Jane McBride replied to the topic Leaving the house on 4LPM oxygen? in the forum Diagnosis Information and General Questions 4 months, 2 weeks ago
Ihave been using the Inogen portables for several years. I started at 3. I am now using the Inogen that goes up to 6. I was unaware of the discrepa0ncies mention in these replies because the Inogens seem to work for me. I have car chargers in all of our cars and take an extra battery with me now for occasions like this afternoon when my…[Read more]
Jane McBride replied to the topic Fluctuating Body Temperatures – Cold & Hot in the forum Using Our Forums 2 years, 1 month ago
This was of great interest. I am on Ofev and since it seems to be stabilizing the IPF at the moment I am just trying to find ways to deal with the side effects comfortably. There seem to be any number of us dealing with the temperature range so I think of it as a side effect without official medical affirmation.
Almost every evening, I have been…[Read more]
Jane McBride replied to the topic Tips to Combat the Effects of the Cold Dry Winter Air in the forum Living with Pulmonary Fibrosis: 50+ 3 years, 4 months ago
Thanks for this subject, Mark. I am facing a very cold winter here in Illinois and would like some info on how to best handle my Inogen 3. The hose and canula get very stiff as well. Wrapping the tubing up under scarves etc. helps but was hoping someone might have a suggestion as to acquiring tubing that gets hard and doesn’t start pulling away…[Read more]
Jane McBride replied to the topic Post-meal fatigue in the forum Living with Pulmonary Fibrosis: 50+ 3 years, 4 months ago
Hi Fred and Wendy,
I find smaller meals helps with fatigue as well. The only draw back is balancing the meals and the Ofev dosage, which requires a “full meal” according to the instructions (has a similar problem with previous meds). Found I can balance both smaller meals and stave off some of the side effects of Ofev at the same time but it…[Read more]
Jane McBride replied to the topic What you need to know about Ofev in the forum Ofev (Nintedanib) 3 years, 8 months ago
Like you Ofev seems to have stabilized the progression of my IPF, lovely to hear. However, I too had difficulty with the intestinal side effects on the 300mg a day. Not as badly as you but badly enough to plan my life around whether or not I could plan to go out with friends etc. My doctor changed the dosage to 200 mg…[Read more]
Jane McBride replied to the topic The Frequency of Changing Your Nasal Cannula in the forum Living with Pulmonary Fibrosis: 50+ 3 years, 9 months ago
Thanks for the tip of wearing the cannula at the back. It has really given my ears a rest and doesn’t dangle down the front getting in the way of everything. I wear it 24/7 and this suggestion was really a relief. Plan to rig some kind of easy belt to help with walking around doing housework, etc.
Am going to experiment with the cannula on my I…[Read more]
Jane McBride posted an update 3 years, 11 months ago
This evening is the first time I have been aware of lazer therapy for IPF. May I please have some more information?
Jane McBride replied to the topic Pulmonary Rehab May Improve Exercise Capacity and Quality of Life in IPF Patients in the forum Flash Briefings & Podcasts 3 years, 11 months ago
Would appreciate recommendations for Pulmonary Rehab in Northern Illinois.
Jane McBride posted a new activity comment 3 years, 11 months ago
Thank you Charlene.
I have just moved to northern Illinois. Can anyone recommend a good pulmanologist with IPF interests?
Jane McBride became a registered member 3 years, 11 months ago
Hi @janenmcbride, so glad you’re part of our forums – welcome! There is lots of information on laser therapy, for informational purposes only (members should be sure to discuss this option with their providers or make an informed decision if laser therapy is right for them) on three threads on our site. You can find them here:…[Read more]