Life as a New IPF Patient

Life as a New IPF Patient

Welcome to my column!

As indicated by its title, “Younger than 30: Living with IPF,” I am a 28-year-old female recently diagnosed with idiopathic pulmonary fibrosis and trying to adjust to life with a fatal and debilitating disease as a young adult with much on the go.

One of the biggest, and most challenging things I am currently trying to cope with, and am eager to hear about from others, is how to manage the fact that IPF changes/impacts everything in your life! In fact, it’s changed so much that it’s taken me several weeks to determine what I want to write about first for my column. As I proceed through my day, I catching myself thinking, “that would make a good topic,” or “I need to remember to talk about that in my column.”

So, I thought my column today could be about some of the upcoming topics I hope to write about, and outline them here while elaborating a little bit on each one. Some will be relevant to most people living with IPF. Some are more likely to be relevant just for young adults experiencing IPF, but I am eager to hear from you all — anyone who would like to contribute or send me a message — as we’re all in this together.

Here are just a few of the topics that I am considering writing about:

  • When adults feel responsible for you, another adult

    This something I’ve been trying to navigate for a few months now, as my relying on others for help is significantly increasing as my lung function is decreasing. I think, despite my being an adult, there are a few people who feel that they are medically responsible for me when we are together, because they know of my condition, what I’ve been through and am going to go through. I try to ensure no one feels responsible for me, because like every other adult, the only person responsible for me is me. It is frustrating when this assumption or fear of being responsible changes or hinders our plans altogether.

  • How physical fatigue can impact all social relationships

    I am confident that anyone with IPF can relate to this topic! When the simple act of walking, breathing, and talking leaves you physically exhausted, it is easy to want to cancel plans, interfering with social activities and relationships. Unless someone knows how it feels to experience such fatigue, it’s hard to blame them when they don’t understand why you just can’t keep up.

  • The nuances of suddenly having to be aware of, and avoid, germs at all costs

    This is something very new to me! I work with kids and families, and love my job, and suddenly I’m having to re-schedule or cancel meetings because if kids around, I’m at risk of getting sick. Then there is the discomfort that comes with asking if someone is sick in the home, or moving away from someone coughing in public, constantly using a hand sanitizer, or wearing a mask in places with crowds.

  • The pendulum swing: From a great day to a horrible one in a matter of minutes!

    Lately it is not unusual for me to wake up in the morning and feel content and happy, after making a conscious reminder to myself that I should be grateful for another day. But then I get a phone call about an abnormal test result, or something happening to someone else I know with IPF, or I start to feel physically unwell. Lately, even someone saying the wrong thing throws me into a fit of emotions — thanks, steroids! I never used to swing from one extreme to the next in a matter of minutes, and the fact that I do now still angers and surprises me.

  • Feeling like you’re alone, amid 100+ people who want to help

    This is probably the most difficult one to manage and it is two-fold. There are so many people who respond to my concerns (when they ask for them … I try not to voice them aloud often) with “I know,” or “ya I understand,” or “I know how that feels” — and even though they mean well, the response I want to say is “no you do not!” This isn’t a sympathy cry at all, but until you know what it feels like to feel like you’re suffocating just getting up and down off a chair, or walking for a few minutes at a time, you truly can’t know. The other part of this is not wanting to burden people with my issues and feelings, even though they offer to help. Now more than ever, I recognize how busy this stage of life is for people, between kids, managing a house, holding down a job, extra-curricular activities and social demands; this stage of life is hard, and believe me when I say it: you feel like a burden when you want to reach out to someone just to dump all your stuff on them, and you already know what they’re already dealing with. It’s frustrating and it’s tiring to feel like you’re alone, when you’re not, but you kind of are.

  • The exhaustion that comes from being your own advocate

    Reading the literature, the news sites, the social media blogs, and talking to others living with this disease, just to stay on top of relevant medical information, is so very tiring. Then you receive push back from your doctor (luckily, this rarely happens for me because my doc is amazing …). But, on top of everything else, it’s hard to try and keep up with medical advancements in order to effectively advocate for your needs.

Those are a few things on my mind right now, but there are also lots more! I will update as I go, I suppose. Please let me know some of the challenges you’re trying to navigate, especially if you’re a young adult or newly diagnosed with IPF … perhaps we can draw strength in numbers, or work through these things together. Thanks for reading!

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.

10 comments

  1. Heidi says:

    Charlene, you are a hero for doing this. My mom has PF and everything you have described is what she is living with. Please continue. You are an inspiration to all of us. Prayers to you.

  2. Geoff Foley says:

    Charlene, many thanks for sharing some of your thoughts following your diagnosis with IPF. I can relate to many of your feelings having been diagnosed with IPF back in 2002. I know that when you have been perfectly healthy your whole life (in my case 55 years) and all of a sudden are told you have a fatal (and at the time of my diagnosis) completely untreatable disease it all seems very surreal.

