jim-nox
Forum Replies Created
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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 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
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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)
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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,
Jim Knox
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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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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, nurses and home health professionals to keep you comfortable (not drugged out) and peaceful as “nature takes it course”. They also have a complete handle on pronouncing death & causation, and paperwork for a seamless handoff to the Funeral Director of your choice, who “takes it from there”. I just met with a funeral director yesterday and got my services chosen and planned so my loved ones are not suddenly confronted with these decisions in a time of grief. Since I live in two places, a home in Houston, Texas and a ranch 150 miles away. I will now focus on identifying a Hospice organization operating in both location. My situation is a bit complicated, but I know I feel better knowing that all is prepared, planned, and decided whenever the time comes. I know my family feels the same. Now I can focus on enjoying what is left of life and in taking care of myself and family. It is a bridge a bit difficult to cross, but cross it we ultimately must.
Good luck and best wishes. Jim Nox
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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 have not used them regularly as they did not seem to help more than Ventolyn and are outrageously expensive (a whole ‘nuther subject about the use of carefully crafted/lobbyist empowered tools of USA big pharma to re-patent old drugs in combination so as to get exclusive marketing rights which leads IMHOP to price gouging for minimally efficacious results.)
Hope you are doing well in our common battle against IPF. Unfortunately my IPF has progressed into PAH, a much more serious condition. Nevertheless, I am “whistling through the graveyard” and staying positive.
Best wishes,
Jimnox
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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 little success in taming the little critter. I frequently leave it around my neck, just pull it out of my nose and wear it like a necklace. It has no choice but to behave. At night, at home, I loop it over my headboard.
Best,
Jimnox
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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 procedure twice early in my course of IPF (about 2 years ago). Although I experienced no adverse effects, I experienced no noticable benefit or improvement. After the second time, about 6 months apart. I declined to continue, as it cost several thousand each two day treatment,was not covered by insurance/medicare, and appeared to me to be non-efficacious, at least in my case. Just my ancedotal experience.
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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 days later, I noticed that I seemed to be needing O2 in situations not needed before. I performed a 6 minute walk test (and have regularly performed the test since). It is clear that I suffered about a 15% to 20% loss of pulmonary function beginning shortly after the 1st vaccine shot. Called my pulmonologist and we agreed that the vaccination may have been the cause and I should not take the second shot. All 6MWTs since have remained at the lower rate without any measurable recovery. There is no certainty that there is a relation between the vaccination and the sudden decline, but I wanted to give everyone a “head’s up” about my experience. At age 83, I would probably take the first shot again, but not the second, as my Doc said “Covid would kill me for sure” if I caught it. So, I got some immunity, maybe at a cost of some additional inflamation/scarring and a 15% loss of pulmonary function. Hope to do a real PFT in the next couple of months to better evaluate the decline.
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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 that any narrowed bronchial tree would restrict both volumetric and DCLA (diffusion) measurements in a PFT. One responder mentioned it should not be necessary for her as her pft volumetric numbers did not improve with the administration of abuterol during testing. Maybe that could be true if there would no allergens present at or about the time of her pft. Best of luck and will look for you continued info on this test. Jim Knox -
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 from the treatment, although “hope springs eternal”. The treatment itself was quick, simple, pain-free, and with friendly folks in a clinical setting. Of course, it is fairly expensive considering the lack of objective and rigorous published measurement of benefit/detriment. Only patient subjective testimonials based on non-rigorous survey’s. I am now eligible for a repeat or “booster” treatment at a discounted price but will probably pass. I cannot blame or warn anyone dealing with this nasty disease for giving it a try (if you can afford it), but would not personally mortgage my house or borrow money in order to do so.
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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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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 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.
Jim Knox
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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 diagnosis/prognosis with only one of many tests, scans, and other diagnostic tools showing any abnormality, leaves me a little suspicious that he/she was a bit anxious to get you onto hi-priced drugs OFEV/Esbrit. Unless you have had subsequent diagnostic tests to confirm IPF, I would suggest a second opinion.
The hi-res CTscan should have shown clear structural signs of the development and existence of IPF and all stethescope exams should have revealed sounds of IPF (crackles and velcro tearing sounds). I am not a doc, but have a fairly long history of suffering from and reading about this family of diseases. My history is similar to yours, many years of jogging, physical activity and otherwise good cardio/vascular exercise before my diagnostic exams which revealed all of the above.
I send best wishes that you have a good outcome.
jimnox
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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 Hypertension” which can quickly lead to heart failure. Nothing you could have done.
While your grief is understandable and normal, I urge you to “hang on and persevere” as the darkness will slowly lighten with the passage of time. Twenty years ago, I lost my teen-age bride of 44 years. The pain was intense – – like a bear sitting on my chest, or my heart being replaced with a ladle of hot molten lead. It took a year for the pain to become bearable and the crying jags to abate, and another two years for me to begin to emerge from that lonely-lost feeling and resume a “normal” life.
Stay strong and wait for the storm clouds to clear. Or better still, join a “grief group” of those who recently lost loved ones. You can find these groups through funeral homes, churches and therapists. Maybe hospital social workers also.
All my best wishes and condolences,
Jimnox
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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 approximately 15% from my pre vaccine tests. That loss has remained steady since then. I consulted with my pulmonoligst about my suspicions that the covid shot (although I was otherwise symptom free) had further damaged my lungs and produced additional scarring and that I was reluctant to risk further damage/decline by taking the second shot. He agreed. He advised that the first shot was probably worth the damage since Covid itself would kill me for sure. But the second shot might not give enough additional protection as to be worth the risk of further damage. I suggest you take this up with your Pulmonologist before actually taking the second shot. Also, if you have any routing testing or other metrics, I suggest that you get an update to determine how much damage/decline has occurred and to get a new baseline for future comparasion.
Good Luck.
Jimnox
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Hi @bob-osborne
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 plugged in to wall power and simultaneously charges the battery that is inserted. All things considered, I find it to be a pretty darned marvelous and friendly device although I initially hated the idea of wearing it in public. Now it is my best friend and great enabler as I live and do light work in my Texas ranch life. Amazing how we adapt.
Good luck…….
Jimnox
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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 content of EGCG.
After some 6 months of fairly rigorous adherence to the regimen described in the study, I did not notice any improvement. In fact, I experienced continued decline in all perameters (nearly continuous Sat rate measurements, ranch and house work capability, etc.,) except my regular 6 min walk tests, which have stayed in the same rather broad range between 340m and 380m. My PFTs show a slow decline in diffusion.
Bottom line, over a period of about 9 months, the first 6 of which I strictly adhered to the regimen, I have noticed no improvement and have experienced increasing disability and increasing need for O2 during any activity other than sitting still. My general conclusion is that, for my particular body and situation, the Green Tea Extract experiment was not productive or noticeably helpful and I have abandoned the regimen, except for occasional capsules of extract, and brewed green tea on occasional, non-rigorous basis. This is my anecdotal experience report. Wish it were a better outcome.
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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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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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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 O2 Sat pulse/oximeter readings and perceived myself as in serious decline. He looked again at the PFT report then said: “I take it all back”, look at the diffusing numbers – – they have declined 60% in a year. So he perscribed OFEV. (which I have declined to take for various reasons.
I am experimenting with Metformin for the moment. We’ll see. Fingers crossed.