Prioritizing Survival While Living with Pulmonary Fibrosis

Prioritizing Survival While Living with Pulmonary Fibrosis

younger than 30

Living with idiopathic pulmonary fibrosis (IPF) can be exceptionally difficult regardless of age. While a number of commonalities exist among people with various types of lung diseases, including IPF, there are also a number of differences that are unique to the age of the patient living with the illness.

Recently, on the Pulmonary Fibrosis News forums, I started a discussion topic to highlight some of these differences and ask others about their experiences. For example, young adults living with IPF might worry about how to introduce the disease into a new relationship or how IPF might impact their ability to have a family. Patients who have been married for a number of years may be thinking about how to discuss their disease with adult children, or they may be forced to consider early retirement. Depending on the life stage you’re in, the impact of IPF is different for each patient. That said, regardless of age, the disease can be equally devastating for all patients and their loved ones.

As a young adult living with IPF, one of the most painful things is watching my friends achieve and celebrate milestones that are normal for people in their early thirties. I am excited for my friends who are getting engaged, who are planning their weddings, and even some who are preparing to expand their family. I have enjoyed witnessing these milestones alongside them and celebrating their achievements. However, my personal priorities are a little different these days.

Since IPF is a fatal illness without a lung transplant, it is hard to plan for a future. IPF is also a disease that literally steals your breath away as the fibrosis expands throughout your lungs, preventing adequate oxygenation. As a result, there is always an unspoken threat that something could happen quickly and cause a patient living with IPF to deteriorate, leaving their lung function poor while reducing their overall ability to complete the daily tasks of living. Due to this, my priority is just surviving each day with my disease and trying to focus on quality time with the people I love most. Some days it feels like I just can’t prioritize anything else.

Now that I have achieved the level of education I always dreamed of, found a nice home, and secured a career in a field I am passionate about, the next steps should be working toward the milestones that my friends are achieving. Anyone else my age might be focused on finding their soul mate, planning a wedding, or settling down to start a family. I am proud of my accomplishments, but I am nowhere near ready to start focusing on the things my friends are, and this is due to IPF.

While away this past weekend with my family, including several cousins my age, we began talking about family weddings. Our family weddings are a lot of fun and something we all look forward to. Many of my cousins are married already, and a few have yet to tie the knot. As we were talking about this, someone mentioned casually that no future family wedding is planned. They jokingly said the remaining cousins who were not yet married should prioritize it for the sake of another family wedding. I chose to share that my priority was to live long enough to achieve this milestone. The room went silent, but not for a bad reason.

It helped my cousins understand the seriousness of my disease, and to my surprise, they were understanding and supportive of what I had shared. It also created an opportunity to have a meaningful discussion about my disease, which followed shortly after, and I am grateful for this opportunity. It gave me time to reflect on my priorities over the next few years, regardless of whether my health declines or remains stable.

Overall, my top priority is to survive the constant threat of my lungs having an exacerbation or an acute event that is detrimental to my health. I plan to do that by taking the best possible care of my lungs and overall health. Aside from that, I’m not likely to prioritize many of the milestones that other young adults my age might. Secondary to prioritizing my survival with IPF, I also prioritize traveling, maintaining and establishing meaningful friendships, and capturing quality time with my friends, family, colleagues, and my wonderful dog. After all, there is no rulebook that states what you should prioritize in your life, regardless of age.

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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.

10 comments

    • Charlene Marshall says:

      Hi Timothy,

      Thanks for reading and contributing your comments on this column. I couldn’t agree more – it is hard to think of anything else when you’re living with IPF and in the constant threat of something going wrong with your health (this is how it feels for me anyways). I think I’ve even developed some PTSD as a result of the constant threat to my health, which makes it even harder to focus on tasks beyond surviving PF. As always, sending you best wishes for continued stable health!

      Kind regards,
      Charlene.

      • Patricia Glanville says:

        Just found this site and its good to know I am not alone. I was diagnosed about a year ago…am on Esberit…the only real symptoms I have are a little cough and sometimes feel tired..but then I am 72..I live in Spain…swim most days and walk my dog. I practice breathing exercises and am trying to live my life…lets face it..I could walk outside today and get run over by a bus! I think positive attitude can help us all. Plus new drugs are being tested…I wish you all love and joy…

        • Charlene Marshall says:

          Hi Patricia,

          Thank you so much for reading my column and contributing to the comments. It is always so great to hear from others, and please know that on this site (and on our forums: https://pulmonaryfibrosisnews.com/forums/) you are among friends who truly understand. It is so important not to feel alone on this journey, and on our forums, if you’re inclined in joining, there are some amazing patients who are always willing to talk and help if they can. We’d love to have you join us!

          It sounds like you’re able to keep relatively active by swimming and walking your dog, kudos to you. It must be beautiful to do those things in Spain as well, wow! Does the heat there bother you at all?

          I couldn’t agree more re: positive attitudes helping us all! I pray every day that the drugs being tested turn out to be a cure for IPF, and can’t wait to (hopefully) see a day where this disease no longer exists. Sending you many prayers and best wishes Patricia. Please feel free to connect any time.

          Kindest regards,
          Charlene.

    • Charlene Marshall says:

      Hi P.T.,
      Thanks for reading my columns and I am so glad to hear you found them informative and helpful! 🙂
      Best wishes to you.
      Kind regards,
      Charlene

  1. Helene F says:

    I was not aware that someone so young could have IPF – You seem to be doing a good job of adjusting to your situation. I wish you the best. You do have an incredible burden on your shoulders.
    Helen F

    • Charlene Marshall says:

      Hi Helene,

      Thanks for reading my columns and for getting in touch.
      Yes, unfortunately this disease (like many others) does not discriminate. While it is “rare” to be diagnosed with IPF so young, it is not impossible and I actually know about a dozen others who are under 40 and living with IPF as well. Some who have had successful transplants and some who have succumbed to their disease. Thanks for your kind words, and sending best wishes back to you as well.

      Kind regards,
      Charlene.

      • Allison says:

        Of those that with successful transplants how was their journey. My father might be able to get a transplant but we want to be prepared for this difficult journey.

        • Charlene Marshall says:

          Hi Allison,

          Thanks for reading my column and for getting in touch through the comments. I am always interested in hearing how others’ transplant journey’s go as well and as a result, created a forum specifically to discussions around this on our overall Pulmonary Fibrosis News forums page: https://pulmonaryfibrosisnews.com/forums/ . There are some folks on there who have shared their experience, and I also recently came across the Lung Transplant Foundation who is dedicated to helping others through their journey with transplantation. Might be worth checking out their website if your father decides to proceed with transplant? Keep in touch and feel free to connect any time!

          Kind regards, and prayers to your father,
          Charlene.

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