Rand O'Brien
Forum Replies Created
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I have found outside, the bright sunlight interfers with readings. Since the contraption works with a laser, there probably is light leakage, or even the finger is “lighter” and interferes. I tuck my hand under my coat or jacket to get the reading and it works fine.
Rand
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A couple years ago, MGH in Boston was “ranked” 4th in the nation.
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I forgot to mention in my longer Green Tea gig, that I’ve been on Ofev for a little over 4yrs. Had an allergic reaction to Esbriet after about 4 mos. No miracle cure here, but seems like it adds a governor to the IPF engine.
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Hi Folks,
Hope this won’t be too long, but wanted to share. I also started on Green Tea extract (GTE), 725mg, after reading the studies from NEJM and the Stanford studies. As is my proclivity, nothing happening at 1/day, then increased to 2/ day, then 4/day, at times 6/day. I’m not suggesting this for anyone, just reporting. Nothing happening but after a couple weeks at 4+/day. My O2 #’s were consistently 2-4% higher. I couldn’t figure it out, as I forgot about the GTE. Then remembered and something was keeping the #’s higher, regularly. As is my wont, I ran out and forgot to order the stuff and I noticed my numbers going down. Again, curious, I remembered I stopped the GTE. Ordered up a bottle and after a couple of weeks the #/s increased that 2-3%. I’ve have a couple more of the “forgets” and then the same results. In the past 6 mos. having a steeper glide path to the eventual landing (I was dxed in 8/2018) I had been off GTE again, as it seemed like it wouldn’t make difference. But I said “what the hey” and started again at 4/day. 2 wks in again the #’s increased. Hasn’t changed my need tank O2 out on the trails, but just feel better (mayber the caffeine?) and I’m just gonna keep going with it. No physical upsets of any kind. Just passin’ along my experience. It’s not a double-blind test, but something does change. I don’t think O2 #’s would be affected by placebo effect.
Rand O’Brien
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Folks,
I’m needing to get on O2 bottled for exertions, like walks in the woods, etc. I kept being frustrated with the over the shoulder gig with my Onigen5, as well as the neck wear & tear. After having the unit get too warm in a back pack, ordered a mesh backpack from Amazon, $16, and it works like a charm. Carrying it over the back is a lot better for da body. Now to get set up for bottled O2. Yikes!!
Rand
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Folks,
I was first on Esbriet, which was more expensive than Ofev. Medicare after $X (I don’t know what that is at present clicks into Catastrophic rates, which are much less. I recieved a grant from HealthWell, an organization that gives grants for catastrophic medical expenses. Remember the Icares of BI is a means-based system on income. With the grants, which were used for the initial phases of MedicareD and the catastrophic coverage, I was able to make it through on the Esbriet, until I had an allergic reaction. Ugh……. Someone many moons ago suggested that milk and Ofev don’t go together, I found that to be true. Fresh cheeses, milk, will cause upset. A little is okay and Lactic free products okay. Grew up on a farm in Iowa and a rabid cosumer of milk…..in the past. Probably all depends on one’s system.
Rand OB
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I would be worried if my PCP noted that IPF “could” be progressive, given all the literature out there. It is progressive, by all accounts I’ve seen. I didn’t catch where you live, but I’d get to a good BIG hospital for a full work-up. If near a place like Boston or Denver. Look up the top Pulmonary Hosp1tals via Google and go. The sooner the better. I ain’t not doc, but getting on Anti-fibrotics early seems important. From the stories on this forum, doctors have waited to prescribe appropriate Rx way too long. In my career as a psychotherapist, I had to continually nudge my clients to advocate for themselves….I found the majority of docs won’t do it for them. Educate yourself and find the right facility. Luckily, my Pul. doc was a resident at MGH Pul. in Boston, though I’m not in Boston. and my PCP dxed it as soon as he heard “crackles” and an good old fashioned x-ray.
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Do you drink milk or use milk products? I have found they are a culprit, for me, with Ofev. Using lactic free milk does the trick. Just something to check out. I’m a retired therapist and used to work with HIV folks, 20y/o. , back during the days of large “cocktails” and severe diarrhea. They would take 2-3 Tbl. of ground whole husk psyllium. It sounds counter to logic, but works! Check it out, but slowly increase it over a week +. If it helps, great. If not, not.
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I have an Inogen 1 G5, on rec. of a friend of a friend. It works great. I’m out on trails, walking with my dog every afternoon and it keeps up with me. Two things to remember, in my understanding. 1. The numbers on the “output” are just numbers to tell an increase or decrease of O2. The don’t mean “liters/whatever.” 2. If you’re flying you have to show that you have 1 1/2 times the length of the flight, including layovers, in battery life ON YOU. So for a 4 hr. flight you need to show you have 6 hrs. of battery time. I’m planning a trip to Europe in January, if Covid doesn’t doesn’t intervene. I have a 2hr. battery and 4 hr. battery and will have to purchase another 4 hr. battery to fly there. Yikes!!
Rand O’Brien -
the Moosewood “family” of cookbooks have a wealth of good vegetarian recipes. Excellent and always work.
Rand O’Brien
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I’ve been taking the Amazon capsules, forgot which one, at present Zenwise for about 6 wks. Thecapsules look the same as the ealier bottle with the same emount of ECGC. Bottle recommendation is 2/day, I take 2 twice/day. About 2-3 wks. into them I had my first 97% on the Oximeter, usually running at about 95, sometimes down to 92. Consistently O2 is now 96, 4-5 times per week 97 and once per week 98%. Really haven’t changed my routine beyond that. I have my pulmonary test next week, so we’ll see how my official numbers change from 11/19. Who knows, but something has shifted slightly.
Rand O’Brien -
John,
I haven’t had problems if I’m off by a couple hours here or there. But that is me. I have a well known cast-iron stomach. Also, as I have said before, for me, using whole husk psyllium is helpful with diarrhea, which seems counter-intuitive. It’s something I learned from working with gay men back in the 90’s and early this century. Given their Rx regimens, diarrhea was a constant. For a number of them, 3-5 tsp. in a full glass of water in the morning helped. You might have to work up to that. I’m not prescribing, just sharing. It’s the “colon cleanser” gig, not the powdered. But the initial question is that you will find your way with it. Good luck.
Rand O’Brien
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Piet, no one gets out of this alive; we all get our ticket. Some are just to better places as a destination. So….I work to just live life now to the best I can for myself. I’m never bored and as things get worse, as they assuredly will, I will find more and different things that fill my mind and soul. Just sayin’.
Rand O’Brien
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I may have missed something…most probably….but I don’t understand what “laser treatement” is. What happens specifically during a laser treatment and how, then, is it helpful?
Rand O’Brien
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Hi Folks,
I think the hoarding is out of fear/anxiety. People are trying to feel “safe” when they have little control. We turn to food and necessities. The food supply is not affected and the chains are long to supply major markets. I’m in a retirement community so we are looking out for each other and limiting trips off campus. A little stocking-up means fewer trips. This is gonna be a long haul; the feds finally see that. So we just need to keep on keepin’ on.
It helps to understand what we are up against, the virus itself, and then take care. In the science section of the NY Times today is an excellent couple of articles and visuals of what happens with this particular virus. It does what most viruses do, use cells to their advantage and “desire.” What helped me was seeing that each virus “cell” (viruses are not true cells) has an “oily” covering protecting it. Washing your hands with soap breaks this oily covering and literally destroys the virus on your hands. It’s not because of hands being dirty, but actually breaking the virus apart. That was information that was nice to know.
Rand O’Brien