Why I Continue to Write About IPF 6 Years After My Diagnosis
The days surrounding April 7 each year are emotional for me. On that day in 2016, I was diagnosed with idiopathic pulmonary fibrosis (IPF) at the young age of 28. Like many others, I’d never heard of IPF and knew nothing about this life-threatening and debilitating lung disease. Moreover, as an active young adult, I was oblivious to the fact that I could be diagnosed with a serious respiratory condition in my 20s.
I began writing this column shortly after I was diagnosed, which is hard to believe now. I have been a part of the Bionews family for nearly six years and have grown to know and love many rare disease patients who are also employees of this organization, which publishes multiple sites including Pulmonary Fibrosis News. Over the years, this column has given me a platform to advocate for those with IPF — a coping mechanism I didn’t even know I needed.
When I tell others about this column, I’m often asked how I find topics to write about. I admit, coming up with a topic is harder some weeks than others. But I learn so much from navigating life with a chronic lung disease, and I feel responsible for sharing those lessons with others, especially if they make life just a little easier for my fellow IPF patients.
That same feeling of responsibility is why I, along with fellow patients and Pulmonary Wellness Foundation founder Dr. Noah Greenspan, embarked on a two-year project to write a comprehensive book about living with IPF and other interstitial lung diseases. I truly believe that patients’ perspectives and knowledge are invaluable.
Another goal of this column is to discuss disease management, as only those of us with the disease can speak to lived experience. As patients, we are our best advocates, and our learning is never done — especially when our disease is rare.
Sometimes this column has been focused on simple tips and tricks, whether it’s how to manage the side effects of anti-fibrotic medications, or how to make activities of daily living, such as showering, easier. Other times it’s been a platform to process the emotionally and mentally difficult aspects of this disease, such as losing friends to IPF or facing either lung transplantation or palliative care options.
But in addition to these tough topics, I also share celebratory moments and opportunities I’ve received as a result of IPF. I intentionally try to write about things IPF patients can still do despite their lung disease, such as traveling, camping, or celebrating milestones and holidays with friends and family.
Regardless of the topics I choose to write about, I’ve always had three main goals for my column.
First, I want other IPF patients to feel less alone and have someone who can relate to their experiences. I strive to read every comment left on my columns, and it never gets old when someone shares that my words resonated with them, or that my writing helped them on their IPF journey in some small way.
Second, as mentioned above, I want to share what I have learned about living with IPF so that others’ experiences are just a little easier.
Third, and arguably most important, I want this column to demonstrate that the prognosis for IPF patients isn’t always accurate. While the data are outdated, a three-to-five-year life expectancy after diagnosis still pops up with a quick Google search, and this understandably terrifies those who are newly diagnosed. Please consider my experience, and this column, proof that you can live beyond those predicted numbers.
I’m grateful to have had this platform to engage with so many of you over the years!
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.
About the Author
Comments
Christine Boswell
What a strong positive young lady Charlene is. I was diagnosed a year ago at 69 years of age. I was so disappointed as I saw myself as a very fit healthy person and though I would love a long life. I never take medication and hardly ever visit my GP. I live in the UK and still love my life. I have this notion that I will still live a long life even with this condition right or wrong....I feel guilty when I read some people's condition with this IPF. However many days I am tired and lethargic but days I am not I try to live life to the full. So thank you for this blog Charlene it has certainly given me hope.
Xxx
Jean Bordu
Hello Charlene - Thanks for sharing your thoughts and your experiences with us. It is very refreshing to read your perspective on how to deal with this condition.
Keep up the good work, and showcase how to beat this condition.
Best wishes,
Jean Bordu
Awilda Irizarry
My 71 year young husband, was diagnosed with IPF this past January after attracting COVID from a co-worker. While previously diagnosed but not treated for COPD, I believe the IPF was there but not detected until COVID struck and aggravated the condition.
With this being said, he is being treated with a drug called, "OFEV." along with Mucinex and Selcept. However, he is forever spitting out mucous which seems to be part of this disease making it uncomfortable for him when we go out to grab a bite to it. It never, never seems to stop! Can some one PLEASE tell me will this ever STOP and WHEN?? I am at my witts end in trying to help him with this issue!!
ANY and ALL HELP IS GREATLY APPRECIATED. THANK YOU, THANK YOU and THANK YOU.
AWILDA
Steve Dragoo
Awilda,
At 73 (next month) and 5.5 years into IPF (initially diagnosed as ILD), I had a growing mucous problem several years ago and started searching for ways to counteract this particular side effect of IPF. Success! But it is a regimen of several supplements and caution with what I eat. If you want more information please reach out... Steve
Jacques Lacasse
Hi Charlene I been diagnosed with IPF a year ago at 69. IPF has struck me like a ton of brick almost overnight. I am still very frighten by this cruel disease.
But reading your articles give me hopes day after days
Thanks You so much
Quebec City Canada
Steve Dragoo
Dear Friend,
I admire and appreciate your dauntless courage and demonstration of consistency that encourages many others. You have inspired me on many occasions over the years and trust your strength will grow in faith... Stay well - Steve
Cynthia Grant
I was diagnosed at 58 (2 years ago). Of course this diagnosis tested my faith. It made me super nervous. I had never heard of this diagnosis.
Overall I am/was pretty healthy. Thanks to every that post in this forum.
Will Gale
I am 85 years young and last year was diagnosed with IPF and immediately put onto 150mm OFEV no noticeable effects for about a month and then started to feel lethargic and loss of appetite, after six months with daily violent vomiting my dose was reduced to 100mm two months later my GGT liver enzyme went from 34 - 356 with serious accompanying lethargy. I stopped the OFEV all together now two months later the GGT levels are down to 240 still 8 times normal level. Examination of my liver showed no disease or disorder. Will now waits two months more before any consideration of going back on it. Has anyone experienced the same or similar effects? Thanks
kathleen a behr
Hi Steve,
Can you help me with some suggestions with my IPF and mucus. I've had pulmonary fibrosis since 2017. My brother had it and survived with a double lung transplant for another 5 years. My name is Kathy, I live in Pittsburgh. Any suggestions would be gladly appreciated. If I can help you in any way, please reach out to me.
Kathy
[email protected]
Shirley Leeper
I understand your husband's feelings since I too, bring up a lot of mucus. It is so embarassing to have to cough and cough until you can bring the mucus up, especially if there is someone around you. I find that nebulizing helps calm my cough down and I bring the mucus up more easily. My oxygen level runs around 93 so I don't use oxygen nor do I use afev or esbriet for which I'm thankful. My disease seems to be the very slow progressive type so I'm probably going to go downhill vary slowly. This doesn't sit well with me since I'm 94 yrs old and have had this disease for many years. I take each day as it comes which some days I'm too weak to dress then other days I feel a little better, but never good. I'm taking each as it comes, but being house bound is challenging. When someone asks me how I am my reply is hangin' in there. Hope this helps your husband's feelings on bringing up the mucus.