Pulmonary Fibrosis Patients Live in a Constant State of Fear

Pulmonary Fibrosis Patients Live in a Constant State of Fear

Sadly, many patients living with a life-threatening illness are likely familiar with a magnitude of feelings, fears, and emotions. There is no instruction manual on how to navigate life-threatening with a lung disease like idiopathic pulmonary fibrosis (IPF).

I’ll never forget when doctors told me that due to my age, they were uncertain about how this disease would progress. This was very unsettling, and I often thought, “If the doctors don’t know how to control my disease, how am I supposed to learn to live with it?” In hindsight, I’ve learned that everyone does their best to manage IPF, but sometimes, not even that is enough, which is scary.

Last August, I wrote a column that outlined many of my biggest fears as a patient living with IPF. While the fears I wrote about then are still relevant to my life nearly a year later, I’ve unfortunately added to the list as a result of experiencing more pain, physical decline, and the loss of people around me. I now realize that I am in a constant state of fear due to this disease, which is one of the agonizing mental aspects of having it.

In most of the columns I’ve written about coping, I’ve talked about the emotional and physical aspects of this disease. However, this is the first time I’ve really reflected on how IPF affects us mentally. There will always be curveballs to work around, and while I try not to let it consume me, the fear of “what if” or “what next” is never far from my mind.

After I was diagnosed with IPF in April 2016, I was told about the risks of having a lung disease and the steps I’d have to take to mitigate those risk as much as possible. I continue to have these discussions with my doctors, and the steps include doing my best to avoid people who are sick and getting enough rest to keep my immune system as strong as possible. Despite doing these things faithfully, something could still happen at any time to jeopardize my health. It is the unpredictability of this disease that scares me the most.

A number of events have happened in the last three years to cause this constant state of fear. In addition to those I wrote about previously, new fears include:

  • Becoming critically ill again: In May 2017, I suddenly fell ill, and it was one of the scariest times of my life. Due to a respiratory virus, both my lungs collapsed, and the fear of this happening again sometimes cripples me. I avoid large crowds and people who I know are sick. This constant state of fear is mentally exhausting.
  • Being found unresponsive: While this may sound dramatic, unfortunately, I experienced this with a friend who received a second lung transplant. He had been discharged from the hospital and was recovering at home, but his mom found him unresponsive on the floor of his room. This is one of my greatest fears, not only due to the impact on me but also on my family.
  • The impact on my career and my finances: Long before I got sick, I was committed to lifelong learning, and as a result, I pursued higher education, receiving undergraduate and master’s degrees. I went into debt to obtain these degrees, but before IPF invaded my life, I believed I’d have my entire life to work and pay off the debt. My earning potential was higher than what I borrowed. While I am still working, it is a genuine fear that my debt will become unmanageable if I don’t continue to earn an income. It is becoming difficult to do this with IPF. This state of fear and worrying is mentally draining.
  • Losing friends to IPF: This is a sad reality of living with any chronic illness, and it’s something I’ve already experienced several times. It never gets easier. I am in a constant state of fear about the intense heartache, grief, and pain that comes with the loss of another friend from this cruel disease. I know it is inevitable, but the fear of it happening again is exhausting.

What are some of your deepest fears as a patient living with IPF/PF?

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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.

18 comments

    • Charlene Marshall says:

      Hi Donna,

      Thanks for reading my columns and reaching out via the comments. Sorry to hear of your PF diagnosis 1 year ago; that is never easy. Kudos to you for reading information about it online, that helps a bit with the absorption of information as opposed to denial. hang in there and feel free to write anytime, we truly understand what this is like which can be a comfort to some.

      Warm regards,
      Charlene.

  1. Barbara Patterson says:

    Diagnosed with IPF in 2017. Minimal treatment eg pulmonary rehab. Just turned down for medication, discrepancy with original CT scan. Felt ill for months and breathing,cough,energy levels worsening. Fed up!!

    • Charlene Marshall says:

      Hi Barbara,

      Thanks for reading my columns and getting in touch via the comments, although I am so sorry you’re also dealing with this cruel disease! Did you find pulmonary rehab helped? I liked that program, taught me a lot to help myself but I do wish I had more improvement physically, especially long-term. Can you get another CT scan to confirm your diagnosis, thus making you eligible for the anti-fibrotic medications to try? Something to consider, although I know the side effects are unpleasant. The exhaustion and coughing is exhausting, I completley agree! Have you been able to connect with other patients living with IPF? I have to admit, that truly has helped me. You’re welcome to join the PF forums anytime: https://pulmonaryfibrosisnews.com/forums/ it is a wonderful and supportive online community. Hang in there!
      Charlene.

