The Top 4 Words I Use to Describe IPF
I have tried countless times to describe idiopathic pulmonary fibrosis (IPF). In 2019, I tried to explain what it physically feels like, but I still can’t find words that adequately convey how hard living with IPF is, especially as it progresses. I never do the experience justice.
Since most young adults don’t have to lug around supplemental oxygen like I do, I’m often asked questions about my disease, such as, “Can you become addicted to oxygen?” and “Does IPF hurt?” I’m particularly sensitive to answering, “What do fibrotic lungs feel like?”
Describing the physical effects is hard, so I try to capture the experience of living with the disease instead. My answers vary depending on how I’m coping, because, like most chronic illnesses, IPF forms a roller coaster of emotions. I experience high highs and extreme lows, so the words I use depend on how things are going at the time.
Many readers know that I co-moderate the Pulmonary Fibrosis News Forums, and love to interact with patients, caregivers, researchers, and advocates on the platform. From reading others’ posts, I know many have also been asked to describe their IPF journey. Even among fellow patients, the answers vary widely.
Following are the top four words I use to describe IPF.
Relentless
IPF is constant — no matter what we do, it’s always there. I often try to explain this by contrasting IPF with an injury. For example, if you break your leg, you’ll likely be ordered to rest until it heals. Sleeping, elevating the leg, and taking pain medications should offer some relief. Unfortunately, even with rest, an IPF patient never catches a break from symptoms like shortness of breath or fatigue. Our lungs never recover or get a break from working overtime due to the fibrosis.
Unpredictable
Sadly, I’ve lost many friends to IPF, and it never gets easier. It’s also often unexpected, as this disease is unpredictable, and many factors can trigger an acute exacerbation. I have learned to value the quality of moments over their quantity, which I’ve written about in previous columns. While no one knows when their time on earth is up, living with a life-threatening lung disease makes it a little more unpredictable. I feel completely shattered whenever I learn about a friend who has died suddenly as a result of their illness.
Cruel
A disease that slowly steals a person’s basic ability to breathe is nothing less than cruel. Like many other chronic illnesses, IPF doesn’t discriminate by age, either. While this disease typically affects people over 60, any demographic can fall prey to its awful symptoms of dyspnea, fatigue, and a chronic, dry cough.
Limiting
As difficult as it is to admit, IPF is an incredibly limiting disease. As the lungs struggle to take in enough oxygen to supply the body, our physical abilities diminish, and intense fatigue sets in. This limits our ability to feel productive or accomplished, as even the smallest tasks can become difficult as the disease progresses.
I’m curious to hear from my fellow patients. What words would you use to describe IPF, and why? 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.
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Comments
DON P BROWN
Thankyou Charlene for your great article describing our disease. Don
Charlene Marshall
My pleasure, Don! Thank you for reading. Wishing you all the best in 2022 :)
Char.
Yvonne Edler von Gorbitz
I wish the overseas Countries can look at South Africa which will not try to assist the people with these conditions. I am begging but the e-mails are not even acknowledged. I wish there is a generic medicine in South Africa as my medical aid nor I can afford $2000 per month
Edward Harris
Would stem cells cure idiopathic pulmonary Fibrosis eventually? Its my friend who has this, not me.
Charlene Marshall
Hi Edward,
Thanks for reading my column and reaching out via the comments. While I do think stem cells are the future of medicine, they are not a proven or effective treatment or cure for IPF. Unfortunately there are some claims out there that stem cells can cure this disease, but they are not legitimate. Please use caution when investigating this and check out the Pulmonary Fibrosis Foundation's formal statement on this topic before making any decisions.
Take care,
Char.
Jay Eason
I think your 4 words describe the symptoms perfectly. I would add, it sucks.
Charlene Marshall
That is one I wouldn't hesitate to add either, Jason! Stay well and all the best in 2022.
Charlene.
Zack Adman
I've been living with IPF for almost six years. The first few years I was somewhat in denial trying to prove to myself that I'm not getting worse and can do pretty much what I could do before. Then my deterioration started and I realized that my life expectancy may be a lot shorter than I thought it might be. My next challenge was when I was told that ignoring my IPF and "overdoing" things like climbing a lot of stairs, walking up hills, etc. to the point of barely being able to catch my breath, was bad for my heart and I should therefore be careful. Then I realized my activity would have to change.
