Pulmonary Fibrosis Is Like a Storm Cloud Over My Future

Pulmonary Fibrosis Is Like a Storm Cloud Over My Future
4.6
(23)

It’s common for young adults in their early 30s to plan for their future. For some, this might include planning for a beautiful wedding or having a family. For others, it might mean traveling the world, buying a dream home, or landing the ideal job.

My ideal future would include each of these things, but thanks to idiopathic pulmonary fibrosis (IPF), my real future will be uncertain. This cruel, life-threatening lung disease makes planning for the future a daunting task.

Since my IPF diagnosis four years ago, I’ve spent a lot of time focused on having quality moments. This is still a work in progress, but I wish everyone would celebrate small moments with loved ones. No one is guaranteed a tomorrow.

While social distancing, I celebrated a retirement and a birthday last weekend with friends and family at our beach house. Later, while lying in bed and reflecting on my day, I realized that a milestone like retirement won’t be something I likely will be able to celebrate. That thought led to many others about my future, and how mine will be different than those of my peers.

I’ve been invited to other milestone celebrations in the next several months, including baby showers and birthdays. I plan to attend if masks are used and social distancing is practiced. But I often feel uneasy after attending these types of events. IPF has made my future more uncertain than for most other young adults. IPF feels like a storm cloud hovering over my future, clouding the path of what I might have achieved.

Some friends have asked why I don’t continue my life as if it were so-called normal, because no one knows what the future will hold. I agree to an extent, but I still think about how IPF has made accomplishing my goals more difficult, or how it will change the ideal future I had envisioned before I got sick.

With all of this in mind, the following are examples of how IPF has interfered with my dreams for the future.

Infertility

Many courageous colleagues at BioNews have written about this topic. While they have different conditions than I do, their grief from being unable to have children feels the same for me. I wasn’t even sure I wanted children, but the idea of that option being taken from me due to IPF is disheartening.

As my colleague Brittany Foster shares at Pulmonary Hypertension News, it’s hard not to feel angry, frustrated, and sad, not only with my body, but with the world in general. Although I hadn’t made up my mind about children, I wonder why this option was taken away from me.

Added financial hardships

Two years ago, I wrote about the additional costs of home ownership as a patient with IPF. Most often, this is due to prolonged time away from a job, but it also can be caused by many other things.

I love where I live, but I worry that my home won’t be as accessible as I need it to be as my disease progresses and my mobility decreases. It irritates me that my lung disease will have to be factored into the purchase of any future homes rather than me following my dreams as a young girl of having a a home in the country with a white picket fence, access to the ocean, and lots of land.

Traveling the world

I never wanted to choose between traveling and having a family of my own, so I thought I’d be spending my late teenage and early adult years traveling before I “settled down.” I am 32, and while I’m grateful for still being able to travel, it is becoming harder due to IPF.

Currently, I can fly with my FAA-approved portable oxygen concentrator (POC), but as my oxygen needs increase and a POC is no longer sufficient, my traveling days will need to cease until after transplant.

Starting a family, buying a home in the countryside, and traveling the world are three dreams I had for my future before I got sick. It’s hard not to feel like other aspects of my future will be clouded by this cruel lung disease as well.

***

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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Charlene is a fiercely independent 30-something woman who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
×
Charlene is a fiercely independent 30-something woman who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
Latest Posts
  • story, cold temperatures, toxic positivity, peer support, before and after, exercise, power outages, productivity
  • story, cold temperatures, toxic positivity, peer support, before and after, exercise, power outages, productivity
  • mask, why
  • story, cold temperatures, toxic positivity, peer support, before and after, exercise, power outages, productivity

How useful was this post?

Click on a star to rate it!

Average rating 4.6 / 5. Vote count: 23

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?

6 comments

  1. Dear Charlene, I have not seen any other comments posted by your readers in response to this article, and I also put off commenting– I think it might be because we are simply sad to read these words, and you and all IPF folks deserve more than empty platitudes. We all have hope, but at the same time, need to face reality in order to plan for our best possible future. And that’s hard at times, especially these days. We can’t always be strong and positive, and everyone here knows and understands that. Thank you, Charlene, for your openness and honesty. I so look forward to that day when you can express a clear, open path forward, post- transplant. Sending you a huge hug.

    • Charlene Marshall says:

      Hi Holly,

      As always, thank you so much for reading my columns and reaching out via the comments. I love hearing from you! This was a tough topic to write about, and even tougher to share with the world but I think it’s important to broach vulnerability in my writing, in case it touches/resonates with others when they need it. Thank you for your kind words on this topic, and for always being such an inspiration and encouraging source of support. I can’t wait to meet you and Christie post transplant!
      Hugs,
      Char.

  2. Paul says:

    Hi Charlene,

    Nice piece. You’re young and without any debilitating co-morbidities your post-transplant prognosis will be good. I am four years post and actually getting fitter and stronger each year. Not a day back in hospital. Perhaps I’m lucky but do take hope that you can still live a long life. Just keep taking the drugs 🙂
    See you in Australia after the pandemic settles. The travel insurance is horrendous but we have great thoracic hospitals who will look after you if you have any complications.
    Paul – Byron Bay 🙂

    • Charlene Marshall says:

      Hi Paul,

      Thank you so much for reading my columns and reaching out via the comments. I really appreciate your kind words and positivity – the latter is what gets me through the tough days as well, along with hearing of stories like yours! Thank you for sharing and congratulations on how successful your transplant has been. How wonderful! I will definitely be back to Australia – it is my second favourite country, so when the dust settles post the pandemic, I’ll be back! 😉
      Take care,
      Char.

  3. Linda paradise says:

    Dear Charlene-
    I always read your posts with great interest! I can commiserate with you on your recent post. You feel as if your future is definitely limited. My mother had COPD 20 years ago when the prognosis was not as good as today and being a stubborn woman she did not follow her doctors advice. When she fully understood what having a progressive disease meant she gave up saying, “I have no future.” That is what “did her in.” I am happy to hear you talk about future plans especially traveling and a lung transplant! You are a brave young lady! I myself do not wish for a lung transplant. Mostly the whole idea terrifies me! I have had IPF for 12 years now with no change in the mild status and symptoms just beginning in September of 2019. I actually feel really good except for shortness of breath. And I am not worried about my future. I am still working (teaching).And I am looking forward to selling my small raised ranch and moving to a smaller condo that I fell in love with!

    • Charlene Marshall says:

      Hi Linda,

      Thank you so much for reading my columns and reaching out via the comments. It’s so nice to hear from you, and while I wish none of us could relate to my words regarding this terrible disease; it’s nice to know my columns resonate with others. I’m so glad to hear that you feel really good in general, aside from the shortness of breath and I hope things stay stable like this for a long time for you, Linda! I know a lot of people who would be really inspired to hear that you’ve managed with this disease for 12 years, thank you for sharing that. I hope you continue to teach as long as you can, and best of luck with your move. Your current home sounds beautiful! Take good care and feel free to write any time.
      Sincerely,
      Char.

Leave a Comment

Your email address will not be published. Required fields are marked *