[george-poulsen]

Linda. you sound right on. I have taken over on my own behalf and have gone thru a good number of well intended Docs and PAs. Nothing against them and their good intentions, but if they are not ILD experienced and knowlegable then someone may be wasting your life line that’s left to some degree and you need to be very comfortable with anyone you see professionally and only you can determine that.

The only thing that makes me flare is when some one who should know better recommends I get bigger or better equipment from Inogen when my understanding is they do not currently mfr anything bigger than1-6 LPM ( I would have bought it by now trust me:-) and that is in a pulse mode. Our local Inogen in Dallas also does not handle oxygen. There are a few other larger permanent plug in non portable units out there by Devilbus and a few others but they are not portable, that I know of.

I have had PFT test and more Pft tests and yes the HRCT to me is the most critical tool for comparisons as one to the other along with a really good evaluation of each one against the other and against the first one that hopefully created a baseline for all to evaluate. The person they help the most however may be the next person writing a book. All its going to do is say whether you’re stable or on the move down or hopefully up eg is there movement or not?

The assumption is that the newest FDA meds are the only thing to promote and also the most expensive and yet we still say “there is no cure”, however if you can buy time, maybe, just maybe, its enough time to have one more approved med so we can then have two alternatives? But you are soo right that if we do not advocate on our own behalf then someone else may not either and then what?

***My question that has brought a number of blank stares has been “how many active Pulmonary Fibrosis, or other ILD cases has this doctor seen this year and what types, and what has been the most successful thing he/she has recommended or prescribed, so we can all share it? If that takes more than a half minute of Medicare charges to give that answer then I would start checking your local Forum Group for who they are seeing. There may be a reason. In my humble opinion there seem to be a number of groups who are consolidating local Docs offices into larger groups for “more efficient” practice and I’m not sure its in Medicare or the patients best interests. Just one guys opinion.

We can’t afford to waste too much time in our own interest unless we feel we are getting results of some kind. These are personal opinions of my own and with no professional or other motivating factors than a desire to get at least one or two more years of a good life. I do not give advice of any kind just opinions. Have a good day. George

[george-poulsen]

I use a finger oxymeter to know my saturation. The Inogen pulse units put out the rough equivalent of oxygen that you would have gotten from a constant flow device but they only put it out when you breathe in triggering a repetitive series of pulses kind of like an aqualung. It charges a set of tubes with a zinc mineral powder the absorbs the Nitrogen out of our air providing a bit more enhanced Oxygen mixture is my understanding. You can look it up on the internet as to “How do oxygen Concentrators work”.

Their Constant flow units just blow the same enhanced oxy mix from Zinc filter towers constantly across the nasal area so that you waste at least half your breathing out time without breathing in any enhanced air (but now there are those medallion units that supposedly provide kind of double time oxy by storing the part blown at you while you are exhaling and feed it back to you when you breathe in.

I have seen negative feed back on comfort of those medallions, but maybe someday the mfrs will listen to the patient instead of the designer who never had to use one of these. Good day all.

[george-poulsen]

I may have misquoted. sorry. It is united Therapeutics Corporation (UTHR)

Here is from their website. I am looking at getting my doc to add this to my Micaphenylate regime. So far I understand that the effect of a treatment appears to be rather short term like 15 minutes or so, is that right?

[george-poulsen]

Maria… I take statins and have for many years and have questioned the same thing. But when I question it in Co-Pilot the response I get is very low chance but always a possible….. and check with a doctor.

[george-poulsen]

Meredith, I agree wholeheartedly. I have had about 4 different Pulmonologists give me the “do it my way or the highway”on Ofev as being the only thing for me…period. In every case I have refused and continue to do so…. for now. I still may change my mind. But at 84 and Ofev only providing roughly 10% increase on the lifeline, I can only see a lot of probable discomfort and a lot of money outlay, for maybe only10% on remaining years, (+/- 6 years= maybe1/2 a year?) which isn’t a whole lot before an organ fails or the local bus gets me? So I’m taking my time determining one of those quality of life or quantity of life things and so far quality is a biggee for me. Thanks for hour input. Enjoy what you have and only think good thoughts!