I'm now on oxygen most of the time. All my tasks and errands have to be planned around having enough oxygen. That said instead of feeling depressed I feel very fortunate. I live in a city, Toronto, with a great ILD program at Toronto General Hospital. Despite a lot of criticism of our health care system my experience has been first rate. When I've had to I've been taken in quickly, given the tests I need and have had two surgeries during Covid, unrelated to IPF.
I just try and stay positive, focus on how "lucky" I am outside of IPF. It's not easy and I'm not successful all the time, but it does help me get through the day.
L
Charlene Marshall
Hi Zack,
Thanks for reading my columns and reaching out via the comments. Your disease course sounds similar to mine; I spent a few years trying to prove to myself that this disease wouldn't slow me down also. Eventually I ended up quite sick with an infection, and my heart was under a lot of stress too. Sometimes I think I was silly to do that, but in the end: there is no guidebook on how to live with this cruel disease so alas, I try not to get too down on myself for those years.
Yes, Toronto General is an incredible ILD facility! Continue with your positive attitude, that is important.
Take care,
Char.
Dianne Bain
Great article, and yes I agree. I have just started taking Ofev yesterday. I'm 69 and have a lot of living to do yet! I was diagnosed in April but I know I've had the symptoms for a yr and a half before that. Knowing that Ofev may only help about 40% of people taking it, I think it still offers some hope in getting 1 1/2 to 3 more yrs of life. I'll take it. Thank you for all your work in this great support group! I've learned a lot.
Charlene Marshall
You're most welcome Dianne, it is an honour to be able to write these columns that help my fellow IPF patients. Hang in there - I've found the transition onto OFEV tough, but it does get easier. Feel free to join our forums if you want to connect with other patients, ask questions or get more information. We'd love to have you:http://pulmonaryfibrosisnews.com/forums/
Charlene
Hans Fink
Thanks Charlene for a great article.
Personally, I embrace my IPF situation as a change in life style to be enjoyed within the limitation of this dis-ease.
I neither begrudge nor welcome the limitations that IPF imposes on my life. It is, what it is.
At the same time it gives me hope that the tremendous amount of research & trials happening will some day soon offer us some form of "Cure".
All the best to you for 2022 & stay positive.
Sincerely
Hans
Charlene Marshall
All the best to you as well, Hans! It's so nice to be able to connect here; thank you for reading my columns, reaching out via the comments and adding your insights. I agree with you: "it is what it is" and I think we have a lot of hope for a better treatment or cure of this hideous disease on the horizon.
Charlene.
Constance Hobson
Diagnosed four years ago at age 87. On oxygen 24/7. No medication.
Enjoy the articles. Helpful and informative.
Constance
Charlene Marshall
So glad to hear this Constance, thank you for your kind words! Happy New Year to you.
Char.
Charlene Marshall
Hi Yvvonne,
Thanks for reading my columns and reaching out via the comments. I wish there were more globally available options for this medication too, with a cost that is realistic to patients. I'm sorry to hear of the unattainable cost, it's so unfair. Stay well and wishing you all the best for 2022.
Deborah Laffitte
Great description of this horrible disease! Thank you for sharing
Charlene Marshall
Thank you for reading Deborah!
Judith Strauss
Thank you for sharing your IPF experience with us. As painful as it is to read, it makes me and other IPF patients feel less alone. My wish for you, for myself, for all those other IPF patients is a year where we have good health and find it easier to take a deep breath. Stay safe, stay well, and may the New Year be one of joy. Judi
Charlene Marshall
Hi Judith,
Thank you so much for reading my columns and reaching out via the comments. I wish the same for you in this upcoming year... maybe it be a better one for all of us. Take care and stay safe,
Charlene.
Clive Lugmayer
somber reading...
mine would be:
1. Hideous
2. Draining
3. Persistent
4. Crushing
I sit back reading the articles and generally don't comment, but you, as I said, hit this one one the nose. Diagnosed in 2017 I have learned to live with this curse with all the meds, treatments (sic) and slick exotic stuff out there. God bless you and your family and everyone else for this new and hopeful year.
Charlene Marshall
Hi Clive,
So nice to hear from you, as always - Happy New Year!