  2. Mike Robert Olsen says:

    I had IPF 5 years,just received a double lung transplant on Jan 7.As a Pastor with IPF and a strong patient advocate I understand what your saying but I ask folks to look outward and use their stories to help educate others.Its very cathartic.And if they need extra professional help to seek it.Not an easy road for sure.

    • Charlene Marshall says:

      Hi Mike,

      Thanks so much for writing, it is wonderful to hear from you! Not to sound creepy, but I followed your transplant story from the sidelines and sent you lots of prayers, especially in your early post-transplant days. You’re amazing, and I’m so glad you’re doing as well as you are, despite some setbacks occasionally. Educating others and raising the profile of IPF is so important, I agree. Kudos to you – thanks for inspiring me.
      Charlene.

    • Charlene Marshall says:

      Hi Rita,

      Thanks so much for reading my columns and getting in touch via the comments, I appreciate hearing your thoughts! I’m not sure if this is the case in Canada, but I’ll definitely look into it. I suspect I’d have too much in student loans (from an Undergraduate and Masters Degree) for them to just forgive it, but that sure would alleviate a lot of stress. Thanks for writing!
      Charlene.

  3. Shirley Leeper says:

    I am a 91 year old woman who was diagnosed if pf in January 2019. I had a ct scan in 2016 and it showed some scarring, but pf wasn’t discussed. I started coughing almost constantly in January 2019 and finally got to see a pulmonary doctor in March. Another ct scan moderate scarring so I assume my disease is slowly progressing. Right now I am nebulizing 4 times a day and I think it helps more than the drugs I was put on. My cough is so much better, but the tiredness and shortness of breath are no better. In fact I thing the shortness of breath is getting worse. Sure saves money cause I can’t get out and shop! I play bridge a couple of days a week and go to church via my computer and that about sums up my activities. I do walk some, but nothing like I used to so reading and watching tv are the biggest of my activities. I know this disease will progress and my philosophy is well I might get hit with a Mack truck before I die of this, so I try to keep a positive attitude and live each day as it comes.

    • Charlene Marshall says:

      Hi Shirley,

      Thanks so much for writing and for reading my columns. Sorry to hear of your recent PF diagnosis, although I am glad to hear it is progressing slowly and hope it remains that way for so long. What scares me most is the unpredictability of this disease, so I am glad you’re taking the steps to help your lungs through medications and the use of a nebulizer. Hang in there and you are indeed right, keeping a positive attitude and living the best we can each day is important, albeit not always easy. Feel free to write anytime, it has brought me comfort knowing others are out there who truly understand the struggles of living with this disease. Hang in there!
      Charlene.

  4. Connie Lum says:

    I was diagnosed almost a year ago. My 2 brothers also has it. One brother received a double lung transplant. He was only on the list for a week but he was on ECMO, nitric oxzide , trached, and on a ventilator. My other brother had a chronic cough, we thought was allergies, I was and still am asymptomatic. I am 67 and my brothers are 59 and 62. I walk 5 miles a day and have always been an advocate for exercise. Recently I had the stomach flu and vomited, I immediately wondered if I was aspirating some of it and would it damage my lungs. I never thought that way before. I am taking Esbriet. Had to stop it during the bout with the flu as I couldn’t eat anything. I am trying to live every day one day at a time. Enjoy everything around me but I can say this now because I don’t have symptoms. I know that will change and when it does I’ll deal with it then. Fear is draining , try to enjoy each and every day.

    • Charlene Marshall says:

      Hi Connie,

      Thank you so much for reading my columns and getting in touch via the comments. I’m so sorry to hear both you and your brothers have had to deal with PF. Did they find a genetic link for the three of you to have it? I’ve heard there is no such thing as familial IPF, but then others have said there is so I am always curious. How is your brother doing that received the lung transplant? Kudos to you for continuing to walk and stay active, that is not easy with this disease. I pray that you continue to be asymptomatic for many more years and thanks for your reminder about the importance of living each and every day. We can’t know what will happen and being fearful of what to come can be equally as exhausting. Hang in there! Charlene.

