The Top 4 Words I Use to Describe IPF

Thankyou Charlene for your great article describing our disease. Don

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

Would stem cells cure idiopathic pulmonary Fibrosis eventually? Its my friend who has this, not me.

I think your 4 words describe the symptoms perfectly. I would add, it sucks.

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

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.

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

Diagnosed four years ago at age 87. On oxygen 24/7. No medication.
Enjoy the articles. Helpful and informative.
Constance

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.

Great description of this horrible disease! Thank you for sharing

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

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.

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

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.

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

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

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, 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!

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

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.

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.

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.

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.

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.

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.

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.

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

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.

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...

Totally agree with your synopsis. Might add loneliness. A decease which plays on the mind.

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.