Your word selections sadly resonate with me also ... thanks for sharing how you'd describe this disease.
Take care and all the best for 2022.
Charlene.
Jofac O'Handlin
Hi Charlene,
All the adjectives you use are certainly applicable.
I have occasionally described it as a sort of arthritis of the lungs. People are familiar seeing knarled arthritic inflamed fingers, or knees, generally in the elderly. The inflammation, the bodies attempt at a repair, only worsens the condition. Hence, I guess, anti-inflammatory medications.
I will conclude:- We have been amazed at the speed that the treatments for Covid were invented, developed, put tnrogh accelerated trials, and made available to the masses.
We watch and wait, and wait, and wait.
IPF simplisticaly might be described as our bodies trying to make a repair that would be better not doing so.
I once described our problem as having a nail in your shoe. Every time you made a step it reminds you. You could stop walking, but we cannot take a break from breathing!
Of course one needs to be old enough to remember leather soles shoes and nails holding them together.
I look out at the beautiful, beautiful blue sky, an amazinly warm midwinter day in the usually wet Isle of Man! I will get back to installing my photo voltaic solar panels, as you can guess .... very slowly!
Perhaps 2022 will see our mirical.
In a few weeks I will make 80, I did not expect too.
My heart goes out to you, and all fellow sufferers in our group.
In the meantime we wait.
Perhaps '22 will be our year.
All my good wishes to you al friends in the group.
Kind regards,
Joe
Charlene Marshall
Hi Joe,
Thank you for reading and sharing your thoughts with us! As always, it's lovely to hear from you. Happy New Year - I am wish you wishing that this year is one for all of us. I have a lot of hope stemming from the research that has gone into COVID and lung diseases as you say, and pray that some treatment for IPF emerges as a result of this increased understanding. Like you, my description of IPF is similar.... I often describe it not as arthritis but rather as an "itch" that needs to be scratched in our lungs, and the cough is the scratch. Helps people get a bit of a sense of urgency of our need to cough...
Best of luck installing your panels and happy-almost birthday!
Kind regards
Char.
Kumar Tharmalingam
I sleep with an oxygen concentrator and that helps during the day when I don’t use it. My cough spasms remind me to put the tube back in my nose. I can only survive about 4 hours before I have to get back to it.
Charlene Marshall
Hi Kumar,
Thanks for sharing your experiences with us, though so sorry you're dealing with an increased need for oxygen. This disease is so tough -- hang in there!
Char.
Rich Martin
Thanks Charlene. Really appreciate all you do. And the words you used are right on, have learned a lot from you and your readers writing. Don’t stop preserving. You are an inspiration to all of us. Happy New Year
Charlene Marshall
Thank you for the kind words Rich! Such a pleasure to be able to write, and share my experiences with others who might benefit. We're in this together.
Take care,
Charlene.
Donna Doyle
I am finding that I have to think about even getting up for a cup of coffee such a chore that I tend to forget about. Is there any secrets to conserving energy. I am in year 4 of this horrible condition. Thank you for your news letter.
Donna Doyle
Charlene Marshall
Hi Donna,
Thanks for reading and sharing your thoughts with us! Preserving energy is really hard as IPF progresses, and I often find myself thinking about what I want to do and subsequently, what I can accept not doing. Have you ever heard of the "Spoon Theory"? Google it when you can ,it really helps quantify how to use your energy and is a visual I often think of when I am tired and wanting to preserve my energy but need to get things done. Another strategy is asking for help whenever possible, but I know that isn't easy. I find I am most energetic in the morning so I prioritize getting important tasks done then. Not sure if those recommendations help?
Take care,
Char.
Will Willis
Thanks for writing so many wonderful articles. I come from a world of self trained, self taught mostly alone, tough guys, however this disease has changed my outlook on life. Since given a life sentence I see life through different eyes. My favorite expression has always been "I can do anything". I've never liked saying the word "cant" but am suddenly faced with I really cant. No tears here, but WOW life changing. I've tested for transplant and at the end opted not to. I'm happy with my life, it's been and still is great. Your article on finding words to describe it leave me with "wow what a journey". Thankyou.