  5. Steve Dragoo says:

    Hi Charlene,

    Not to get off your important topic, I would like to share a few things I have learned. Many (many) years ago I read Frank Herbert’s sci-fi series “Dune” and of course watched the original movie. A strong young lad, Prince Paul Atreides said, “I must not fear. Fear is the mind killer. Fear is the little death that brings total obliteration. I will face my fear. I will permit it to pass over and through me. And when it has gone past I will turn the inner eye to see its’ path. Where the fear has gone there will be nothing. Only I will remain.”

    17 years ago I had a life altering experience and today I would saw that phrase a little differently, “faith is the mind restorer and when it has finished its’ work only Christ will remain.” – my personal experience and a work in progress to be sure.

    But I still know fear and I don’t need it or want it. My first flight leg over to the Philippines was 15 hours to Hong Kong. Across my isle seat was a sick woman with a harsh deep cough and it was clear it was a serious deep chest cold. I worried a little but started calamansi (strong lemon) and crushed garlic (referred to as a Russian Penicillin) as soon as I arrived here and I did not get sick even after 48 hours with very little rest, no O2, and two very hard days prior to my flights – not to mention the 12 hour time difference adjustment…

    But working under ground in tunnels and mines for 12.5 years, using explosives everyday and working with some of the toughest guys on the planet and serving in he US Navy during the Vietnam war – I look back and wonder what do I have to be afraid of??? Hopefully this disease will create a sense of urgency because now I know the clock is ticking…

    Stay well… Steve

    • Charlene Marshall says:

      Steve,

      Love hearing your perspective and thoughts as always, thank you for taking the time to share! Your message of focusing not on fear but on each day and our faith is important, thanks for that reminder. I’m so glad you didn’t end up getting sick (side note!) but that would have made me fearful or anxious the entire flight. We can’t predict what will happen, so sometimes we just need to let it go and focus on the here and now. Appreciate you and your thoughts.
      Charlene.

  6. John Barnett says:

    I was diagnosed a little over 7 years ago. Spent almost three years soon after diagnosis in a clinical trial that went well. Was dropped from the trial by the researcher in an effort for them to save money. Luckily enough, I got a copay sponsorship to help pay for a prescription of Ofev. So I attribute much of my longevity to these two drugs. However, no prescription will ever reverse or treat the mental and spiritual affliction of this disease that one suffers on a daily basis.

    After seeing so many online friends die, some slowly and some very fast, I realize that every day that I wake up may well be my last day to live or the first day towards a sudden decline leading to the end. This becomes wearisome and is hard to deal with.

    • Charlene Marshall says:

      Hi John,

      Thanks so much for reading my columns and reaching out via the comments. I completely agree with you about how wearisome it is to witness those we care about, even friends online, die from this same disease. That is the biggest piece for me: it isn’t people dying of some “random” disease, it is the same one I am trying to outlive. That scares the crap out of me sometimes, but then lovely people on the forums always remind me to live in the here and now because ultimately, that is all any of us get, whether we’re living with PF or we’re healthy. Each day is unpredictable I suppose. May your physical health continue to be strong for many more years, and please be gentle on your spiritual and mental health, these are important too. Hang in there and feel free to connect anytime!
      Charlene.

  7. Hi Charlene,

    Me again. In terms of your student loan debt I would definitely speak with them. I am sure they could do something for you. I am Canadian if you recall.

    The other comment I would like to make is for everyone here. There is solid research that demonstrates people with PF are referred too late to palliative care; meaning we suffer with uncontrolled shortness of breath, coughing, pain , nausea etc, because we believe we have to put up with it because it’s part of the disease. Does this sound .like you? In fact palliative care treats exactly these symptoms. They are the experts and you should ask for a referral from your doctor. Research has also demonstrated that not only does Pc improve your quality of life but in some cases extends life. Please give yourself the best possible life.

    • Charlene Marshall says:

      Hi Lorena,

      Thanks for getting back in touch – I actually had forgotten you were in Canada! You’re right, it is worth a phone conversation to see if there is anything they can do to help. I certainly would have done my schooling (and subsequent debt) differently had I known IPF was around the corner for me.

      I know we’ve talked about the importance of involving palliative care early on, to focus on quality of life, not necessarily end of life, but I appreciate your reminder to others too. Such a hard topic, but important and I know Megan touched on this on her post on the forums too. Thanks again for reminder those and encouraging many of us to take this very hard, but very important step too.

      kind regards,
      Charlene.

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