[george-poulsen]

Yes– mine is not the same ILD as yours, but my wife has noticed numerous times that when stressed I seem to be breathing heavier on the oxygen. I really think that is common with “mankind”. Used to scuba dive and you could always tell when someone was sucking rapidly on that demand regulator and in a new situation:-)

I also have noticed several times that as my heart rate goes up my O2 goes down and vice versa after a bit of short time exercise and watching my finger Oximeter.

[george-poulsen]

–My experience only. I’m 84 and been on these portables for several years now.

Liable to be different opinions here, and not willing to argue my point. I have used my Inogen One G4 that produces settings of L1-L3, and I am now using an Inogen G5 that produces settings from L1-L6. I’m on 24/7 and if traveling the portable units can be run 24/7 with batteries or without a battery if the 120VAC charger is plugged into the wall or car charger is used. The desktop charger plugged into the Inogen seems to top it off much faster than the little charger unit that charges the battery out of the Inogen. I have also found that carrying on my shoulder/s is unbearable so I use the accessory two wheel trolley for my Inogen G5 and quite easy to maneuver or pick up and collapse handle and carry if need to.

On batteries I get about 2+/- hours per battery at L5 on the G5 portable unit. So, I have been purchasing my own batteries to have sufficient O2 time during the day and charged backups on portable and just keep rotating the batteries through the charger. I have a 120VAC charger that is on my desk too and simply plug G5 in most of the day at my desk to keep it topped off.

Bear in mind that if you buy additional batteries for total freedom, (which I do) that Inogen charges a bunch (about twice what Amazon does) and they have a 1 year warranty. However, Amazon sells the same identical battery (they say) for almost half the price $268 or so, but my experience so far is you either have to buy an extension warranty for $100 for each one or its non-returnable after a few weeks and only seems to last me 6 months, likely due to my rapid turnover by using batteries 100% during 17 hours a day. So I take my chances and just hope that each Amazon battery lasts longer than 6 months and I’m home free.

If you do the math it seems to me they produce roughly equivalent Lpm to pulsed air/oxygen for each minute that you breathe in at about 20 breathes in per minute and I believe it is about equivalent to the L-x setting.

However….I have found the best way for me is to not count too much on the L setting anyway, which is not highly accurate, and to instead adjust to keep my O2 Saturation (finger unit) to an acceptable level. For me that’s around 88-92 or better if sitting. At nite I use the Inogen “At-Home” on setting 4 and my WelVue recording watch shows a steady graph at about 98% all night when sleeping.

Important is that both of my Inogens are portable and when traveling I plug them into the car 12V power outlet and it keeps the Inogen well charged and topped off on arrival. I have heard others say that oxygen bottles are better but you can’t plug them in or re-filI easily on the fly. I know I’m heading that way but will also investigate how portable I can make one of the heavier 58# 10LPM units. Thinking about mounting one on my senior scooter along with maybe a small battery driven inverter and then using a car hitch platform for scooter and compressor/generator. Maybe someone knows or has tried this?

[george-poulsen]

I’m sure not a professional but what you say makes some sense to me. If you can stop the offending item and you see improvement in the FVC measurements it sounds like a start that I would personally be glad to see in my own condition. I guess if it also had an impact on improving the DLCO measurements it would be a reason to maybe think very positively about what stopping the drug did for you. Have you seen a situation where a particular drug was stopped and you saw the FVC actually improve? Certainly it would be a reason to also have a long discussion with your prescribing doctor. You could always share that info here too.

[george-poulsen]

I have gained a lot of info. Thanks.

My G5 Inogen on L5 is holding me pretty well so far around 90% while up for about 17 hrs. My 120Vac Inogen “At Home” holds 98% saturation for the other 7hrs sleeping at L4. My Cardiologist put in a stent last Oct (which has given me a small amount of general improvement in breathing) and his comment today is that my particular situation has a high draw-down on my available oxygen saturation which is small DLCO is +/- 27% Pred. 50ft walk to sidewalk with G5 already holding 92+/- and it drops saturation to 75% but with 3 minutes standing stock still and G5 at 5 will get me back to +/-91. For me its either sitting or standing quietly and feeling good, or movement and gulping air. The problem here is we’re all different ages, different conditions, different points on our own decline curve and depending entirely on which type issue we are saddled with. Type of fibrosis, or emphysema or COPD or cystic fibrosis and the source to begin with and whether on meds or not. So far, for my own reasons, I am not taking any specialty meds.

