It’s too bad the 3 to 5 year info is online. It may be true for some, but certainly not for all. Your reaction is common. I was given 3 years back in 2018. I happened to have had an MRI in 2008 for another reason that showed scarring in the lower lobes of both of my lungs. I was put on OFEV but could tolerate it even a reduced dosage. I got…

Read more

Hi Robert. Your situation may be like mine, which I’ll talk about later. My 2 cents: (1) You deserve a top IPF MD. Fire your Pomologist. Seek an MD whose primary practice is treating IPF as criteria #1. (2) Confirm the diagnosis you were given that says you have IPF. Get a sound assessment, particularly if you are not having breathing… Read more

Hi Annette, If you are an active person and your breathing and dry cough is not preventing you from an active life like skiing, I would not jump too quickly into medicines for the relief of symptoms. I can attest to the fact that the side effects of OFEV can be severe and debilitating.
I was diagnosed with IPF in 2018 after a long severe… Read more

Hi Malcolm Mann, 81 yr old Karl here, diagnosed with “mild” IPF Aug 2018. CT scan for kidney stone in 2008 picked up lower lobes and showed some un-diagnosed scarring that appeared in 2018 CT scan that resulted in my IPF diagosis, therefore I’ve had IPF for 10+ years. Like you I’m very active. IPF is not really slowing me down — yet.

My… Read more

Hey @Charlene, I’m probably telling you what you already know, but if you want to add to your treadmill exercise, I suggest any equipment that works on the muscle group that builds breathing as a primary objective; diaphragm, pectorals, back and chest. Working the entire body is great if you can do it because strengthening all of the… Read more

Diet and exercise. How many times do we hear that phrase as a disease prevention for all kinds of diseases, albeit imperfect. Regular walking is great. Walking and muscle building exercise is even better, including pursed lip and deep breathing exercises to build all the muscles that control breathing. Never too late to start, just don’t do nothing.

Fear is a common cause of poor decision-making regarding exercise. But it can be mitigated by joining an exercise facility with certified trainers who are also certified in pulmonary diseases.

Hi Charlene, I always feel so badly for your situation. As one with early stage IPF and not even on oxygen, I can only attempt to imagine what it is like when exercise in any form is difficult, even terrifying.

I am not a good practitioner of what I preach but I am dedicated to improving: Diet and exercise are very effective methods… Read more

I should have mentioned, an oximeter is used throughout the 6M walk is for obvious reasons. The 6M walk is also used for Cardio patients but in their case a heart monitoring device is used throughout the test in place of an oximeter. If you go to a pulmonary rehab facility you will probably see more cardio patients than IPF’rs. And you will… Read more

Hi Charlene, Thanks for the response. It’s interesting that so many people mention treadmill when talking about the 6M test. I have been to 4 different places that conduct the test. All were medical facilities with certified technicians. One was a pulmonary rehab facility in a hospital. Two had treadmills as an option, not the only method. And… Read more

When I read some of the posts above I feel terrible for the authors. In fact it makes me boil over with rage. Some of the comments scream out medical incompetency! I’m a patient myself, not a doctor. I cannot help but post my feelings about what I have read above.

The 6 minute walk test is an important standardized test used in most places in… Read more

I had not seen this thread until today, 2/1/2019. Where have I been? This is interesting because if it’s truly effective for people in advanced stages of IPF, I wonder if it could “cure” my early stage situation.

To me a cure would mean no further progression since I do not yet have a serious condition. I’m 81, quite active, nowhere near… Read more

Hi Charlene, it occurs to me that my diagnosis started with the normal out of breath symptoms, a breathing function test, and a review of a CT scan of my lungs. But in addition to the lung CT scan, I had had a CT scan of my abdomen 8 years earlier for a kidney stone, The very lower part of my lungs showed up in that scan and guess what,… Read more

Hi Thom, You commented on my post above about how to handle the comments from people when you tell them you have IPF. Apparently you have just been diagnosed and have the same kinds of questions and feelings I had when I was first diagnosed 3 or 4 months ago. I’m 81 so my “normal” life expectancy is not huge. My diagnosis is “light, early… Read more

What scared me surely scares a lot of people, specifically reading that I have 3 to 5 years to live. I think publishing that kind of information without acknowledging that some people have had IPF for 17 years and are still going is of questionable value. Of course it does get your attention, and perhaps that motivates you to try to do… Read more

I believe guilt should not be in the vocabulary of anyone who becomes ill or incapacitated unless they are knowingly responsible for becoming that way. I once broke both arms necessitating my wife to become a care-giver for a while. I felt guilty because I broke them by doing something I should not have done and knew better. I’m not at an… Read more

Thanks Zach, That’s a reminder I had forgotten.

In my case all but the biopsy were performed.
I started with coughing, out of breath, and dizziness symptoms I had been ignoring for about two months that led me to my family doctor, a General Medicine Practitioner. She ordered a chest x-ray. The x-ray Pathologist reported “possible” interstitial issues in the lungs. The GP then ordered a CT… Read more

I shared this post directly on Kim’s article and decided to re-post it here. It works for me; Maybe it’ll work for someone else.

Years ago I learned an important lesson when I was diagnosed with bladder cancer. I was reluctant to blast the news out to the family and asked my wife to let me share the news on my own time.

That was not the fair… Read more

I have found that if I have a bout of Montezuma’s revenge, I simply don’t take the next Ofev dose and let my body return to its more normal behavior. This usually works for me but it might not work for everyone.

In my non-medical opinion, the value of quality of life by not taking the drug for 12 hours,even 24 hours, far exceeds the… Read more

Hi all, I was diagnosed with mild IPF 3 months ago. I am not on oxygen …. yet, and I get around quite well on my own. I’m 81, galloping toward 82, active, working at my third career. As I began reading about people who had IPF for many years I discovered one gentleman was diagnosed 17 years ago. This helped me overcome my initial… Read more