Charlene Marshall
Hi Will,
Thank you so much for reading my column and reaching out via the comments - what a powerful reply you wrote, thank you! The realization of the gravity isn't easy to accept, so I applaud you for shifting your thinking to focus on being happy with your life despite "can't". Kudos to you, thanks for inspiring! I really appreciate your kind words.
Char.
Denise Stogdill
Charlene, your 4 words to describe this debilitating disease are on point! I could probably come up with a few that could not be published?! I’m finding that other conditions like my Gerd are becoming worse and I don’t understand why. It’s frustrating when you’re eating right and your gerd is still acting up. But I found a GI doctor that I’ll be going to soon. Frustrating is a big word for me. I try really hard not to give in to the limitations but it seems the more I try the more complicated things get. I depend on oxygen for exertion. In the beginning my portable didn’t feel to heavy but now it feels like it weighs three times more than it did. I was looking at local beach houses because the beach has always been my favorite place! I don’t know if it still will be. I look at the stairs I have to climb on the beach houses and wonder, will I make it up the stairs? Should I just squash the trip? And then I think, oh heck, you have to try it. I try very hard to not allow this disease make me become a woe is me person. It’s just never been me! But it’s the hardest thing I have had to endure. Let’s hope 2022 is the year that a cure is found! Thank you for your thoughts and your comments. Thanks for giving us a platform where we can feel understood and let our hair down no matter how we feel! Happy 2022 everyone!
Charlene Marshall
Hi Denise,
Thanks so much for reading my columns and as always, for your kind words. It's lovely to hear from you - Happy New Year! Your image of a beach house is just beautiful, I do hope you consider it and as you say "give it a try". It's hard not to be woe-is-me when this disease takes so much from us, but also important for our coping to keep trying... kudos to you! I actually found my breathing better on the coast and near the ocean! Call me crazy, and maybe it was a psychological thing, but I felt better than I did when I wasn't near the ocean... I hope it's the same for you. Goodluck with your GI doctor, I really hope he/she is able to give some answers for you regarding the GERD. That's awful!
Take good care and thanks again for writing,
Char.
Robert Tih
Hi Charlene,
Thank you for all you have done for us IPFers. You are an inspiration to us all.
I was diagnosed with IPF in the spring of 2012 and I was stable for about eight years until January 2020. I led a pretty normal life during those eight years. No medication or oxygen.
My annual pulmonary function test and six minute walk test done in January 2020 showed I had declined by about seven percent from my 2019 tests.
My January 2021 tests showed I had not changed from my January 2020 tests. My latest tests, done this week show I have deteriorated another seven percent. In other words, I have declined about 14 percent in the last two years. My pulmonologist recommends I should now go on OFEV.
I have read of horror stories about OFEV side effects, as well as patients who have tolerated it reasonably well. As far as I can determine, about 50 percent of patients can tolerate the side effects. Good, solid reliable information is hard to come by.
Any information you or other forum members can share will be greatly appreciated.
May I wish you and other members Good luck and good health in 2022.
Sincerely, Robert
Charlene Marshall
Hi Robert,
Thanks for reading my columns and reaching out via the comments. It's such a pleasure to be able to write for fellow IPF'ers and hope my words resonate with others.... thanks for your kind words. Wow, I'm so glad to hear of your stability over 8 years, that is wonderful and I know it's likely hard to accept a deterioration in your lung function. Even though I sometimes expect it, it's never easy to fully accept a decline.
Regarding OFEV, its certainly a personal choice but I was grateful to go on it after a few adjustments to the dose, time of day I took it, and what I took it with due to unpleasant GI side effects. Once that got settled, I have to admit I think it has helped me. There is a lot of information on OFEV on the PF News forums, check it out: http://pulmonaryfibrosisnews.com/forums/forums/forum/ofev-nintedanib/ ... I hope this information is helpful!
Wishing you all the best in 2022 - may this be an excellent year for all of us.
Take care,
Charlene.
Randall Thornton
Good morning Charlene. This is an interesting article and nice for everyone join in to give their thoughts. 1st, so glad you got this group together so we can all learn from each other. I knew nothing about IPF outside of the facts t he doctors told me I had it almost 2 years ago now. I didn't really know what it was except that there was no cure. After reading all the post from our group, I got an understanding and some lessons. At first, I was real down trodden and didn't know what to do. As the past year developed, I rethought my life and decided I would start looking forward to things I wanted to do instead of backwards I think I cannot do anymore. So, I am going from there. I had my resent lung test last month and regretable, not good numbers. I am showing 37% which is kind of low. So I figure I'll keep pushing and go from there.