But I still hope for and anticipate how to handle the added needs for the bigger machine or oxygen tank above 6LPM. Yes my greater fear is that the oxy tanks don’t readily let you take an extra tank or two (that stays full and might be recharged on the go, if elsewhere when empty.

So I instead am thinking toward the relatively small Solar Generator (it ‘s really just a big 12 volt battery pack of Lithium batteries, (about 18#) called an inverter by any other name, that is charged optionally by solar or household120 plug but gas engine not necessary. That’s how you get 120Volt power in Rvs or campers when in the woods or wherever. It transforms the 12 volt battery power to 120Volts AC and depending on size can power one of the 275 watt 120Vot Ac concentrators for several hours or more. The problem is bulkiness of a small overnight bag with, say a Caire concentrator inside and one of these small solar generators in tow as a backup since I believe the Caire has a battery to hold power a while when off the grid.

[george-poulsen]

John, I just learned a new name (Mycophenolate) thanks and looks like a much much lower price than some other drugs in use too. It also looks like it has some pretty good objectives and results from what my uneducated mind makes from reading the Co-pilot response for my input of (Mycophenolate and lung scarring). This is what CO-pilot sent back on this drug and I find it very interesting from my own personal viewpoint. If its a (lot cheaper and stops the scarring) that would be extremely interesting to anyone! Do you get through VA or pharmacy and co-pay? and what strength? 500mg? Many side effects? I have looked at lots of alternatives and have refused all meds for my own reasons (and age) but this one is intriguing.

Heres co-pilot result:

“Copilot

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Mycophenolate, also known as mycophenolate mofetil (MMF), is an immunosuppressant drug that is used to treat a variety of conditions, including interstitial lung diseases (ILDs). ILDs can cause scarring in the lungs, inflammation, or a combination of both. If the ILD mainly causes inflammation, medications like mycophenolate may be prescribed to reduce the body’s immune response¹1.

Mycophenolate helps to control inflammation in the lungs and protects them from ongoing damage. While it may not improve symptoms such as breathlessness and cough immediately, it can prevent the development of permanent scarring or pulmonary fibrosis if the inflammation is left untreated²2. It’s important to note that the benefits of mycophenolate may take up to three months to become apparent, and regular monitoring through symptoms and lung function tests, as well as CT scans, may be necessary to assess the response to the medication²2.

If you have concerns about lung scarring and are considering or currently taking mycophenolate, it’s crucial to discuss this with a healthcare provider who can provide personalized advice based on your medical history and current health status.”

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msn.com

MSN

MSN

[george-poulsen]

1. Obstructive lung disease includes conditions that make it hard to exhale all the air in our lungs. Whereas restrictive patients have trouble expanding their lungs with air…both symptoms share the same main symptom: shortness of breath when you exert yourself.

2. I find when I go to sleep at night, that first I take about 3/4 ounce Gueffenessin to loosen up phlegm, then I turn over on my right side and it helps me to read and go to sleep with a lot less coughing..

[george-poulsen]

I use the Inogen G5 portable during the day and a couple of the transformer/chargers (from Inogen or a lot cheaper from Amazon) that plug direct to the Inogen, The G5 is a pulse. What I like is curing my stupidity. I was buying high priced $260-$300 batteries all the time since I was constantly on the portable and changing batteries like every 2-3 hours at my daily settings of 4-5 LPM equivalent). Now I just have 4 batteries period.

