jeffrey-carver
Forum Replies Created
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I have just had a phone consultation and will be working with Bob Doane to see if he can help turn around my PF. I’ll report back when there’s something to report. Thanks for the tip.
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Thank you for this. The silicone strip just broke on mine (after over a year), and I was planning to buy a new one. That Walmart price is a great deal, and I just took advantage of it.
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I’m being seen at BWH Lung Center in Boston, and I think the care teams are very good. (MGH and BWH have merged, but they still have separate lung centers, I believe.) I have not met the transplant teams, except for a preliminary interview.
I wonder if any of these centers in the NE have adopted (or tried) the less invasive transplant procedure pioneered by Cedars Sinai in L.A. (I don’t have the link, but I read about it on this forum.)
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I have been taking 400 mg of EGCG/day since reading about that small study reported in NJAM, maybe 8-9 months ago. No effect on my weight, alas; I would like to lose some weight. I started at 600 mg, the amount used in the study, but cut back because I find it a little upsetting to the stomach. I am also taking Pirfenidone (Esbriet). My docs didn’t find the study very persuasive, but they saw no harm in my giving it a try. My condition has been pretty stable. I use O2 at about 4LPM, which is really needed mostly when I’m exerting myself; but since I exert myself off and on all the time, I just use that amount routinely (unless I’m filling small tanks from my concentrator, when I have to dial it back to 3).
I saw that there’s a new green tea study coming (or maybe underway) at some center. I saw the posting on clinicaltrials.gov, but it wasn’t close to me. Someone’s taking green tea seriously enough to run a new study.
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I bought the O2Totes backpack on Etsy. I returned the first one as too small and got the sage-colored one that has a little bit of storage space–basically enough to carry the charger if you need it and the 12V charging cable. That definitely comes in handy,
The biggest problem with these packs is that most of them are made for small-framed people. I wear a size large shirt, and I found the first few backpacks I tried to be too tight–arm straps too narrow and too short for comfort. I felt like I was wearing a kid’s backpack. The sage O2Totes (sorry, I don’t have a link at hand) is a little larger and just qualifies as acceptable for size.
By comparison, when I’m carrying a small tank, I just put it in an old general-purpose backpack that’s oversized for the job. It’s way more comfortable, though.
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BTW, if you’re traveling by air with a POC, plan on spending extra time going through TSA while the agents figure out how to screen you. Also, plan on being in the one seat in the airplane where the AC outlet isn’t working. 🙂
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Folks, I think it would be helpful to everyone if, when referring to a POC’s output, you did not say 5L or 6L or whatever. Saying this often leads to confusion. None of them give 5 liters or six liters per minute. Because of the pulsing, it’s more like 1.xx liters per minute at high output.
Just remember, the 5 or 6 are just setting numbers, and are not the same as LPM.
As an illustration, I definitely get more boost from a small tank set at 5 (pulse) than from my Inogen set at 5 (pulse). They clearly have different scales, but you wouldn’t know it from the settings.
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There can be other factors at play, as well. It wasn’t until a year after my diagnosis that I was told to get an echocardiagram, to see if I had pulmonary hypertension. That resulted in further testing, which revealed that I have a small opening between the right and left atria of my heart, resulting in less blood going to the lungs than should be the case. (This is apparently fairly common, but often undiagnosed.) I also apparently have both regular and pulmonary hypertension on exertion, which does not show up with routine blood pressure checks. All this helps explain why my need for O2 seems to be greater than my level of fibrosis would indicate.
This is all new information to me, and I don’t yet know what the recommendations will be for medication to control the hypertension.
All this is mostly to say, sometimes you need more information than a CT scan showing fibrosis will tell you.
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What others said; you definitely would do well to have O2. Re the portable concentrators, none of them provide the flow rate of a home unit. Stephen, you mentioned the Caire unit, but it does not provide up to 5 LPM. Here’s a quote from their website:
“With 5 settings and up to 1050mL of oxygen per minute,” which means it has an arbitrary setting of up to “5” but the maximum delivery is actually about 1 LPM pulsed. That’s about the same as all the others.
I myself have an Inogen 5, and it’s fine for trips to the store, air travel, and so on; but when I’m exerting myself more, such as walking the dog, it doesn’t keep up with my needs and I have to deliberately pace myself. (I’m on 4 LPM at home, which is based on what I need when exerting myself. When I’m doing my daily exercises–pushups and squats, etc.–I have to allow a little recovery between sets, even on 4LPM continuous.)
Before I got my O2, I was dropping sometimes into the 70s while dog walking–and that’s what pushed me to ask for O2. What I use now for walks is a small tank in a backpack, set to “5” pulse–which is not 5 LPM, but does seem to be better than “5” or even “6” on the Inogen. To enable that, my provider set me up with a home-fill system, so I top off my tanks at home.
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Randy, I wonder if your Inogen is malfunctioning. Have you seen any alerts on the screen? I recently had to replace the sieve columns in mine. (Very easy to do. I bought mine directly from Inogen.) There’s a very distinctive icon that appears on the screen when the columns are spent.
Do you see the little green light flash every time you take a breath?
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I’m 73 and have been on Pirfenidone (Esbriet) for a few months now. I had trouble at first, mainly with fatigue and my sleep being messed up. I paused at 6 tabs/day, cut back to 4 for a couple of weeks, and then started increasing. It went better the second time, and I’m now taking the full dose of 9/day. I still get some fatigue, but overall it’s a lot better now.
