Forum Replies Created
August 18, 2022 at 10:36 pm #32919
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 is not worth the very modest benefit they have shown in all trials.
However, here is some good news. My GP is Asian (Vietnam) and has a phd in nuclear physics as well as an MD and Board Certified Internist. He has repeatedly recommended a set of simple Chinese based breathing exercises. His demonstration of the exercises looked so basic as to be unscientific. THEN about a year ago on this Pulmonary Fibrosis News website, I saw an article referencing a Shanghai double blind & peer reviewed study of these very exercises published in a credible medical journal. The results of the study indicated that the benefits of these free, easy, and ancient Chinese exercises provide very similar benefits as the outrageously expensive drugs ($10 to 15 thousand USD per month) approved by the US FDA. These exercises are simple and free. Wish I had listened to my GP the first time and started them then. At my advanced disease stage they are difficult to perform. But you are at the beginning of your tentative diagnosis, they should be helpful to either COPD or IPF/PH. Suggest you look up that study on this website and show it to your own doctor for his advice.
Maybe some of our fellow patients in this forum can remember the study and article and give you a more direct reference.
All my best wishes to you for a good outcome and a successful battle with this rare disease.
Jim Knox, Central Texas
July 28, 2022 at 8:18 pm #32769
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 provided you pay attention to the various input/output loads. Either of the above will enable you to use your vehicle in an emergency to provide enough O2 to be functional, whether sitting inside the vehicle (at idle or traveling) or running the AC lines into the house with the vehicle idleing outside. CAUTION: regarding carbon monoxide awareness and control and safety precautions.
I have personally experienced long-term power outages (up to 10 hours) at my ranch in Central Texas, at least two times; both at night and both unannounced. That is no time to start figuring out what to do. So be sure you have the plan, the equipment, and self training to respond quickly and with minimum physical effort. My own plan starts with a fully charged battery operated Inogen G5 at bedside, so I can get O2 started with minimun muscle activity and enough O2 to maintain good cognition to plan on dealing with the situation at hand.
Good luck to all.
Jim Knox, (near Bryan/College Station, Texas)
July 6, 2022 at 10:00 pm #32540
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)% decline in the 6 min walk. With concurrence of my doc, did not take further VAX.
Because of the COVID threat, I started taking an immune support collection of vitamins and supplements (Vit C, B6, B12, etc,) including Zinc. Since spring of 2020 I have taken daily doses of the above and the Zinc component is 50mg of Zinc Gluconate. I read somewhere that Zinc Oxide is poorly absorbed and a cheap version of Zinc. So be aware of the actual type of Zinc taken. Bottom line, as an 84 y/o male weighing around 140 lbs, I have experienced no adverse effects of the 50mg dose of Zinc daily for two years now. Unfortunately, I have detected no special benefit to my IPF/PH from the Zinc either. I am now on Oxygen 8L 24/7 and the IPF has now progressed into Pulmonary Hypertension, which as caused a much faster decline.
I am only reporting these experiences and apparent personal results for others, since I appear to be a fairly “old timer user” of Zinc at 50 mg/d for several years and am reading a lot of questions by “new comers” regarding dosage and efficacy of Zinc. I am continuing the vitamin regimen for anti- COVID purposes, ever-hopeful that it will help with the IPF also.
My best to Charlene and all our fellow suffers,
November 11, 2021 at 6:57 pm #30435
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.
December 14, 2021 at 9:14 pm #30611
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 tests). Was put in the hospital in July for a week of tests including right and left heart caths. Diagnosis was IPF with severe Pulmonary hypertension PAH, a heart desease caused by strain on heart caused by IPF.
In retrospect, I believe my PAH and the sudden decline in 6MWtest were related. With your similar sudden progression and weakness, I would suspect the possibility of the onset of PAH and seek professional help ASAP. I have progresses at a fairly rapid rate and am now on 6L O2 24/7 and am essentially housebound. Just sharing my experience for whatever it may be worth. I wish you the best.