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jim nox replied to the topic Feeling desperate in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 months, 1 week ago
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 cost…[Read more]
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jim nox replied to the topic Handling Power Outages While Using Supplemental 02 in the forum Living with Pulmonary Fibrosis: 50+ 6 months ago
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 comcentrators…[Read more]
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jim nox replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 6 months, 3 weeks ago
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 so)%…[Read more]
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jim nox replied to the topic Inhaler Use for Pulmonary Fibrosis in the forum Diagnosis Information and General Questions 1 year, 1 month ago
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 walk…[Read more]
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jim nox replied to the topic Inhaler use in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago
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
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jim nox replied to the topic WEI Institute Natural Care of Chronic Lung Diseases in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago
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 severe…[Read more]
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jim nox replied to the topic End of Life in the forum Diagnosis Information and General Questions 1 year, 4 months ago
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 doctors,…[Read more]
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jim nox replied to the topic Inhaler Use for Pulmonary Fibrosis in the forum Diagnosis Information and General Questions 1 year, 4 months ago
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, but…[Read more]
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jim nox replied to the topic Concentrator nasal cannula storage in the forum Diagnosis Information and General Questions 1 year, 5 months ago
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 achieved…[Read more]
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jim nox replied to the topic Covid 19 Millions Suffer but is it a Blessing in Disguise for PF Patients ? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 5 months ago
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 this…[Read more]
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jim nox replied to the topic Shortness of breath and normal oxygen reading in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 7 months ago
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 “Pulmonary…[Read more]
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jim nox replied to the topic Progression of IPF in the forum Diagnosis Information and General Questions 1 year, 9 months ago
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 of…[Read more]
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jim nox replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 10 months ago
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 night…[Read more]
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jim nox replied to the topic Sudden deterioration in breathing in the forum Diagnosis Information and General Questions 1 year, 10 months ago
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 4…[Read more]
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jim nox replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 2 years ago
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 labeled…[Read more]
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jim nox replied to the topic Happy New Year & Best Wishes for 2021! in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years ago
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
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jim nox replied to the topic Happy New Year & Best Wishes for 2021! in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years ago
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
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jim nox replied to the topic Methacholine Testing in the forum Upcoming Medical Appointments: Q&As 3 years ago
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 me…[Read more] -
jim nox replied to the topic Stem Cell Therapy is Investigated by the Washington Post in the forum Diagnosis Information and General Questions 3 years, 1 month ago
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 benefit…[Read more]
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jim nox replied to the topic Study Says Blocking IL-11 Reverses Lung Scarring In Mice in the forum Flash Briefings & Podcasts 3 years, 2 months ago
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.
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