That was crazy. Now since I bought several of the chargers ($30 plus on Amazon) instead of those rip off direct connect chargers for the batteries themselves. that plug into the front of the G5 unit, I can simply have a charger at my family room and another in my office and another in the shower area plugged in, in morning with a 20′ cannula so I can take the oxy cannula into the shower at a higher rate and still come back out to dry off wile using my unit at L6 and yet still have total portability to my car etc. Those plug in unit chargers both charge the battery in the unit even while running in front of the TV (with or without the battery in the unit) and just unplugging charger lets me instantly go portable with the battery still in but more charged each time to the BR or Kitchen or into the car. When I go to the car (wife usually driving) I have a cigarette lighter type charger cord in each car for instant switch to 12 volt charging) and again can even use without the battery in the unit itself making it lighter a bunch)

At night I use the Inogen At-Home constant flow. (only goes from 1-5) but I have found that recording OXY saturation on a recording watch at night I can maintain 97-98% saturation on just the 3Level (approx 3 LPM equivalent) and the special recording watch (VIHealth) still lets me print-off a neat multicolorgraph from several years ago to-now of Oxygen / lung progress or lack of. Very interesting how uplifting it can be to see kind of effect of barometric seasonal changes (weather etc) and their effect on my RA/PF/ILD. I fell worse with approaching storm fronts several days away and more quickly have a “good” day when the Barometer begins to change downward, cool stuff)

This has raised my interest in the PAH side of this and to see if I cant maybe hit the lungs and scarring with the Mycaphenolate and then go to the (Tyvasol or Treprostinol) to expand the right side heart arteries to convert more air to oxygen like they used to do 100 years ago with Nyacin and other artery openers like Albuterol etc.

No prof’l here and not very brilliant even but am dogged in researching and looking at my alternatives until I have none left. I am convinced we have many, many, many alternatives on the way down the garden path to us but the R&D phases and FDA phases deeply need another faster hand on the throttle in our best interest. (kind of like Covid resolutions, in my mind). Above all I feel someone like the Local Govts could take a hand in stopping some of these mfrs from ripping us off on pricing. I just bought my units which not everybody can do, makes me feel better, but I am convinced that Medicare is paying a very strong price and not in the interet of giving us better care products either. Maybe we just have to invest in a few of the mfrs and then attend a Board Meeting and make ourselves heard somewhere?? Wonder if Warren Buffet uses oxygen yet, or Bill Gates–Kids. Thoose guys owuld do someting if they had to breathe on 1/3rd the air for a few days or lifetimes? Maybe a special invite to one of the Annual meeting of the Foundation, or we get the Prophet to buy up a few of these groups and make some lower margin and price point units for a batch of folks with no cures—-yet? {I don’t sound like this if I get ranting so I must be feeling good right now}

I forgot who mentioned the issues about OFEV and coughing and phlegm. That’s been a major with me a northerner since born in Ohio and now Texas and allergies are a big part. I am convinced it is mostly just allergic phlegm, (which plain ol’ Benadryl seems to help when I go to bed, also helps my personal sleep) but mine also involves blood, which the ENTs and Docs have said is just exposed blood capillaries from in the nasal area up stairs and they continue seeping/ bleeding openly in bed at night from drying effect of Oxy and guess where they exit in morning when clearing throat and nose. So I use Guaffenissin at night and again in morning to thin mucous somewhat quickly and let me get rid of it for another lovely day:-) of oxygen.

Ent’s have also said they could do some procedure with a quick knock out and reduce the exposed area of bleeding (I guess they mean burn it a bit). All of this assumes there’s nothing more serious happening that could be life threatening..gads!

Forgot to say or repeat that I use a stroller walker almost everywhere to carry my Inogen concentrator since it leaves a hand or two free for doors and a cup of coffee. But a lot of folks don’t realize just how much strain a stroller(wheeled) can put on an 84 year old back either and then we wonder why we hurt somewhere else too.

That’s ok though, it keeps the Docs wondering what I’m coming back for each time :-). I’m slowly figuring this whole thing out if my progression will stay somewhere above the last DLCO of 28-32 and FVC above my last 78% Pred. At least I am mobile, and occasional CBD can be a little better than Tylenol or Aspirin. For me, any of the pain meds seem to have a numbing effect on whatever tickles my throat to make me want to cough and then start even the throat into breaking down blood vessels.

