Karl

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 difficulty…[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 cough…[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 message…[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 primary…[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 of…[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 see…[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 by…[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 the…[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 needing…[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, the…[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 stage”.…[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 something…[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 advanced…[Read more]