Reflecting on Another Birthday With IPF

Charlene Marshall avatar

by Charlene Marshall |

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A doctor once told me he wasn’t sure I’d survive until my 30th birthday. If I did, I’d likely be dependent on supplemental oxygen, unlike any other young adult I knew at the time. This week, I turned 34. Reflecting on my nearly six years with idiopathic pulmonary fibrosis (IPF) is emotional for me.

After a 13-month journey, I was diagnosed in April 2016, and vividly remember my conversation with the specialist. He wasn’t sure how my disease would progress because I was only 28 at the time, but said the years ahead would be challenging, as the fibrosis in my lungs would cause significant shortness of breath. I was determined to outlive the prognosis for IPF patients.

While that determination has served me well, the last several years have still been tough. Exacerbations and exhaustion have kept me from doing things I love, and the COVID-19 pandemic has brought additional stress. But despite all the difficulties, I am grateful for another year.

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I’ve always been reflective, and enjoy looking back on each year and noting what I’ve accomplished. I often write down the highlights around New Year’s and tuck the list into a memory box. Since my IPF diagnosis, I value reflection even more, and birthdays seem like a natural time for it.

Following are some of the things I am most proud of from the past year.

Kayaking

For many people, kayaking is an opportunity to spend leisurely time on the water. For someone with IPF, however, kayaking is a workout, albeit an enjoyable one. It works my lungs and body, which is important because exercise benefits people with lung disease.

This summer, I purchased the kayak I’ve wanted for years, and had a roof rack installed on my SUV to transport it. This was partially because I love kayaking, but also because it’s a safe activity amid COVID-19 lockdowns. I thoroughly enjoyed being able to kayak this summer and have no regrets about the cost. I consider it an investment in my health!

Starting a new job

In early January, I started working for a community agency I’ve long admired, and am proud to be able to help children and families through my job. Because mental health struggles have increased due to the pandemic, I’ve been very busy. This can make it difficult to stay on top of my duties, given the fatigue that IPF causes. However, this year has undoubtedly been one of the most meaningful in my career, and I am excited to continue my professional growth with this agency for years to come.

Spending time with friends

While international travel remains a challenge due to COVID-19, many Canadians explored our own country and traveled domestically. I spent quality time with friends on Canada’s east coast this September, and those memories won’t soon be forgotten.

A collective PF project

In October 2020, I wrote a column about the importance of peer support for IPF patients, as I’d recently launched a support group in collaboration with the Pulmonary Wellness Foundation (PWF). This patient group has been working incredibly hard on a project this year: I am very proud to share that a book about PF will be released in the coming weeks. It is written by patients and Dr. Noah Greenspan, who founded PWF.

Our vision was a book “for patients, by patients.” We have compiled all our knowledge about living with IPF with the goal of making others’ journeys easier. This is one of the most meaningful projects I’ve ever worked on, as my co-authors live around the world and have vastly different experiences with the disease. As a result, writing collaboratively was difficult at times, especially after the loss of three co-authors along the way. However, we are proud of the final product, and look forward to launching the book.

Here’s to another great year!

***

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

Brian Patterson avatar

Brian Patterson

Hi Charlene, Your attitude inspires. Can't wait to buy and read the book!

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Charlene Marshall avatar

Charlene Marshall

Thank you so much for your kind comments, Brian! I will be sure to write a column about the book so you know when it's available. You can pre-order it on the Pulmonary Wellness Foundation's website now if you like :) Take care and happy holidays!
Char.

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Manzoor Ahmed avatar

Manzoor Ahmed

Recently I am recognized of having IPF. I am yet to start medication because it will take time to reach me . Reason is unknown. Obviously I am quite nervous because I have been suffering of other ailments in addition to IPF. I found that this disease is incurable and shortens the life quickly.

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Charlene Marshall avatar

Charlene Marshall

Hi Manzoor,
Thanks so much for reading my columns and reaching out via the comments. I'm sorry to hear of your IPF diagnosis! I hope you are able to access the medications soon and that your side effects aren't too difficult to manage. Wishing you well, Char.

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Brian Friesen avatar

Brian Friesen

Hi Charlene, I always enjoy your posts for their positivity and compassion. I'm amazed that as a young person you can be so upbeat while dealing with this awful disease.

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Hans Fink avatar

Hans Fink

Happy Birthday, Charlene

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Steve Dragoo avatar

Steve Dragoo

Hi Charlene - a compelling testimony and your community spirit on your new job starting a year ago, I remember talking with you about it. I was recovering from the acute exacerbation then and could barely stand. You staying in touch is a blessing and you have more talents to use and give than you may know... - Safety, Steve

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Sandra Hackett avatar

Sandra Hackett

Hi Charlene it is a pleasant reading your stories I was diagnosed with IPF 18 years ago. I was on oxygen for a few years then came off for a few years. Then 6years ago I am using oxygen again. I am seeing the Transplant team but I have to loose weight which I am doing, the next step will be going on the list for a lung. Keep up the good work doing what you are love wish I could get around more than I do. Using oxygen 24/7 6 liters at rest and 7 liters when I am going outside on cylinders. Take care stay safe hope that you had a wonderful birthday ???????

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Christopher LEATHER avatar

Christopher LEATHER

Hi Charlene.
I am very new to IPF having been diagnosed only a few weeks ago. Next week I am going on one of the two medications available not for a cure but hopefully give a little extra life/years.How to judge which one is good for you?
I most certainly will buy your book I am at the stage where I just want honest answers to straight questions no matter how direct. forwarned is forarmed! I am still coming to terms with the diagnosis good days and bad but living in the real world as apposed to flacky ides like lighting candles or incense to increase life! I just dont know!

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Charlene Marshall avatar

Charlene Marshall

Hi Christopher,
Thanks for reading my columns and reaching out via the comments! I replied to your comment on the forum about where to buy the book. I hope its helpful :)
The medication I'm on was determined in part by my lifestyle and low tolerance of side effects. Esbriet is very sun sensitive, and I love to be outside in the summer so I factored that into my decision plus the side effects (a rash) were rough for me. Ofev wasn't any easier to tolerate originally, tons of GI symptoms but after a few attempts and trials, I could tolerate it.
Hope this helps,
Char.

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