7 is part of life. As previously stated, draw on simlarities w/other terminal diseases but I would focus on PF and how to deal with the endless life changing adjustments.
    Wishing you success.

    • Thanks Carmela! Thanks for your encouragement and input. I really appreciate it. I do plan to interweave my own experience throughout the book, and I hope that will be helpful. I will also interweave being a good friend to ourselves on this difficult journey. I love your phrase, endless life changing adjustments. Isn’t that the truth! Thanks again for sharing.

  12. Elayne Lemanow says:

    Hi Kim, I have bronchiectsasis and I share many of the symptoms and oxygen dependent lifestyle that you and other PF patients refer to. I am on my own. I am currently independent and can perform my Activities of Daily Living.I understand that will change with time. I am interested in knowing how to plan for end stages, especially if one is alone and will have to be proactive in making those arrangements themselves. What typical changes happen, potential social isolation,typical caregiving needs, typical oxygen needs, housing needs, financial considerations/tips. I see some are asking for book to address PF specifically. However, I think wearing oxygen is what is unique for me and I share that with you and others with PF. I would still be interested in reading such a book that addreses these oxygen dependent issues. Thank you for considering this.

    • Hi Elayne,
      Thanks so much for sharing about yourself and what you’d like in a book for patients. Very helpful. I’m so sorry you are dealing with such a difficult disease on your own. I would be happy to address your concerns, and know it will help others as well. Blessings to you…

  13. Corinne Shawgo says:

    Still not sure what the exact difference is but I was diagnosed in 2014 with Interstitial Lung disease, and Connective tissue disease; rather than Pulmonary Fibrosis. But the outcome is the same for as a person with PF. Your gathering information from people with lung disease is wonderful and I wish you success with your book.!
    For me the psychological problems have been the most difficult to deal with, such as depression, lack of groups in this area. Family members who still don’t really understand this disease. Most people think the medication I take is going to make me OK again. It also frustrates me that doctors treat the condition too much and not the person as a whole. A fifteen minute office visit and some tests every six months just doesn’t make me feel good about myself. If I sound to negative than I guess that this disease over rides the “positive” at times. It takes a great deal of strength to deal with this every day.

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