4 common myths about IPF I wish I’d known after my diagnosis
Columnist Charlene Marshall shares the truth about living with IPF
Writing can be therapeutic. As a therapist, I often encourage my clients to write as a way to process trauma, release emotion from their body, or organize their thoughts ahead of a difficult conversation. Whether they’re writing a letter, column, or journal entry that they plan to share or keep private, the process can be liberating.
After I was diagnosed with idiopathic pulmonary fibrosis (IPF) in April 2016, my late friend Serena Lawrence persuaded me to start writing for Bionews, the parent company of this website. She believed I had insight to share with the PF community — specifically, what it’s like to live with this lung disease as a young adult.
Over the years, it’s been a privilege to receive emails from readers who share that my column resonated with them or helped them navigate a certain aspect of life with this disease. Writing about my life with IPF has been therapeutic for me, and I’m so grateful that it’s helped others, too.
With that said, I often default to writing about topics more applicable to longtime patients, such as managing life with oxygen, traveling with a lung disease, or dealing with medication side effects. What I want to know about life with IPF now is far different from what I was pondering when I was diagnosed.
As I approach another anniversary of having IPF, I’ve been reflecting on my frustrating, 13-month diagnostic journey. I was relieved to finally have an answer for the symptoms I’d been experiencing, but quickly began searching for more information. Unfortunately, I came across many myths instead.
In honor of that reflection, this column is for newly diagnosed patients who may be in the same frantic state I was. Following are four myths about IPF I wish someone had explained to me after my diagnosis.
Myth: There’s always an identifiable cause
Much of what I initially read online about this disease related to its causes. In my vulnerable state, I desperately searched for what could have caused me to develop a life-threatening lung disease as a healthy 28-year-old.
To my knowledge, I have no family history of lung disease, which seemed to rule out a genetic cause. I’ve never smoked and wasn’t around any secondhand smoke growing up, and we never had any asbestos or mold issues.
It was hard to accept, but the reality is that pulmonary fibrosis doesn’t always have an identifiable cause. It can be idiopathic in nature, meaning physicians don’t know why it developed. This was the case for me.
Myth: The prognosis is 3-5 years
Understandably, anyone who reads this information online following an IPF diagnosis would be devastated. Fortunately, the prognosis data are outdated; unfortunately, the information is still readily available on the internet.
PF progresses differently for everyone, but in my experience of interacting with fellow patients, I know many who were diagnosed over 10 years ago.
Myth: Anti-fibrotic medications stop IPF progression
I wrote about Ofev (nintedanib), an anti-fibrotic medication, when I started taking it a few years ago. Many readers, as well as my own family and friends, have commented that they’re glad I’m on a drug that will “stop the progression” of my disease. However, while the two anti-fibrotic drugs approved for the treatment of IPF are effective at slowing disease progression, they don’t stop it entirely.
It’s been less than 10 years since the U.S. Food and Drug Administration approved Ofev and Esbriet (pirfenidone) to treat IPF, and I’m grateful patients have access to them. Based on all the dedicated researchers and physicians in the field of fibrotic lung diseases, I feel in my heart that we’re not far from finding a therapy that does stop disease progression.
Myth: You can’t live a quality life on supplemental oxygen
I wish there was an objective way to prove this, but all I can say is that it’s a myth. I’m living proof that life can still be good for supplemental oxygen users. I’ve flown to different continents, hiked, swam, and kayaked — all while tethered to an oxygen tank. As a result of my IPF and oxygen use, I’ve even formed lifelong friendships that I never knew I needed. If you don’t let the disease consume you, it’s certainly possible to enjoy a good quality of life.
What are some IPF myths you heard after your diagnosis? Please share in the comments below.
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.
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Comments
Paul Caden
another inspiring commentary from this young fellow Canadian. Thks Charlene I am coming up on year 4 in august and really hope that with the help of AI they will find a drug to stop this disease in its tracks:) Keep on with your wonderful thoughts and thks.
Peggy Jamison
I sure would love to know how you kayak on oxygen. I want to learn how to kayak, it’s on my list but I need 4 ltrs currently.
Jofac O'Handlin
Dear Charlene,
In simple terms, I agree with no1, an identifiable cause. I worked as a student at home in the UK in my late teens, and then later as a 'landed immigrant', in power stations in BC, from Stweart near Alaska to Golden in the Rockies. I thought that the toxic atmosphere in such places might be to blame, but when my sister was diagnosed and survive only 18 months relised that it was more likely genetic. She never worked in overtly toxic atmosheres. Neither of us smoked, though probably suffered passive smoking, busses, pubs, clubs, cinemas & etc.
In no 2, I was made aware at the beginning that the anti-fibrotic mdication was not a cure, and looking at the stats wondered if it was worth it. Almost 9 years on I think that clutching at the straw in 2015 was the right thing to do. Possibly reducing the damaging exacerbations.
I am discovering that there is a life on oxygen. Friday 13th January was the day that I had to accept the need for 24/7 support. Up to then I was able to survive a sedentary life without, only using O2 when out walking.
When this occurred I was very disappointed, and met up with my motorcycle group to say an emotional fairwell. But I am adapting to life on oxygen. Today, I practiced a folk song with the intention of doing it at an 'open mike' afternoon. I turned up, but the youthful exuberance of the others caused me to chicken out! I might even have done a bit of Robert Service. Perhaps 'The Song of a Wage Slave'. So keep active. Trying to compile a family history, ... slowly.
I would like to ask you to look at the IPF specialist area (cannot remember the title) to do with treatments. I have posted a rather too long item there regarding aspirin. The question I pose is, if aspirin is a likely antifibrotic, as suggested in the mice studies, and as it is a well tolerated treatment for other diseases, then could an alternative method of delivery be researched to avoid the gastro-intestinal route with the aggravating effects on the GI tract.
Low dose aspirin is NOT recommended for those over 65 years of age.
Kind regards,
Joe
Adele B Friedman
Very good!
Conni borwick
Charlene
Please help by sharing how you can swim with oz? I would love to swim but don’t know what to do with the poc unit or the tank? Do you have some one there to hold the unit? Also if you are traveling are you able to fly with enough oz? I am on 4/5 ml so does not look like I can do a longer flight? Any help would be welcomed !
Nathi
Your words are very uplifting, thank you so much for sharing!