If this jumble of word salad of sorts bores you than you might just delete if but once I start, I have a lot of thoughts and things I’ve tried and its hard to make it all sound like literature. Have a good day!

[george-poulsen]

Here are the two types of pendant vs mustache type oxygen economizers from the internet. The savings of oxygen up to 4:1 seems significant. Anyone have more info on these? Are there others we don’t show here? Looks like the only drawbacks are high cost. Maybe someone is working on a cheaper version. But, I assume as I work my way northward above 7LPM that these bottles may be the only thing I can use and so must get informed. Seems like a 4:1 leverage on a one hour bottle could be major as far as mobility.

Any comments?

The Drive CHAD Oxymizer is a Disposable Oxygen Conserver as part of an Nasal Oxygen Cannula that is available as a Pendant Oxymizer or a Mustache Oxymizer. The Pendant Oxymizer (P-224) can be used with a continuous oxygen flow of up to 15 LPM. This Pendant Oxymizer features a reservoir that can be worn under clothing. The Mustache Oxymizer (O-224) can be used with a continuous oxygen flow of 20 LPM. The Mustache Oxymizer is a Fluidic Oxymizer. Both CHAD Oxymizers provide continuous high-flow oxygen therapy for homecare, hospice, clinic, hospital, or long-term care. The Oxymizers are compatible with oxygen concentrators, compressed oxygen cylinders, and liquid oxygen. CHAD Oxymizers can be used with pursed lip breathing. Manufactured by Drive Medical, CHAD Oxymizers deliver an oxygen conserver ratio of 4:1.

CHAD Oxymizers may be used during exercise, resting, or during sleep. These disposable oxygen conservers offer oxygen therapy patients a comfortable alternative to using an oxygen mask. Oxymizer Conservers can be used while oxygen patients eat, drink, or talk.

Features & Benefits

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[george-poulsen]

Eva, can you clarify a bit on this? The unit that sits on your chest seems to be different than what the others seem talk about (the one that looks like a thick vinyl mustache when worn).

Does yours sit on your chest but then have a more normal cannula that goes around the ears and to the nose?

I have seen two different pictures of what I think of as a round medallion and normal nose cannula versus the one that goes directly to the nose but has that kind of wide thick vinyl mustache. The one that can sit on chest down under shirt somehow sounds like it would then have the more expected cannula to the nose?

Thanks

George

[george-poulsen]

I am also at my max of 5 stents as of last August, and I seem to see my DLCO improving a little bit. I have begun to wonder if 3 open chest/open heart surgeries may have had an impact on scarring and maybe even on the diaphragm tightness.

[george-poulsen]

Thanks Richard, was the Tyvasol lasting much longer when you were at the higher doses or is it kind of like the Albuterol asthma inhalers where the effect doesn’t seem to be very long regardless.

[george-poulsen]

Adele, my Rheumatoid Arthritis doctor may be thinking “Connective tissue” disease when pushing Mycophenylate where my Pulmonologists seem satisfied with IPF. Do you recall a specific test for Connective Tissue or was it more about inflammation indicators?

[george-poulsen]

Thanks Tracy, thats what I’m looking for since my RA doctor is really insistent on me getting started. At my point in life I just don’t want anything that makes anything worse than it already is, if that makes sense?

My issue is that I have kind of plateaued and I hate to poke a sleeping tiger….

[george-poulsen]

Diabenlo, did the Mycaphenolate cause any issues or side effects like the Ofev and could it be the reason you have not had worse condition until Covid?

I was doing fairly well until last May when I felt I might have had a touch of Covid or whatever and then things worsened. Dlco in particular dropped (21% pred), but may be inching back up a again.

I’ve been on Hydroxychloquine myself for a good number of years but no issues that I am aware of. I’m simply thinking that the Mycaphenolate for the lungs and the Tyvaso for the hypertension might hold things back without going overboard.

[george-poulsen]

David, you’re right, but I wasn’t thinking that one could “run” a 275 watt 120VAC unit using the solar panels. They just come with the unit and could charge the battery which is simply a storage place until used. It also comes with standard 120vac charger for the battery in the unit that charges much more quickly.