I’m also taking EGCG, the green tea extract that was reported in our newsletter a while back (a small study showed it being possibly more effective in slowing and maybe even stopping the fibrosis than either Esbriet or Ofev; very small study, but controlled). I think those capsules are harder on my stomach than the Pirfenidone, but still tolerable.
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We just purchased (for two apartments) two of these filters from National Allergy:
https://www.natlallergy.com/advanced-hepa-air-purifier.htmlIt’s a less expensive (store-brand, essentially) version of the Austin filter that an air quality inspector recommended for our house:
https://www.natlallergy.com/austin-air-healthmate-plus-room-air-purifier-hm450.htmlIt was shipped from Austin, so there’s no question about who made it.
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I did not see a Dropbox link to the recording of the session. Could that be put up here for all to see, please? Thanks.
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I have a similar cough. It’s the same now as it was before I started Esbriet about 2 months ago. It has improved a little since I got serious about following at least one of the things they tell you about reflux: I no longer eat within a couple of hours before going to bed. (Dang.) I also notice that I’m more likely to start coughing if I’m off the oxygen for a little while.
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My own solution doesn’t seem to have been mentioned. I do have an Inogen 5, and like others, I quickly learned that it was not enough for active outings such as walking the dogs. I’m generally at 4 LPM at home when active, and settings of 4, or even 5 or 6, on the Inogen are not the same. The numeric settings on the portable concentrators are NOT liters per minute!
However, my supplier set me up with a refillable system that sits on my big O2 concentrator at home. One small tank and one medium. The small tank has its own regulator, which can do pulsed breath from 1-5, or 2L continuous. It turns out that the pulsed breath at 5 actually seems equivalent to 4LPM at home, or maybe a little better. That’s based on how well it seems to keep my O2 up when I’m out walking the dogs. Way better than the Inogen at setting 5. On the little tank, with a breathing rate of about 40-45 BPM when I’m walking, I can take a 35-40 minute walk and still have maybe 10 minutes of reserve left.
For longer outings, I use the larger tank or the Inogen. The Inogen is fine for shopping trips, etc., where I’m in the car or walking sedately through a store.
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I went on home O2 initially because of need for it while exercising. My health insurance pays for the rental, because it’s prescribed by my pulmonologist. At home I use 4LPM continuous while active. If you can get that covered by your insurance, you might also be able to get a home refill system covered. That gives me a small tank and a medium tank which I use in a backpack when out of the house.
Early on, I bought an Inogen 5G secondhand on Craig’s List, and it serves at need, but it’s not as good as the others when my need is higher. However, I have used it twice on trips when traveling by air, and it serves the purpose reasonably well. Including using while exercising when away from home. But it’s definitely less helpful than a home unit on continuous flow.
If you can get a home system rented through your insurance, that’s probably your best bet.
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Frank — For me, the smaller tanks are a better solution anyway, at least if you have a home-fill system (definitely ask about that). The POC is mostly for times when I think I’ll need greater time duration than a tank allows, since it can be plugged into car 12V or home 120V.
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This is a very good point, and I never thought of it until you said it:
When using a POC, please be aware that most likely all of the ones currently on the market DO NOT filter out VIRUSES… Therefore, those POC’s are taking O2 directly from the surrounding air and delivering it directly into your lungs unfiltered. This completely negates the use of a mask if you are masking in public settings. A tank system however, is enclosed and is the far safer alternative to the POCs.
I wouldn’t say it completely negates the value of a mask, since the bolus of O2 from the POC is only a fraction of your air intake, but it certainly would reduce the value of the mask. I generally use a small tank on errands anyway, but I will be keeping this in mind.
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I have used my Inogen solely for up to two weeks on a trip where I was unable to arrange for a stationary unit. I didn’t love it, but it served. On a recent 3-week trip to Puerto Rico, I just called around until I found a place that could rent me a 5LPM unit for the duration. It worked out fine. Cost a couple of hundred bucks.
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Yes, I am on a home-fill system provided by the company that supplies my big concentrator. It works quite well. I have a small tank, good for about an hour at pulse-5, and a larger tank that lasts a good bit longer. Either one can go in a regular backpack, with some bubble wrap jammed around it to hold it steady. It doesn’t entirely replace the Inogen (which, for example, I needed use when I flew on a trip; and which I often take if I’m going to be out and about for a while, and able to recharge in the car). But it’s great for most of my jaunts. The system is by Invacare, and my insurance covers the rental.
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>> Inogen One G5 portable concentrator that goes to 5 liters on demand
Again, that’s not really 5 liters. It’s just setting 5, and the actual amount delivered is considerably less than 5 L. It’s very confusing, and I wish they had come up with a better way of measuring these things. Even my pulmonologist was confused by it.
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Your Inogen goes to #6. That is not the same as 6LPM, and in fact is quite a bit less, because it is pulsed delivery. (I have the same model.) There is no direct correlation between LPM and the numbers you see on pulsed devices. They are different scales.
My own experience suggests that 5 on my Inogen does not give me as much boost as 4LPM on my continuous flow machine. But 5 on my small tank with pulsed delivery seems about the same as 4 in the home.
6 on the Inogen does indeed run down the battery pretty quickly. I’ve only used it a few times, mostly when I was plugged in.
