What Are Your Priorities As a Patient with Pulmonary Fibrosis?

What Are Your Priorities As a Patient with Pulmonary Fibrosis?

PF-Charlene Marshall graphic

It is inevitable as we grow and develop throughout the years that our priorities will change. Throughout the last decade, which I believe is considered “young adulthood” for me, I have adapted mine seemingly hundreds of times. The greatest adjustment, however, came with my diagnosis of idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease, at the tender age of 28.

Until my diagnosis of IPF, my priorities had aligned with those of my peers. They included securing our careers, spending time celebrating our friends’ milestones, and buying our first car or house. Many of my peers were focusing on finding their partner and getting married or “settling down.”

I was still in the career phase at the time of my diagnosis, but the others would follow shortly. Unfortunately, my course changed dramatically when IPF suddenly thrust itself into my life.

I remember being told that the doctors were unsure how my disease would progress, since I was so young. I was told that there might be no change over several years, or that everything could be different in a few months. Unfortunately, the latter statement was correct — within six months, I was lugging around oxygen. This left me very frustrated and sad. I’d go as far as to say I was depressed in the short term following my IPF diagnosis. During this difficult time, my priorities started to shift.

Suddenly, I was reevaluating everything that I’d considered important in my life before my diagnosis. Was working so hard to establish my career important now? Should I be saving as much money as I was? What about my dream of being a dog owner? Would a pet outlive me?

All these questions were running through my mind, and I had no idea which goals to emphasize now that I was living with an earlier expiration date than my peers. I felt lost and confused. This was a dark time in my life.

Thankfully, opportunities have arisen since my diagnosis that I never would have imagined, and along with them, friendships that I never expected. One instance is when I became a columnist with BioNews Services.

Connecting with other rare disease patients and having colleagues who understand what life with a chronic illness is like has been life-changing for me. Their stories and experiences have also inspired me to reevaluate what I consider to be priorities in my life. Things I used to think were important don’t matter to me as much anymore, and that has ultimately been a gift.

Recently, I had another pulmonary function test that revealed a decline in my lung function. This always sends me into a downward emotional spiral for a few days. Thankfully, I have recouped from it, but I am left pondering my priorities again. I also often wonder what other patients living with IPF choose to put first.

Here is my current list:

  • Traveling: I am aware that seeing the world is not going to be an option for me forever. As my disease worsens, there will come a time when I will no longer be able to travel. Unfortunately, I have student loans, so my finances limit my options, but I’ve come to realize that my trips don’t always have to be extravagant. I can simply explore parts of my country and province that I’ve never visited before!
  • Spending time with my dog: My 3-year-old golden retriever makes me so happy, and I need that happiness as I navigate this life-threatening lung disease. Therefore, I set aside time with her in the evenings. I also benefit from the quiet, as my days at work are very busy and filled with social interaction.
  • Family events: I enjoy spending time with my family at our cottage in the summer and just relaxing on the beach. I’ve come to realize how important my family is to me and how important it is to be around them often. 
  • Reading: In addition to appreciating the quiet weekends I get to spend at home, getting lost in a book helps me forget about some of the difficulties of living with IPF. Reading has proved beneficial for me mentally and physically, so I am now spending more time with some of my favorite authors. 
  • Self-care: It seems obvious, but I never prioritized self-care in the past. Now it is extremely important to me and I don’t feel guilty about saying no to something that will jeopardize my time for self-care.

 What do you prioritize as a patient with IPF/PF? How have your priorities changed since your diagnosis? Please share in the comments below.

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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.

3 comments

  1. Robin Read says:

    I am 78 and have had IPF for 3 years,can,t imagine getting the news at your young age.One of the threads that I pickup from your postings is the best way to cope is to look outward. This has really worked for me, I have been very open with family and friends right from the get go,I outlined very clearly my limitations and how they could help, flu shots ,avoid me when you have colds, don,t take it personally when I say I am not up to that. I have limited my travel lately to shorter trips to avoid fatigue.I do my best to ignore the side effects of my medication and carry on my normal activities as best I can.As my wife said you have to make the best of what you have,it is easier if you do.

    • Charlene Marshall says:

      Hi Robin,

      Thank you so much for reading my columns and getting in touch via the comments! Thanks for sharing a bit of your story with IPF, and for your kind words; although I am really sad this disease is what brings us all together. I’m really glad my posts are even a bit helpful, encouraging you to be open and upfront with your friends. Good for you for outlining your limitations and what friends/family need to do to help you – this is not always easy so kudos to you! 🙂 Your wife is absolutely correct, we have to do the best we can to make the best of our situations but this is easier said than done I agree. Take good care and wishing you nothing but the best Robin.

      Cheers,
      Charlene.

  2. April Tierney says:

    What I found difficult was that before any medication could be given, I had to go through having a biopsy of my lung. My lung had to be deflated and then three specimens was taken. Recovery wasn’t the greatest, but getting better as the days go by.

    Before any medication can be given, I had to wait for the results of the biopsy. This didn’t take too long for which I was greatfull. When I visited my doctor’s office she confirmed that I had IPF. She then told me that she could not give me any medication as yet. My case had to be reviewed by a board and medication would depend on the board’s approval. I found this information rather disheartening. I was going to have to wait another four weeks to see if the board has approved my case.

    I basically have put my life on hold until I hear the results of the board. Hopefully, when I see my doctor this week she will be able to give me the medication that I need to help slow down this disease.

    A

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