    As you say, such a diagnosis, and more especially the symptoms of the disease, not only turn your own life upside down, but also the lives of your family members. You are necessarily no longer the independent person you once were, often depending on others to help with simple needs. Things that you always took for granted, now sometimes require planning and special effort.

    You talked about your endeavors to stay abreast of the latest medical advancements. So long as that helps you to remain optimistic about the future, I think that is a good thing, and remaining upbeat and optimistic is a very important part of dealing with the disease. Back at the time of my own diagnosis there appeared to be relatively little research activity. Today that has changed completely and gives you much reason to be optimistic.

    I obviously need to explain why I am still here among the living, now more than 14 years since I was told I likely had 18 months to two years to live. In April of 2005, with scant lung function remaining, and my entire body racked with rheumatoid arthritis, I was blessed with a double lung transplant at the Cleveland Clinic. This “Gift of Life” as thus far given me eleven years more to spend with my wife and three children, and blessed me with precious time to spend with my now three grandchildren. No, I am not the robust individual I once was, I am not doing many of the things I had planned to do in retirement, but I am doing many worthwhile things with my life, appreciating every new day, and hoping that I shall enjoy further years among my loved ones. Oh, and by the way, the immunosuppressant drugs I take to avoid organ rejection have entirely eliminated my rheumatoid arthritis!

    My comments are by way of encouraging you to remain optimistic about your future. Living in Ontario, I am sure you have great medical care available to you, and as a young person I am sure you would be an excellent candidate for a lung transplant if that is the path you choose to follow. In the meantime, the available drug treatments for IPF hold promise for retarding the progression of your fibrosis, and offer time for new options to become available. Stay strong, stay optimistic, and accept help when you need it. I wish you the very best as you continue on your journey.

  3. Michelle Kelly says:

    Dear Charlene
    Keep positive and accept any help offered. My mother (83) passed away on 1 October 2016 after living with IPF since about 1995. She was diagnosed in 2005. The great hope that you have is all the new research that is being funded and of course you are young enough for a lung transplant. My mother Lorraine from Auckland, New Zealand was very brave and positive to the end.

  4. jorge garreton says:

    I’m an IPF survivor thanks to a succesfull lung trasplant in 2013 after being diagnosed in 2010..before the transplant life can become an absolute misery..the 3erd day after it’s a new life..

  5. Chris S says:

    Charlene, Thanks for choosing to do this article/series!

    I was diagnosed with IPF last week, following 25 years with Rheumatoid Arthritis. I am 63 year old Male, retired in Aurora, Colorado.

    I have an early diagnosis, as about 1/2 of the day my oxygen level is above 90. I’m only on my second day of keeping this journal.

    I have a heath maintenance organization for health care, which doesn’t allow me to see a doctor outside their system. Open enrollment period for the affordable care act begins Nov. 1, so I’m hopeful to get a plan that allows me to get a Doctor at National Jewish Hospital, which is one of US best Pulminary Research and care facilities. I hope this works, so I can get better medical care.

    During the recent visit in which I was told the diagnosis, the Doctor spent half of our two hours telling me why I should now become a vegan, and only eat plant products. Have any of the rest of you been given this advise?? As my Doctor shared that he is avegan, I have the feeling he is pushing his own agena?

    • Tim Bossie says:

      We are sorry for your recent diagnosis, but glad that you got some encouragement from Charlene’s article. Good luck with the medical insurance and we hope that you are able to get into some better medical care quickly.

    • Geoff Foley says:

      Chris S, as a former IPF patient and now a double lung recipient of more than 11 years, I am pleased to hear that you are seeking the best possible medical care for your IPF. That is a crucial first step following your diagnosis. National Jewish Hospital sounds like a good plan. I am sure they will offer you a number of possible options, perhaps including lung transplant. I note that you have been a rheumatoid sufferer for many years. I had very severe rheumatoid arthritis in the months prior to transplant, but I should note that it disappeared completely following transplant and has never returned! When you finally get to National Jewish, you might inquire with your doctor there whether your rheumatoid might also be resolved following a transplant (assuming that is a path you would consider).

      My very best wishes to you as you begin this journey.

      • Tim Bossie says:

        Wow Geoff! That is really great to hear that you are doing well and that your arthritis is no longer a factor. We hope that you continue to do well for a long time to come.

  6. Pat says:

    All these comments are so very encouraging and sincerely appreciate the sharing of stories. My husband (68 yrs) has IPF, diagnosed a little over 5 years ago. We are fortunate to live only 1-1/2 hrs from Toronto General Hospital (TGH) which is world renown for lung transplants. We have just completed a week-long assessment for the team of Doctors to determine if he should or should not be placed on the list. As yet he is not on oxygen and enjoying most of what life has to offer with some limitations that would tax his breathing. As yet, he hasn’t even made the decision if he even wants to be placed on the list. He is very unsure of what is involved after a transplant (which as we understand is a two-year process at a minimum) only to gain a few years more of life entirely different than we now know it to be based on the 5 year survival rate. This post may be off base, however, I am currently caught up in all the posts I have read and felt the need to write something. Good luck to everyone with continued success.

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