My thinking is more in the vein of using the battery powered, inverter power to run one of the bigger concentrator units that can keep me breathing when on the move when I exceed the present limits of my Inogen G5, L6. It would at least offer a degree of portability although quite heavy with 42# for compressor and another 32# for battery and inverter. (trying to prove concept first). I’d rather pay Inogen to create an L7-L10 unit but that automatically gets a much heavier compressor too.

Oxygen would seem logical but at higher oxygen rates those bottle don’t last very long either and batteries can at least be charged elsewhere.

My hats off to those who are trying to hook cannulas together from two units but I really think that approach would require re-processing the Oxygen from the first unit by running back through a second unit, eg in series, rather than in parallel.

Thoughts?

[george-poulsen]

David, I understand what you say but my thinking is that as long as someone says they don’t know, and they call it idiopathic, then it leaves an opening for me to still try to find what caused mine whether drug, viral, bacterial, environmental, etc? Seems like someone will at some point… right?

[george-poulsen]

JSR, thanks for the input. Can you share what dose of Mycaphenilate you are on? I’m also curious what your Fv% and Dlco% are? So far I am considered RA-ILD of a resistive type but have held off on meds and moving carefully because of so many potential side effects.

Thinking the “cure” may be worse than the pain. So far I can handle the issues while hoping for changes in the available meds but that may change before long, who knows? Biggest concern is likely going beyond my Inogen limits in the interim.

[george-poulsen]

John maybe you could add some info to the Post I just made asking for those who may have used Mycophenolate or Celcept?

Haven’t seen many people say they are using it but my Rheumatologist just pushed me very hard to use this for my Fibrosis that is theoretically caused by a very mild bit of Rheumatoid arthritis. She says she has a number of people who have used this successfully. Sounds a whole lot cheaper at $47 with Medicare (or I could go VA also) and side effects look to be a lot less than OFEV. So, I’m interested but would love to see more input from other users too. Its been around a long time for cancer use and sometimes thats more important than just the latest?

Do you know the source of your Fibrosis or type?

PS If you use any Microsoft on your PC, you’ll find the “Co-pilot” app that is free trial from MIcrosoft is a really thorough search engine to try. It gives a whole bunch of data on this drug and others you might be looking up. I believe it is using the new Artificial Intelligence programming to create its data.

George

[george-poulsen]

Millie, I’m only doing what others can do as easily, using the pc, I suspect. That sure could be a Pandora’s box of issues. Here is what Co-pilot sent back to me when I typed in, “dusting with baby powder and lung fibrosis”:

“Copilot

<cib-message animate=”” visible=”” type=”text” source=”bot” mode=”conversation” serp-slot=”none” product=”windows” density=”normal” table-version=”1″ current=”” indicator=”” katex-scroll=”” output-background=”” full-width=”” goldilocks-line-height=”” goldilocks-citation=”” goldilocks-attributions=”” goldilocks-message-actions=”” goldilocks-turn-counter=”” goldilocks-view-more=”” chat-type=”consumer” chat-state=”ok” attributions=”” finalized=””><cib-shared serp-slot=”none”>

Inhaling baby powder, which often contains talc, can lead to serious respiratory issues. Talc can be harmless if ingested or applied topically, but inhalation can cause severe consequences. Acute inhalation of talc can lead to a diffuse bronchiolar inflammatory reaction¹. Chronic inhalation of talc dust, especially in an industrial setting, can lead to a condition known as talcosis, characterized by chronic bronchitis, interstitial fibrosis, and/or granuloma formation¹.

Excessive inhalation of talc can cause a severe inflammatory reaction that may lead to pneumonitis, an inflammation of the lungs. If the inflammation continues, it can develop into pulmonary fibrosis, a condition where lung damage causes scarring². It’s important to use baby powder judiciously and avoid creating dust that can be inhaled.

If you’re concerned about exposure to baby powder and lung health, it’s best to consult with a healthcare professional for personalized advice and potential screening for lung conditions.”

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