Pulmonary Fibrosis Alters the Trajectory of Our Lives

Charlene Marshall avatar

by Charlene Marshall |

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Many significant milestones in life occur during young adulthood. Some may buy their first home, get married, and start a family, which is a typical trajectory. Unfortunately, idiopathic pulmonary fibrosis (IPF), a progressive and fatal lung disease, doesn’t care about typical trajectories. It unapologetically interferes with the lives of patients who have it.

I knew from an early age that I wanted to prioritize travel when I became an adult. I didn’t give a lot of thought to whether I would do it alone or with a spouse, because ultimately it didn’t matter to me. I was OK going on my own or sharing travel experiences with a partner. I focused on my dream of traveling throughout my teenage years and set out on my first overseas adventure in my early 20s.

I was given an incredible opportunity to study overseas, which further intensified my love of travel. Ironically, it was during a trip when I became symptomatic with an interstitial lung disease in 2015. The following year, I was diagnosed with IPF. But despite IPF, I have continued traveling with adequate preparations in place.

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Now that I’m in my early 30s, travel is still a priority. However, I acknowledge that I’m in the period of adulthood when other milestones are “supposed” to have occurred. I thought about this as I prepared for a close friend’s wedding recently.

I have been privileged to join many of my friends in their weddings. I’ve also been able to watch them experience pregnancy, and I’ve gotten to hold their beautiful children.

I’m not married and don’t have kids, which doesn’t bother me. But my heart aches for fellow patients who desperately want to get married and have kids, but their disease prevents them from doing so.

This is just one reason why IPF is so cruel: It prevents us from achieving the same goals or reaching the same milestones that our peers do, either due to physical limitations like shortness of breath, supplemental oxygen, or fatigue, or the mental and emotional toll of just fighting to survive.

Many patients invest their already limited energy in trying to outlive the prognosis given to us; we often don’t have the time or the energy to compare what others have with our own situations. This can be a blessing in disguise, as comparisons are often the thief of joy. However, sometimes reality hits and makes us realize that our chronic illness has altered the typical trajectory of our lives.

While not always easy, I try to focus on the opportunities that IPF has presented me rather than on the things I don’t have. I try to remain grateful because the vulnerability of sharing my story has led to many amazing connections, opportunities, and friendships I wouldn’t have had otherwise.

I’m proud to say that I’m still prioritizing travel, but I didn’t prioritize other milestones in my life, such as marriage and children, because of my IPF diagnosis. I’m OK with this, but I know others aren’t.

To my fellow IPF patients: Are there milestones or goals that haven’t happened because of your diagnosis, either intentionally or unintentionally? If so, how do you cope? 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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Jim McCool avatar

Jim McCool

Great info.................

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Ola avatar

Ola

Thank you Charlene for your candid piece and I'm happy that you are able to engage in some of the activities you enjoy. I struggle alone because very few people know about this debilitating disease where I live. I would appreciate it if you can reach out to me.
Love

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Charlene Marshall avatar

Charlene Marshall

Hi Ola,

Thank you for reading my columns and reaching out via the comments. It is nice to hear from you and thank you for your kind words on my column. I'm sorry to hear that you are feeling alone in your diagnosis and that not many people know about IPF where you live; that must be very hard. Have you considered joining an online PF support group to chat with other patients, or looked it up on the PF registry if there are any groups nearby you? Those are good places to start! I know for me, connecting with other patients really helps me feel less alone. Feel free to write anytime, we are here for you.
Charlene.

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Ronald Cole avatar

Ronald Cole

Thank you Charlene your article was very helpful. Although I have 3 children and have done a bit of traveling. Limitations are real and an eye opener.

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Charlene Marshall avatar

Charlene Marshall

Thank you for reading my columns and the kind words on my writing, Ronald. Wishing you all the best with your PF journey and know that others are here for you if you ever feel the need to chat. Dealing with PF and 3 kids must not be easy, and I know the limitations can be very hard. Hang in there and know you aren't alone!
Char.

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Lori Ward avatar

Lori Ward

Charlene, Thanks for sharing with us as you journey and navigate through life with IPF. You are an inspiration to many! Having just been diagnosed at 63, I have reached the milestones of marriage, children and even grandchildren and for that I am truly thankful. I recently retired so I could spend more time developing my relationship with God, family and especially my grandchildren. Having watched my father and 2 older sisters die from IPF and a 53 year old nephew go through a double lung transplant due to IPF, I knew that I wanted to do as much with my grandchildren and travel to see them before I will have to be on oxygen. I do mourn the fact that I will probably not see most of them graduate or get married, but I try to live in the present and be grateful for the time I do have with them! The loss of my income limits what I can do, but I would love to travel and visit some good friends and cousins before I have to be on oxygen. These are things I might not have made such a priority before I was diagnosed so some good that has come out of having IPF is making sure to live the rest of my life to the fullest with those I love. God bless! Lori

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Charlene Marshall avatar

Charlene Marshall

Hi Lori,

Thank you so much for reading my columns and reaching out via the comments; I loved hearing from you! I really appreciate your kind words, and hearing how you are managing your new diagnosis by focusing on the things you love. It sounds cliche, but this is so important. Living in the moment is also crucial to our happiness too, although I know that is not always easy. It sounds like you're doing everything you can to embrace each day, kudos to you! It's not always to reframe our thoughts this way, and I know many would disagree with me (understandably so) but if you look quietly: there are gifts this disease gives us, isn't there? Focusing on quality moments vs. quantity is one of those! Thanks again for writing and take good care. Keep in touch!
Char.

