Hi Martha,

Sorry to hear of your tentative diagnosis. FYI I am an 85Y/O male, diagnosed with IPF/PH in 2015. During the intervening years I have experienced a gradual decline and am presently on O2 24/7 at 9l. I have investigated the journal articles on the FDA approved drugs OFEV & Esbrit, and made the personal judgement that, for me, their… Read more

In addition to the suggestions of Millie, I have found that most modern automobiles/pickups have electrical outlets that support Inogen type concentrators via accessory plug-ins to cigar lighter recepticles. Also, you can install electrical inverters that convert DC to AC household current and use them to power up larger home… Read more

I was diagnosed in 2015. Being a data hog I have kept pretty close track of progression (6 min walk test almost weekly here at the ranch and PFT’s with pulmonologist when I visit twice yearly. Over that period initial decline was slow and fairly gradual until I took the first Moderna Covid Vax Jan 5th, 2020, and noticed a sudden 15 (or… Read more

Hi George,

Congratulations on achieving 87 Y/O. I am 84 and was diagnosed with IPF about 7 years ago. Sailed along doing pretty good with slow moderate decline on no meds until last January 21. In the spring I noticed an increasing decline rate. Then in about May I noticed  an unmistakable rapid decline. ( all measured by regular 6min… Read more

Have been using Ventolin (abuterol) inhaler for over 3 years, morning and night. For about 2 hours after use, I seem to cough up lots more phlegm than if not used. Seems to help clear the lungs and maybe ease the breathing. Main thing is to get that gooey stuff OUT.

Best,

Jimnox

Howdy Mr. Kahn,

Another Texan here (Houston and Bryan-College station areas). I am 84y/o with a now very advanced case of IPF, which has morphed into a heart condition known is PH (pulmonary hypertension) the later of which I expect to be the immediate cause of my demise.

Seeing your note about your initial pulmonologist … Read more

Thank you Mr. Adams, for posing the question(s) that we all must have. I have found that doctors do not want to deal with questions about what to expect at “the end”. Understandable, as their focus is on treating and curing.

My investigations have led me to decide that the best answers lie in Hospice end of life care. They have the… Read more

Hi Charlene,

Good to hear from you again. Since my diagnosis of IPF in 2018, I have used Ventolin (two puffs in morning, two before bed, and also as needed). I find it VERY helpful to loosen and expectorate a lot of bronchial junk and clear up  airways. Was also perscribed Symbicort and several other “combo” inhalers containing steriods,… Read more

I agree the canula has a mind of its own and is hell-bent to land on the floor, especially in public places and especially in restrooms.  Actually, it is quite amazing; as if it is a companion sent to entertain, tempt, and bedevil you in exchange for its life enhancing delivery. I look forward to the suggestions of others as I have… Read more

Nigel,

Regarding the UK treatment of removing, centrifuging, and then reinjecting the concentrated macrophanges/white plasma.

This sounds indentical to the proceedure being done for years by the Lung Health Institute of Tampa FL and Dallas Tx. It is a two day deal. Each day they do the extraction/spin/re-inject procedure.

I underwent… Read more

Hi Kathryn,

I can feel your pain and self-blame through your writing. Your love and care for your fiance’ are apparent. I can imagine that it is worse because your marriage never got to “be”. Not your fault about his sudden decline. It can happen with this disease. It probably progressed rapidly to a much more deadly disease called… Read more

Hi Bernard. I do regular 6 Minute Walk Tests in an attempt to get/keep an objective handle on my status. About 5 days after getting the 1st Moderna Covid vaccine shot in early January, I noticed an increased shortness of breath and more frequent need for oxygen. Sure enough, when I performed the regular 6 min walk test, I discovered a loss… Read more

Hi Bob,

For whatever it is worth, I have been using the Inogen POC G5 for about a year. Bought it with 2 regular and 1 longer term batteries. Have been pretty well satisfied and use it periodically frequently (lately nearly constantly while moving) and all night at a minimum 1ltr setting in case of breath issues when dreaming. It runs all… Read more

To all IPF patients who have recently experienced sudden and unexplained loss of pulmonary function——

I do regular 6 minute walk tests to have an objective measure of my pulmonary sufficiency without going in for a PFT. I had the first Moderna COVID 19 vaccination about Jan 11 2021 and experienced no detectable  adverse reactions. About… Read more

Hello Charlene, Ron, and others inquiring about green tea extract. I began taking the Green Tea Extract in the approximate dosages used in the study published in the NEJM, since the study was first published in the Pulmonary Fibrosis News. Have used several different brands, but not the Teavigo brand used in the study. All brands had… Read more

Congratulations Gill,

That is indeed a special story. May you enjoy many years of getting acquainted with your newfound daughter. Must be a great feeling.

Jim Knox

Same best wishes back to you, Charlene. It has been a year of struggle for everyone, I suspect. Do appreciate your upbeat messages throughout the year and wish you all the best for 2021. May we all be blessed by each breath we take.

Hang in there and keep smiling.

Jim Knox,

Texas Rancher

Hi Charlene,
Although I have never heard of, or been offered, this test for allergy induced asthma, it makes sense to try it if it is non-invasive and no other “downsides”. Seems to me that any allergy induced restrictions/narrowing of the bronchial airways would aggravate the decline in blood O2 SAT rates of fibrosis or COPD patients. Seems to… Read more

I tried the therapy in August. One area in your article is, I think, in error; The Lung Health Institute avoids use of the term “stem cell therapy”, as this term would bring them under more stringent Federal review. Instead, they use such terms as “Autolagous cell therapy” or similar. As of yet, I have not experienced any identifiable… Read more

Suggest you do away with the background music and other sounds so that the message is more understandable. The background “music” and other noises are distracting and off-putting thereby inhibiting the clarity of the message.

I had a similar experience. For several years after diagnosis, I had periodic PFT’s. My volumetric (FV & FV1) numbers were always pretty good. On a subsequent visit, my pulmonologist noted my good volume numbers and said I was doing well and could expect a longer survival. I asked if he was sure as I had been experiencing continual decline in… Read more