I wish you and the group a great New Year and here's to the new drugs that have been developed over this past year. Hope they get approved and out on the market to give us all a helping hand.
Charlene Marshall
Hi Randall,
Thanks so much for reading my columns and reaching out via the comments. It's lovely to hear from you - Happy New Year! I am so glad to hear the forums and these posts are helpful to you in better understanding IPF, I know it can be a lot to digest and I've also learned a lot from the others who are willing to share. Good approach, albeit hard, to look forward vs backwards... kudos to you, my friend. Take care and keep on keeping on!
Take good care,
Char.
Ed Cocca
Hi Charlene,
I am the newbie on the forum -- recently diagnosed after seven months of CT's and other tests. Before reading other's experiences on this site I thought my medical support was exhibiting an unwillingness to be honest with me. I now know this malady was driving them to do a thorough evaluation for my sake. I am 82 years young trying to adjust to my new normal. We oldies don't like change you know but we have so much life experience to fallback on during crisis. I will adjust and do my best to go forward in the time I have left. Your forum ( I read ever submission by the group and your responses in one sitting) developed my knowledge of IPF; its challenges and how others in the group have responded to their life changes. Thank you so much all of you. Please continue to share and help us all.
Charlene Marshall
Hi Ed,
Thank you so much for reading my columns and reaching out via the comments. Sorry to hear of your recent diagnosis, but glad to hear you've found conversation on the forum helpful. Speaking with others who have endured the same experience(s) is truly invaluable, I'm glad you've found us. Keep up the great attitude and attempting to adjust, it will pay off. Thanks again for your kind words.
Take care,
Char.
Ginger Hopkins
Another newbie here…63 years old and diagnosed in January 2022. In hindsight, I realize I was having symptoms for a couple years, but things got pretty bad in July so was sent to a pulmonologist and, like everyone else here, went through months of testing before getting a diagnosis. It helps to give it a name. All the information is a bit overwhelming right now plus this is so new to me that it’s hard to have any indication of what the journey will be like for me. Articles like this are especially helpful, especially with all the folks adding comments. Thank you to all you brave survivors of this willing to share with us newbies. Despite the challenges, you give me hope that I can be strong through this, too, and appreciate whatever life has to offer me along the way.
Charlene Marshall
Thanks for your kind words, Ginger! I appreciate you sharing your story and experience with us; it will inevitably help other readers feel like overwhelmed. Take good care,
Char.
William Garrison
Charlene, I’ve just discovered your “column “ and as a fellow IPF patient appreciate the opportunity to learn from others experience——I was diagnosed a couple of years ago and have felt quite alone with this atrocious malady—so thanks to you, and all your respondents for giving me the support of a knowledgeable community. I will be reading!
Bill Garrison
Charlene Marshall
Hi Bill,
Thanks so much for your kind words on my column and for reaching out via the comments. I'm glad you're finding it helpful, and I completely agree; learning from others' experience is invaluable! You may also want to check our our PF News forums: http://pulmonaryfibrosisnews.com/forums/ ... lots of really helpful and supportive people on there, including lots of patients. Take care!
Char.
Tonya Worley
Daunting complex oppressive uncertain, I tried not to overthink it and so I quickly shot words off the top of my head that I feel when I am thinking about having PF. Out of all those words, I find the uncertainty is the worst. It's as if my life is "in limbo" or "on hold". It can be terribly daunting because it's like being stuck in a situation that has no remedy and/or definitive answer and so you have no expectations and you stay unsure of what's to happen or when it will happen etc...
Jim Couch
Totally agree with your synopsis. Might add loneliness. A decease which plays on the mind.
Deb Higdon
I was diagnosed with IPF a year ago but started with symptoms February 2019. I had a very bad case of Covid and have not breathed well since. I have also had to start taking a beta blocker. I have not really believed the diagnosis to be correct, but I was diagnosed and am receiving care at Houston Methodist Hospital ILD Clinic. However, today it has hit me hard. Here are my 4 words:
Depressing
Exhausted
Sad
Angry
I just want it to go away. I want to be me.