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JOSE L FERRER-LOPEZ avatar

JOSE L FERRER-LOPEZ

Am 75 years old and diagnosed with End-State PF. I am shooting for 25 more yeas to hit the century mark.

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Brenda Gaier avatar

Brenda Gaier

I'm curious about how you got the end state diagnosis. Mine showed up on a heart image May of 2020. With Covid, I couldn't get into a Pulmonary Dr until April 2021. He sent me to specialists in Rochester MN. I had to wait to get my second vaccination then go there on June 1, 2021.
I have has a lot of different tests, imaging, and doctors. No one commits to any stage I might be in. I asked my Rheumatologist on Monday and he said in October when I'm retested they should be able to tell how fast it's progressing. I'm 69 and have had a very good life. I am worried about my end of life and how hard it will be as it becomes harder to get air. I'm on oxygen now when I do things. I don't like the gasping I already do. Thanks.

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Charlene Marshall avatar

Charlene Marshall

Great goal Jose - remaining positive is an important part of the journey!
Char.

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Brian Friesen avatar

Brian Friesen

Your comments certainly resonate with many of us. Although my diagnosis came later in life, it still does change the way we live.

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Charlene Marshall avatar

Charlene Marshall

It sure does Brian, hang in there and know that this community is here to support you. Thanks for reading my columns and reaching out via the comments.
Char.

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Carol Dyck avatar

Carol Dyck

Thank you Charlene for your well written journey with IPF. This disease took hold of me in 2014 when I had a shoulder replacement. An xray showed scaring on the lungs and a year later IPF was confirmed. I consider myself very fortunate to have travelled to all four corners of the world with my wonderful husband. In November I will hit the 85 yr. mark and at this point in my life IPF is the only negative. It's hard to stay positive at times, knowing there is no hope of a cure, but with the use of oxygen, OFEV and a caring Doctor, I try to stay happy and live for every day. Thanks Charlene .
Carol

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Charlene Marshall avatar

Charlene Marshall

Hi Carol,

Thank you so much for reading my column and reaching out via the comments. I really appreciate hearing your story and that you have been able to travel, and see IPF as the only negative in your life at this time; what a great outlook! It is hard to stay positive at times, but it is an important part of the journey for sure. Take care and thanks for writing - it's nice to you have a caring doctor in your corner!
Much love,
Char

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Don Salzberg avatar

Don Salzberg

Charlene:
As always your words really reach my heart and hit home. Discussing how ones “life’s trajectory” changes it so spot on. I had a huge busy eye surgery practice and loved every minute (well most) but when i received my diagnosis (age 63) of IPF everything needed reevaluation. Then came Covid-19 and bye bye practice. I’ve been so blessed with kids and grandchildren and travel etc. Now i really have to learn how to LIVE again. I’ve been fairly stable thank God but eventually I will need more medical help. Your courage and “vulnerability” as you so aptly put it motivates me to share and try to help others. As a physician it saddens me how so many of these stories show how doctors are just either not diagnosing this properly and these delays in diagnosis are not beneficial. Keep doing what you are doing. It’s so huge and important. Just wanted to say thank you for making this all real and less fearful. Good bless you!!

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Charlene Marshall avatar

Charlene Marshall

Hi Don,

Thank you so much for reading my columns and reaching out via the comments. As always, it is great to hear from you! Your comment about everything needing to be re-evaluated once IPF hit really resonated with me; I feel like I've had to do that too, which is never easy. When/if you're ready, there is a lot of amazing work going on in the areas of advocacy and improving time-to-diagnosis/early diagnosis. I'd be happy to have you help us, we'd love your physician point of view! They need to do better, for sure! Really happy to hear my columns are helping, thank you so much for that kind feedback.
Much love to you!
Char.

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Sybil Whimster avatar

Sybil Whimster

Found this site by accident. So full of helpful and encouraging information. Will look forward to reading more

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Charlene Marshall avatar

Charlene Marshall

Hi Sybil,

I'm so happy you found my columns helpful and encouraging! Do take a peak at my co-columnists as well (a fellow patient, one post transplant and a caregiver) as they also have amazing insights to share. The News team does a great job posting informative content too. We're glad you've found us.
Take care,
Charlene.

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